Growing up, and still to this day, a favorite verse of mine has been 1 Cor 10:31, "Whether, then, whatever you eat or drink or whatever you do, do all to the glory of God." While I know I don't always get this one perfect, it still has a great reminder for us all that truly He wants every part of us to give Him the glory...In the good...in the bad.
And trying as many times have been, especially what we have encountered over the last two weeks or even this month, I am also reminded that in trying to give God the glory in all things that we are to go to Him in prayer. Today was Sunday. Our second Sunday in the hospital. While this one was not in the ICU, it was still in the hospital and for a moment Princess and I turned our little room into a Sanctuary. Thanking God. Praising God. A dear couple and great friends to our family gave a few years back Seeds Family Worship. It has truly been an amazing gift and has blessed our family time and time again as we listen to their albums and sing God's Word. You might recall I posted a link to their music last Sunday as we worshiped.
In listening again today and singing along Philippians 4:6-7 stood out for some reason. I essentially 1 Corinthians 10:31 and this in my mind at the same time. Philippians 4 tells us to not be anxious about about anything. But in everything, by prayer...by petition...present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus! So therefore, when it comes to giving God the glory in the good and even in the bad, we don't have to be anxious. The Bible says to simply present our requests to God- by prayer, by petition. Then let Him do the rest.
And so it is, while we have journeyed these last two weeks we have to turn our eyes to God. Today, we were anxious to go home. Yesterday, our Doctor said that we were looking at a 1 to 3 day Window which meant that it would most likely be Monday or even longer till we could get home. However, a good report was had and it actually looked like we were coming home today! Praise the Lord...
Well, as you can imagine we were pretty excited about the unbelievable possibility of headed home sooner than expected. Each morning we have had a follow up with the physicians over our care. And each morning Princess has made great strides. From overcoming her nearly 14 hours of continuously seizing, to overcoming her 11 days in ICU, learning to walk again from muscles that had almost given up, working hard to swallow to just enjoy a sip of water, to battling pneumonia. While all these accomplishments have been great our morning report was met with mixed emotions.
While Princess has made some great strides, it has become evident at this time that her voice and her throat healing have somewhat plateaued. Her breathing is labored and her voice is just a faint whisper. Early talk looks like she might have some laryngeal trauma. Therefore with the recommendation of the Physician, we will stay at least another night and day. This will allow Princess to connect with an ENT and get a very necessary laryngoscopy to see exactly what damage if any might be present that is not allowing her throat and voice to heal. While this news is bittersweet, we then turned our minds into prayers and kept praying for God's peace to transcend our understanding.
Around 12:45 today, it all changed....While visiting with our Neurologist, our room phone rang and it was our Primary Care physician calling. He then explained that he had reached out and contacted an ENT on our behalf and that the ENT would like to get us into his office possibly as early as tomorrow and that everything could be done in office for Princess...therefore, we would in fact be discharging from the hospital TODAY!!!
So, typing this evening, I am doing in from the comfort of our own home. What a homecoming for Princess! Critter was super excited by the surprise and even got some special snuggle time with Mommy just before bedtime. So praise the Lord!
Now begins a new journey as Princess will have to limit herself while at home. Our hope is to be with the ENT tomorrow and that what seems to be laryngeal damage, hopefully will not be too severe. We'll continue to post...and now from the comfort of our home! Thank you for continuing to lift us up to the Lord!
Sunday, July 30, 2017
Saturday, July 29, 2017
Post ICU...Day 2
Oh, it is wonderful to have my Princess back! Today is our second day out of the ICU where Princess began what would become an 11 day ordeal that started due to her seizing continuously for nearly 14 hours. Having been put into a medical coma and putting her life on the support of a ventilator, we have experienced an up and down mix of emotions and events over these last two weeks. It is surreal to think that nearly two weeks ago she was hooked to all this strange equipment for a second time and now, just two days out of the ICU, she is not hooked to anything...No oxygen, no IV line. Her recovery is remarkable.
Now, while my post has an upbeat message, it is important to know that she does have a long road to recovery ahead. Basically for the entire month of July, with the exception of one week, Princess has either been on a ventilator in the ICU or recovering in a hospital room. Obviously, we are very excited to be on the road to recovery.
These last two days have been good and have unveiled just how slow Princess will need to take things. Learning to walk again and use muscles that haven't been used for 11 days. Learning to swallow so that even just a sip of water could be had. While, we're confident that this relearning is not from the seizures, it appears that it has more to do with the extended intubation. While we were able to get some rest over these last two days, we have met with Physical Therapy, Occupational Therapy, and Speech Pathology.
Thankfully, yesterday, Princess did pass her retest of the swallow test. This meant that Princess could safely consume water, and solid food. Consuming food and water now meant that she could get the necessary food and nutrition to begin her battle back and have full recovery. Visits from Physical and Occupational Therapy were extremely helpful. It also gave good light to the physical limitations as Princess will need to rebuild her strength. Today and yesterday we are just working on walking with a walker and getting to and from bed to the bathroom or around the hospital room. The positive, for those that know Princess, she is a fighter and today it was incredible to see her progress and some strength come back. Her balance was improved and for the most part I was not assisting her as she moved.
Still no seizures! We have now gone a full week since the last recorded seizure. Praise the Lord! Her pneumonia is still pretty strong and today's x-ray did show that she is improving and today would complete her last day of antibiotics. As the doctor shared with us, he truly felt like Princess was over the hump and should continually get better each day.
So, that is the latest from the Foxhole. We are grateful for the rest and the lack of medical equipment that now surrounds us. Please continue to pray for Princess' strength, and healing. The pneumonia is truly strong and makes it very difficult to breathe. Her throat is extremely sore and inflamed from the second intubation in just three weeks. Pray that walking, balance, and stamina will be restored to her.
Thank you to everyone who has checked in, and encouraged us along the way. Last night we took the time to read through the blog as I shared with Princess what she had just gone through. I know today, she has also had the chance to read through some messages and even most of the cards that have been sent through the mail! Thank you!
Now, while my post has an upbeat message, it is important to know that she does have a long road to recovery ahead. Basically for the entire month of July, with the exception of one week, Princess has either been on a ventilator in the ICU or recovering in a hospital room. Obviously, we are very excited to be on the road to recovery.
These last two days have been good and have unveiled just how slow Princess will need to take things. Learning to walk again and use muscles that haven't been used for 11 days. Learning to swallow so that even just a sip of water could be had. While, we're confident that this relearning is not from the seizures, it appears that it has more to do with the extended intubation. While we were able to get some rest over these last two days, we have met with Physical Therapy, Occupational Therapy, and Speech Pathology.
Thankfully, yesterday, Princess did pass her retest of the swallow test. This meant that Princess could safely consume water, and solid food. Consuming food and water now meant that she could get the necessary food and nutrition to begin her battle back and have full recovery. Visits from Physical and Occupational Therapy were extremely helpful. It also gave good light to the physical limitations as Princess will need to rebuild her strength. Today and yesterday we are just working on walking with a walker and getting to and from bed to the bathroom or around the hospital room. The positive, for those that know Princess, she is a fighter and today it was incredible to see her progress and some strength come back. Her balance was improved and for the most part I was not assisting her as she moved.
Still no seizures! We have now gone a full week since the last recorded seizure. Praise the Lord! Her pneumonia is still pretty strong and today's x-ray did show that she is improving and today would complete her last day of antibiotics. As the doctor shared with us, he truly felt like Princess was over the hump and should continually get better each day.
So, that is the latest from the Foxhole. We are grateful for the rest and the lack of medical equipment that now surrounds us. Please continue to pray for Princess' strength, and healing. The pneumonia is truly strong and makes it very difficult to breathe. Her throat is extremely sore and inflamed from the second intubation in just three weeks. Pray that walking, balance, and stamina will be restored to her.
Thank you to everyone who has checked in, and encouraged us along the way. Last night we took the time to read through the blog as I shared with Princess what she had just gone through. I know today, she has also had the chance to read through some messages and even most of the cards that have been sent through the mail! Thank you!
Thursday, July 27, 2017
ICU Day 11
11th Day in the ICU.
As many of you observed, we did not post last night. This was mainly due to a day that started fairly rough, and yet, we're happy to say it ended on a great note.
The Bible says in Ephesians 5:18, "Do not get drunk with wine...but, be filled with the Holy Spirit." This verse came to mind as we started the night before, and woke yesterday as Princess was battling through the heavy effects of the sedatives. Though having been completely off the sedatives for nearly two full days, we could still see the lasting and consuming effects that these toxic drugs can have. Witnessing the effects firsthand, I was reminded that we are not to get drunk with wine. Why? Because its effects take over and we can lose control of ourselves. Just these sedatives, they were controlling Princess and affecting everything she did. Literally, she was seeing and experiencing things that weren't there. Her world and environment that she was living in did not match what she was experiencing.
The second half of the verse then tells us to be filled with the Holy Spirit. So while the author Paul was just a moment ago talking about being drunk with wine, he made the comparison to be "drunk" with the Holy Spirit. Amazingly, whether it is wine or the Holy Spirit, both can enter into our reality and give us a completely different experience.
Anyway, just a little moment that came to mind while this was going on. But thankfully, although we started out rough, the day in fact ended on a good note. During the day Princess was able to work with PT and get out of bed for the first time and sit in chair for nearly an hour. We have another great nurse that was so proactive in getting Princess care. Not only did she order PT, she actually even spent an hour or two coming Princess' hair, trying desperately to get the glue out, caused by the EEG. And YES, the EEG was removed on the same day as the ventilator.
As you also might know, pneumonia did set in from being on the vent for some time and so Princess did spend much of the day on a BiPAP machine. This is essentially a machine that is used just one step prior to a ventilator. Due to the pneumonia, and being on a ventilator for 9 days, the lungs still needed some assistance for Princess to fully breathe. By evening time she was considerably better and was using just a nasal canula.
Our night thereafter was somewhat short with again, very little rest.
Today was exciting as we got to see more progress from Princess. She was up in bed more often and truly, more like herself. Unfortunately, she did not pass her swallow test and therefore is still not able to consume liquids or even resort to a normal diet. While this experiences was somewhat of a setback, it did bring to reality that what Princess just went through and endured, we might be matched with an uphill battle.
While that battle might be tough, the great news for the day was that Princess was transferred out of the ICU this evening! This is great progress and even surprised us and others that we were going to the floor already. While her progress is seemingly fast now, the advice from many have been to just rest and take things very slowly.
So, off to bed for this tired couple!
As many of you observed, we did not post last night. This was mainly due to a day that started fairly rough, and yet, we're happy to say it ended on a great note.
The Bible says in Ephesians 5:18, "Do not get drunk with wine...but, be filled with the Holy Spirit." This verse came to mind as we started the night before, and woke yesterday as Princess was battling through the heavy effects of the sedatives. Though having been completely off the sedatives for nearly two full days, we could still see the lasting and consuming effects that these toxic drugs can have. Witnessing the effects firsthand, I was reminded that we are not to get drunk with wine. Why? Because its effects take over and we can lose control of ourselves. Just these sedatives, they were controlling Princess and affecting everything she did. Literally, she was seeing and experiencing things that weren't there. Her world and environment that she was living in did not match what she was experiencing.
The second half of the verse then tells us to be filled with the Holy Spirit. So while the author Paul was just a moment ago talking about being drunk with wine, he made the comparison to be "drunk" with the Holy Spirit. Amazingly, whether it is wine or the Holy Spirit, both can enter into our reality and give us a completely different experience.
Anyway, just a little moment that came to mind while this was going on. But thankfully, although we started out rough, the day in fact ended on a good note. During the day Princess was able to work with PT and get out of bed for the first time and sit in chair for nearly an hour. We have another great nurse that was so proactive in getting Princess care. Not only did she order PT, she actually even spent an hour or two coming Princess' hair, trying desperately to get the glue out, caused by the EEG. And YES, the EEG was removed on the same day as the ventilator.
As you also might know, pneumonia did set in from being on the vent for some time and so Princess did spend much of the day on a BiPAP machine. This is essentially a machine that is used just one step prior to a ventilator. Due to the pneumonia, and being on a ventilator for 9 days, the lungs still needed some assistance for Princess to fully breathe. By evening time she was considerably better and was using just a nasal canula.
Our night thereafter was somewhat short with again, very little rest.
Today was exciting as we got to see more progress from Princess. She was up in bed more often and truly, more like herself. Unfortunately, she did not pass her swallow test and therefore is still not able to consume liquids or even resort to a normal diet. While this experiences was somewhat of a setback, it did bring to reality that what Princess just went through and endured, we might be matched with an uphill battle.
While that battle might be tough, the great news for the day was that Princess was transferred out of the ICU this evening! This is great progress and even surprised us and others that we were going to the floor already. While her progress is seemingly fast now, the advice from many have been to just rest and take things very slowly.
So, off to bed for this tired couple!
Tuesday, July 25, 2017
Good Night
Well, the day is done and it is time to turn in for the night. While we celebrated the joy of being extubated and no longer being on the ventilator, the victory was short lived as Princess had to battle through the terrible side effects on being on such high sedation. The nurses and staff have been great and have taken great care to communicate and care for Princess.
We now turn to bed and hope that Princess can now get some great quality rest that she has been desperately needing for awhile.
Pray for her strength and the continuing withdrawal from the high doses of meds that she was on. Another praise was that the EEG was also removed. Praise the Lord and good night!
We now turn to bed and hope that Princess can now get some great quality rest that she has been desperately needing for awhile.
Pray for her strength and the continuing withdrawal from the high doses of meds that she was on. Another praise was that the EEG was also removed. Praise the Lord and good night!
Leads to...
The Longest Day has led to a victory...
Princess is extubated! No more ventilator! She is incredibly tired and lethargic from a restless night, and is now focused on trying to rest being not chained to bed by all the medical devices. Praise the Lord.
After being on the ventilator for 9 days, she is still trying to figure out her vocal chords and it will be a bit before she might be able to speak. The EEG should hopefully be coming off as well as we are still waiting on the Neurologist's approval. Once this is removed, she will be officially detached from anything holding her in bed.
Praise the LORD!
Please pray for:
Princess is extubated! No more ventilator! She is incredibly tired and lethargic from a restless night, and is now focused on trying to rest being not chained to bed by all the medical devices. Praise the Lord.
After being on the ventilator for 9 days, she is still trying to figure out her vocal chords and it will be a bit before she might be able to speak. The EEG should hopefully be coming off as well as we are still waiting on the Neurologist's approval. Once this is removed, she will be officially detached from anything holding her in bed.
Praise the LORD!
Please pray for:
- Princess' strength
- Seizures to stay away
- Successful passing of different benchmarks (swallow test...this will allow her to drink for the first time)
- Strength for Physical Rehab
- Strength for Mental Rehab...Not too sure yet what has been lost, if any
- Just as a dear Prayer Warrior mentioned to me during these last two weeks, God has been using Princess, even though she wasn't moving. Pray that God would continue to use Princess in amazing ways.
The Longest Day
Thank you for all those that checked in and were wanting an update yesterday (Monday) on Princess. It was a unique day as we were focused and understood that today would be the day that Princess would be able to finally come off the ventilator. It has been one full week and so you can imagine the anticipation that we all have. Unfortunately, during the overnight hours Princess was, understandably so, agitated with the vent now that she was fully off sedation. Due to her agitation and this giving rise to her heart rate, she was given a dose of sedative. And, much to our dismay, this meant that Monday was difficult in that Princess spent much of the day sedated and was not quite able to perform the necessary tests that would allow her to come off the ventilator.
The good news and great feedback came from one of the techs that reminded us that though she would not be coming off the ventilator, Princess did indeed breathe most of the day on her own with very little help. It does turn out that with the length of time she was sedated, her pneumonia, and that she is very low on "fuel" for energy it is going to take most likely an additional day. Needless to say, we were saddened by this as we also knew that now Princess would be facing possibly 24 hours or so awake and feeling the ventilator tubing down her throat...something that I don't think anyone would want to endure. Truly, Princess is amazing and her strength to endure and get through this ordeal is nothing short of a miracle.
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Part II
The night was a very long night. Both Princess and I were basically up the entire night. Princess extremely uncomfortable with the vent, even more aware of the now 9 days of laying idle in bed. Myself, trying to get Princess from becoming too agitated and hence warding off any additional sedation that could set her back even another day. Yesterday, in order for Princess to get nutrition, a tube was inserted through her nose. Unfortunately, I drifted off next to her bed just long enough that she, though restrained was still able to pull the feeding tube out. This has certainly made for an eventful morning, and we are anxiously counting down the hours till we see the morning doctors and begin the process to get Princess off the vent.
Please pray for Princess day. That she would be able to finally get some quality rest off the vent. Her seizures would continue to stay away, and that we would be able effectively communicate with the physicians. Yesterday was also difficult as we met all new doctors and having to make sure that everyone was on the same page.
The good news and great feedback came from one of the techs that reminded us that though she would not be coming off the ventilator, Princess did indeed breathe most of the day on her own with very little help. It does turn out that with the length of time she was sedated, her pneumonia, and that she is very low on "fuel" for energy it is going to take most likely an additional day. Needless to say, we were saddened by this as we also knew that now Princess would be facing possibly 24 hours or so awake and feeling the ventilator tubing down her throat...something that I don't think anyone would want to endure. Truly, Princess is amazing and her strength to endure and get through this ordeal is nothing short of a miracle.
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Part II
The night was a very long night. Both Princess and I were basically up the entire night. Princess extremely uncomfortable with the vent, even more aware of the now 9 days of laying idle in bed. Myself, trying to get Princess from becoming too agitated and hence warding off any additional sedation that could set her back even another day. Yesterday, in order for Princess to get nutrition, a tube was inserted through her nose. Unfortunately, I drifted off next to her bed just long enough that she, though restrained was still able to pull the feeding tube out. This has certainly made for an eventful morning, and we are anxiously counting down the hours till we see the morning doctors and begin the process to get Princess off the vent.
Please pray for Princess day. That she would be able to finally get some quality rest off the vent. Her seizures would continue to stay away, and that we would be able effectively communicate with the physicians. Yesterday was also difficult as we met all new doctors and having to make sure that everyone was on the same page.
Sunday, July 23, 2017
A Day of Worship
Sunday in the ICU was a day of worship for us. After a night to forget, Princess' heart eventually did begin to calm down at a steady heart beat of 179 and eventually coming down this morning and staying at 120 for most of today. She is still incredibly groggy and sedated and will be for the next two or three days. This is just due to the amount of sedation that was required to get her to stop seizing.
Coming out of sedation, she is definitely noticing that she is intubated and it is becoming more of a nuisance to her. We are hopeful tomorrow that she will be more responsive and therefore could look at being extubated at some point. We will need to make sure that she is able to breathe effectively on her own and then will need to do a swallow test to make sure that she could tolerate liquids.
Our highlight today was that she was able to show me her beautiful green eyes and we shared some tears. Worship for us included playing a selection of songs that have become meaningful for us through this journey. What a day to worship together! With all that Princess has endured for a full week, it was good to come before the Lord and sing. I would sing along with the song to her and she was singing in her mind. Tears poured as we sang of Heaven, God's healing, God's amazing love, and the power of His mighty name. Worshiping in the middle of a storm is challenging, yet when we call upon His name, He is faithful to hear us! Draw near to Him, and He will draw near to you. Bless the Lord at ALL times!
I look forward to tomorrow's update and I pray that Princess will have a restful night.
Please pray:
Coming out of sedation, she is definitely noticing that she is intubated and it is becoming more of a nuisance to her. We are hopeful tomorrow that she will be more responsive and therefore could look at being extubated at some point. We will need to make sure that she is able to breathe effectively on her own and then will need to do a swallow test to make sure that she could tolerate liquids.
Our highlight today was that she was able to show me her beautiful green eyes and we shared some tears. Worship for us included playing a selection of songs that have become meaningful for us through this journey. What a day to worship together! With all that Princess has endured for a full week, it was good to come before the Lord and sing. I would sing along with the song to her and she was singing in her mind. Tears poured as we sang of Heaven, God's healing, God's amazing love, and the power of His mighty name. Worshiping in the middle of a storm is challenging, yet when we call upon His name, He is faithful to hear us! Draw near to Him, and He will draw near to you. Bless the Lord at ALL times!
I look forward to tomorrow's update and I pray that Princess will have a restful night.
Please pray:
- Princess will get some good rest
- Princess has been diagnosed with pneumonia and is currently being treated for this. Pray that it would clear quickly
- Pray that the sedatives will quickly wear off and that Princess will be able to respond to certain commands and tasks
Our Worship Playlist (take a listen):
Just Ask...
Ask, and it will be given to you; seek, and you will find; knock, and the door will be opened to you. - Matthew 7:7
As the previous post was titled "Joy in the Morning," it is morning, and I am joyful. Princess heart rate has gone down and is currently around 121 beats per minute. While this is still fast for the moment, we'll definitely take it over what were were experiencing last night for nearly 6 hours. Another praise is that she is no longer showing signs of atrial fibrillation or Afib. Essentially, Princess' heart was not beating in sync and this is very serious as it can lead to several issues including heart failure, something that we potentially were facing last night. So, again, we are extremely grateful this morning that the heart has slowed significantly and is back into normal rhythm.
This morning, we'll meet with our team of docs, continue with Princess' wake up as she is still pretty out of it due to the high doses of meds, and then as well, hopefully remove her off the ventilator today. Please pray that she will in fact be able to sustain breathing on her own and the she will continue to wake and regain more of her own ability to do what is necessary.
Saturday, July 22, 2017
Joy in the Morning
If you have ever made homemade lemonade you know that you have to have lemons. And to make the lemonade you have to put the lemons through some intense pressure to get their juice, or what's on the inside. Whether you heat the lemons, roll them on the counter, or just keep them in the refrigerator, you end up putting the lemons in various situations all for one purpose...to make great lemonade. But just having the lemons does not get you the lemonade, You then have to squeeze them in order for them to produce the juice that is necessary for you to get your end goal, lemonade. I've been thinking about this illustration for most of the week. I visualized this process and even down to the final squeezing. And it came to me, when we have a sack of lemons to squeeze, we usually don't have to second guess, that upon squeezing we'll get lemon juice. Imagine, how disappointed would we be if we got a lemon and squeezed it and all that came out were seeds, or dried up bitter pulp, with very little juice?
Well, I used this because through the intense pressure of this week, and even the intensity of this evening, I felt a lot like the lemon. And just as the Bible quotes in Matthew, out of the overflow of the heart the mouth speaks. So what's inside of me? Hopefully a sweet juice that has been filled with God's Word and Christ's attitude. Truly an opportunity to say "I have hidden Your Word in my heart" (Psalm 119:11).
Tonight indeed was a pressure moment. It had to deal with the heart. Princess' heart. While we were successful in coming off the second and last sedative, we were thrown a curve ball as Princess' heart rate became pretty elevated and would not calm down. She hovered around 135 beats per minute and was also battling an intense fever. Shortly after giving her pain medicine to possibly address the heart rate (thought to be from the pain of the ventilator that she might be feeling), Princess' heart rate began to become very erratic and quickly shot up to 175 bpm, then back down to 129, then up again, then down again. This went on for a good while and then rapidly shooting towards 250 bpm, 275 bpm, and even topping out I think at 308 bpm. By this time the nurses on the floor were attending to Princess and trying to quickly get her medicine to stop the erratic nature and irregular nature of her heart.
By this time, many of you had been praying and were seeking the Lord on our behalf. Medication wasn't working and so then it was more medication, and then more medication. So we have been now at this for nearly 6 hours and at this current posting, we are somewhat stable bouncing between 162 and 178 bpm. Princess is in A-fib right now and they have her on a medicine to try to correct this. The good news is that her blood pressure is staying slightly regular.
Truly, this was a time where we weren't quite sure what was to be our outcome. So, thank you for praying that as for now her heart rate is still extremely fast, and it is appearing to come down. Pray for our night as I will be standing by keeping watch over her.
So tonight as I keep watch, I am reminded of Psalm 30:5, "...Weeping may last for the night, but a shout of joy comes in the morning."
Well, I used this because through the intense pressure of this week, and even the intensity of this evening, I felt a lot like the lemon. And just as the Bible quotes in Matthew, out of the overflow of the heart the mouth speaks. So what's inside of me? Hopefully a sweet juice that has been filled with God's Word and Christ's attitude. Truly an opportunity to say "I have hidden Your Word in my heart" (Psalm 119:11).
Tonight indeed was a pressure moment. It had to deal with the heart. Princess' heart. While we were successful in coming off the second and last sedative, we were thrown a curve ball as Princess' heart rate became pretty elevated and would not calm down. She hovered around 135 beats per minute and was also battling an intense fever. Shortly after giving her pain medicine to possibly address the heart rate (thought to be from the pain of the ventilator that she might be feeling), Princess' heart rate began to become very erratic and quickly shot up to 175 bpm, then back down to 129, then up again, then down again. This went on for a good while and then rapidly shooting towards 250 bpm, 275 bpm, and even topping out I think at 308 bpm. By this time the nurses on the floor were attending to Princess and trying to quickly get her medicine to stop the erratic nature and irregular nature of her heart.
By this time, many of you had been praying and were seeking the Lord on our behalf. Medication wasn't working and so then it was more medication, and then more medication. So we have been now at this for nearly 6 hours and at this current posting, we are somewhat stable bouncing between 162 and 178 bpm. Princess is in A-fib right now and they have her on a medicine to try to correct this. The good news is that her blood pressure is staying slightly regular.
Truly, this was a time where we weren't quite sure what was to be our outcome. So, thank you for praying that as for now her heart rate is still extremely fast, and it is appearing to come down. Pray for our night as I will be standing by keeping watch over her.
So tonight as I keep watch, I am reminded of Psalm 30:5, "...Weeping may last for the night, but a shout of joy comes in the morning."
Saturday Morning
Good Morning, Saturday! Princess was able to come off the first sedative well and finished the process around midnight. While it wasn't planned, they did go ahead and begin the taper off of the second sedative. Neurology just came by and gave their morning update and Princess is continuing to look very good on her EEG. While there is some activity (this is always the case) it does appear that whether coming off the sedative or the increase in her med yesterday, there is a positive effect.
The goal for today is to continue the taper of her second and last sedative. Her vital signs are all looking good and there is a positive mood that over the next 8 to 10 hours we might get to see Princess awake for the first time since Monday evening. If not today, it will be tomorrow! To my agreement, the doctors are choosing to be extremely cautious in the taper so as to not disrupt or aggravate the brain and therefore cause seizures that could end up leading to where we are today.
Our "Angel" Nurse is back again today (she was on yesterday, too) and I am thankful that she has been able to be part of the taper process.
So, please pray for:
The goal for today is to continue the taper of her second and last sedative. Her vital signs are all looking good and there is a positive mood that over the next 8 to 10 hours we might get to see Princess awake for the first time since Monday evening. If not today, it will be tomorrow! To my agreement, the doctors are choosing to be extremely cautious in the taper so as to not disrupt or aggravate the brain and therefore cause seizures that could end up leading to where we are today.
Our "Angel" Nurse is back again today (she was on yesterday, too) and I am thankful that she has been able to be part of the taper process.
So, please pray for:
- Princess' seizure activity to stay at bay
- Healing of Princess' brain
- As she begins to come off the sedative that she would have a quick recovery and that we would take things slowly.
- Communication between myself and the physicians regarding medicines and Princess' care. Thankfully, the Neurologist today did indicate they are greatly relying on my input especially after they come off the sedative to aid them in their understanding of what Princess is like on a daily basis (baseline)
Friday, July 21, 2017
Checking In
Friends, thank you for your continued support! I will keep this brief to just let you know that Princess is nearly halfway through the taper of the first of two sedatives. I imagine that we will most likely be off of the first sedative sometime between 10 PM and 11 PM CST. The evening report from Neurology is that Princess is continuing to not have any seizures. The Neurologist is seeing still little activity, which is normal for Princess and therefore we are still in positive territory.
Therefore, we are still praying for the seizures to stay away and then will most likely look to begin the taper of the second sedative sometime tomorrow based upon the EEG report.
Princess did spike with a fever today at 101.8, and at this time it is coming back down and is in the 100's.
Thank y'all and well continue to update and post!
Therefore, we are still praying for the seizures to stay away and then will most likely look to begin the taper of the second sedative sometime tomorrow based upon the EEG report.
Princess did spike with a fever today at 101.8, and at this time it is coming back down and is in the 100's.
Thank y'all and well continue to update and post!
Fourth Quarter
My football career lasted almost two months.
The excitement of being in Junior High and needing to prove my manliness in the spirit and camaraderie of the game filled not just my little frame, but that of many others. I would imagine that several of you can admit to that. The Lord gifted me with speed and so naturally, I was put in a position that somehow meant:
The excitement of being in Junior High and needing to prove my manliness in the spirit and camaraderie of the game filled not just my little frame, but that of many others. I would imagine that several of you can admit to that. The Lord gifted me with speed and so naturally, I was put in a position that somehow meant:
- The ball was snapped to the Quarterback
- Quarterback hands me the ball
- B gets hit...
And therefore, so went my two month career and the realization that it really is more blessed to give than to receive (Acts 20:35)! Time to retire!
Life has a way of knocking us down. And it is how we respond to when we get knocked down that shows us a lot. It doesn't always mean that we will respond with grace. It doesn't always mean that we won't hurt, feel discouraged, or even that everything is okay. But, in the very essence of the moment, for us Jesus Christ who can sympathize with our weakness (Hebrews 4:15), is able to pick us up, dust us off, and we can get handed the ball again. Does it mean we sometimes want to hang up the jersey, throw in the towel, retire? Certainly! And yet, building a life on a firm foundation, a Rock, we can be like the wise builder that Jesus talks about in Matthew 7 and when the rains and storms come we shall not be moved.
Our ongoing 11 year journey has shown, maybe better, taught us a lot of this. And part of the message that came this morning from my time in God's Word (www.ttb.org) was that we don't want our personal experience or for that matter, a person, to ever get in the way of preaching Christ. And so it is, Princess and I have journeyed and we do pray continually that the Lord would strengthen us and that while we would love for the present circumstance to be over, we more importantly want God to be glorified.
So to borrow from the cliche', we are in the fourth quarter (at least in the hospital). The goal for today is to begin bringing Princess off of her sedatives and our of the medically induced coma. We anticipate this to be a long day and process. Due to her being on a "big girl" "offensive lineman" dose of meds, we will be bringing her meds down by 1 mg per hour as she can tolerate it and the first drug will take anywhere from 10 to 12 hours. While this is good, the focus will be for Princess to not show any seizure activity.
Neurology just left with their report...Seizures have kept at bay, though, during the night there were in fact some signs that Princess' brain is still very irritated and the potential for seizure activity is HUGE. That said the weaning process will be interesting as the sedatives are also acting as an anti-seizure drug, and without the sedatives, Princess potentially could have a lot of seizures. I do greatly appreciate and understand the concern by the professionals. After further dialogue, we did decide to do a bolus dump of Princess' current medicine and hopefully that could take the "edge" off and allow her brain to "cool" down. Liken this to an open wound that you do not want to get more inflamed or irritated.
So, it is the fourth quarter, we might be a little behind on the scoreboard, but we are not out. The wean of the sedatives will soon begin, and we can only pray that Princess will wake, seizures will have stayed away.
Please pray:
- Princess will remain seizure-free
- For the weaning of the sedative and the potential side effects
- For Princess' healing. What she went through these past three weeks, namely Monday evening/Tuesday morning was tremendous and Neurology cannot stress the severity enough
Thursday, July 20, 2017
Call to Me...And I will Answer You
Jeremiah 33:3 says, "Call to me and I will answer you, and tell you great and wondrous things." Friends and prayer warriors, I was hit hard with the reality of God's goodness today. After a wonderful visit with a dear friend and a brief moment to see and feel the sunshine today, I left after being ministered to and just walked through the hospital with my hands and arms outstretched, tears coming down and literally praising out loud the goodness of God. Not at all because I deserve it, because I don't, but because that is just who He is. I literally was just overwhelmed.
You have been the hands and feet for us these last few weeks. You have carried our burden with you and have overwhelmingly encouraged me, The Grandmother, and I can only imagine the many others as we have all been interconnected through social media because of Jesus Christ. So again, thank you!
First, to truly get a feel for today, I would encourage you to read yesterday's post to get some great insight and perspective. Additionally, if you have been reading our posts, I have tried to make it very clear that God has answered specific prayers and I stress that it is amazing to see God's hand answering specific requests. From specific nurses, to conversations with doctors, to even Princess' healing...each one of you have had a part in this. Simply, thank you for talking to God! He loves it when we call upon His name.
Last night after our "encounter" and my decision to not go with the physician's recommendation; rather go with the Great Physician's recommendation, I was overwhelmed with a peace that did transcend understanding (Proverbs 3:5-6). I continued to be through the night continually praying over my Princess. Waking at 4 AM I overhead the nurses discussing Princess, and then learned that her Neurologist did check in at midnight and did confirm NO SEIZURES up to that point! PRAISE JESUS! This meant that from our conversation just literally 6.5 hours earlier that Princess had not had any seizures. Oh taste and see the Lord is good.
Morning would come quickly and of course my mind began to race with question as to what has happened since midnight? Each passing hour wondering and praying. Several of you have also encouraged me to not give in to Satan and his attack to cause me to doubt. I can honestly say that throughout the morning, I really felt like a target was on my back.
The morning would progress and after seeing an entourage of physicians, I had yet to have a consult with the Neurologist. So then I start to wonder is this good for bad?
11:00 the Neurologist walks in...
"Well, we're petty lucky. She has not had seizure since 4 PM yesterday..."
PRAISE JESUS!!! PRAISE THE LORD!!!
So that was truly the best news I could have received! I then felt that I needed to share some background with the Neurologist and so if you will oblige, I will give you a look in:
Dr X if I may, I believe you knew walking out of the room last night that I was not a fan of what you proposed. When I did the math you were asking us to go up on a medication by 950% and to do that particular dose twice per day. My wife has worked too hard to get to this point and frankly we have better control of her seizures today than we did at even higher doses that what you proposed. Well, after you left last night, I was restless and had absolutely no peace about the direction we were going. Therefore, I began to pray to the Lord and ask God for direction. It was then I felt that He was leading me to not give my wife the medicine, rather give her more time to rest. You see, we believe as the Bible teaches, to seek the Lord first and that is what I needed to do last night. As well, our mantra, our family's life verse in the Bible says to "Trust in the Lord with all your heart and do lean on your own understanding; in all you ways acknowledge Him and He will direct your paths. And so that is how I arrived at my decision to block the meds. Now, I realize that just as I need to trust the Lord, that He has created you for this moment and for you to take care of my wife. Therefore, I also need to trust you. For this is what you were created for. So I am looking at trusting the Lord and trusting you for your God-given wisdom. However, in seeking the Lord first, He made it clear to me to not move forward the medicine.
And with that the rest of our day was set. Today was indeed a day to rest and continue to pray that Princess would remain seizure free. And as am about to post, Princess has in fact been seizure free now for 30 hours!!! AMEN!
So gameplan... assuming that we did continue to be seizure free today we would look to begin reducing the sedation tomorrow. The Neurologist is still concerned that Princess will have seizures, so therefore we know how we need to pray. The wean could take all day, and could take up to two days just because of how much medicine has been pumped into her little frame. And however long it takes, that's okay. Tomorrow, I may get to see my Princess again, and oh, the stories, the messages, the prayers that we will get to share with her.
So, today, Call to Jesus and He will answer you. It may not be what the answer you want, know that He who began a good work in you will see it through to completion. The He has good plans for you. Nothing to hurt you. Plans for a hope and a future. What wonderful news!
Please pray:
You have been the hands and feet for us these last few weeks. You have carried our burden with you and have overwhelmingly encouraged me, The Grandmother, and I can only imagine the many others as we have all been interconnected through social media because of Jesus Christ. So again, thank you!
First, to truly get a feel for today, I would encourage you to read yesterday's post to get some great insight and perspective. Additionally, if you have been reading our posts, I have tried to make it very clear that God has answered specific prayers and I stress that it is amazing to see God's hand answering specific requests. From specific nurses, to conversations with doctors, to even Princess' healing...each one of you have had a part in this. Simply, thank you for talking to God! He loves it when we call upon His name.
Last night after our "encounter" and my decision to not go with the physician's recommendation; rather go with the Great Physician's recommendation, I was overwhelmed with a peace that did transcend understanding (Proverbs 3:5-6). I continued to be through the night continually praying over my Princess. Waking at 4 AM I overhead the nurses discussing Princess, and then learned that her Neurologist did check in at midnight and did confirm NO SEIZURES up to that point! PRAISE JESUS! This meant that from our conversation just literally 6.5 hours earlier that Princess had not had any seizures. Oh taste and see the Lord is good.
Morning would come quickly and of course my mind began to race with question as to what has happened since midnight? Each passing hour wondering and praying. Several of you have also encouraged me to not give in to Satan and his attack to cause me to doubt. I can honestly say that throughout the morning, I really felt like a target was on my back.
The morning would progress and after seeing an entourage of physicians, I had yet to have a consult with the Neurologist. So then I start to wonder is this good for bad?
11:00 the Neurologist walks in...
"Well, we're petty lucky. She has not had seizure since 4 PM yesterday..."
PRAISE JESUS!!! PRAISE THE LORD!!!
So that was truly the best news I could have received! I then felt that I needed to share some background with the Neurologist and so if you will oblige, I will give you a look in:
Dr X if I may, I believe you knew walking out of the room last night that I was not a fan of what you proposed. When I did the math you were asking us to go up on a medication by 950% and to do that particular dose twice per day. My wife has worked too hard to get to this point and frankly we have better control of her seizures today than we did at even higher doses that what you proposed. Well, after you left last night, I was restless and had absolutely no peace about the direction we were going. Therefore, I began to pray to the Lord and ask God for direction. It was then I felt that He was leading me to not give my wife the medicine, rather give her more time to rest. You see, we believe as the Bible teaches, to seek the Lord first and that is what I needed to do last night. As well, our mantra, our family's life verse in the Bible says to "Trust in the Lord with all your heart and do lean on your own understanding; in all you ways acknowledge Him and He will direct your paths. And so that is how I arrived at my decision to block the meds. Now, I realize that just as I need to trust the Lord, that He has created you for this moment and for you to take care of my wife. Therefore, I also need to trust you. For this is what you were created for. So I am looking at trusting the Lord and trusting you for your God-given wisdom. However, in seeking the Lord first, He made it clear to me to not move forward the medicine.
And with that the rest of our day was set. Today was indeed a day to rest and continue to pray that Princess would remain seizure free. And as am about to post, Princess has in fact been seizure free now for 30 hours!!! AMEN!
So gameplan... assuming that we did continue to be seizure free today we would look to begin reducing the sedation tomorrow. The Neurologist is still concerned that Princess will have seizures, so therefore we know how we need to pray. The wean could take all day, and could take up to two days just because of how much medicine has been pumped into her little frame. And however long it takes, that's okay. Tomorrow, I may get to see my Princess again, and oh, the stories, the messages, the prayers that we will get to share with her.
So, today, Call to Jesus and He will answer you. It may not be what the answer you want, know that He who began a good work in you will see it through to completion. The He has good plans for you. Nothing to hurt you. Plans for a hope and a future. What wonderful news!
Please pray:
- Princess will come out of sedation easily
- Princess will have no seizures as they bring her back
- We will have clear direction as to her rehab and what we will need to do
Wednesday, July 19, 2017
Move Me
IN thinking out today's post, I had in my mind excitement and peace and elation to share great news. The news that is to come does in fact translate to all those, and it was what I will share in a moment that (as you might be reading through the lines) did come at us like a nasty curve ball.
First, I met with the doctors that are over Princess' care early this morning and each one had a great report. Nephrology said that Princess' kidneys are working great, doing what they are supposed to do, sodium levels are in fact stable and probably fair to say that the crashing of her sodium is probably contained and Princess does need to drink less fluid.
Neurology came by next and reported that as of 9 PM last night Princess did not record a seizure. Thus we were now nearly at 12 hours without a seizure after nearly 14 hours of continuous seizures. That said, the goal now was to go 24 hours or so without a seizure, and then look to begin removing the sedation, get her back to breathing on her own and voila, we would be doing a wash, rinse, and repeat version of two weeks ago.
So today was a day to just feel at peace, much thanks to the Lord hearing your prayers. I had incredible peace today and was well comforted that Princess' brain was finally resting. So spending some time praying and thanking God, I began pouring through Psalms and even read aloud to Princess making the Scripture more personalized with our names, and pronouns.
Psalm 30 for example is what we read together- We will extol You, O Lord, for you have lifted us up...O Lord my God, we cried to you for help, and You healed Meredith. O Lord, you have brought up our souls from Sheol; You have kept Princess alive, that we would not go down to the pit. We will sing praise to the Lord, and give thanks to His holy name... To you, O Lord, I called and to the Lord we made supplication...You have turned my mourning into dancing; You have loosed my sackcloth and clothed my with gladness, that my soul, our souls may sing praise to You and not be silent. O Lord my God, I will give thanks to you forever...
And from there other passages just flowed and truly it was a little sanctuary of praise in this little ICU room. O taste and see that the Lord is good!
So there was what was going to be today's post...
Around 5 or so our nurse came in and informed us that apparently Princess has in fact had several seizures today (even under heavy, heavy sedation as I mentioned yesterday) and that the Neurologist was going to come visit with me. Somewhat surprised, I wrestled with what I knew would come next...a heavy dose of more seizure drugs, something Princess, with success, has worked so hard at reducing over these last two years.
Our neurologist did come in around 5:30 and did break the news to me that she has had several seizures and with that would begin with a bolus dump of a particular drug. This would mean that Princess would in one dose experience a 900% increase of a drug that she has actually reduced by 95%. Keep in mind that with her reduction she has had better control that what she has ever experienced in 11 years. Hence, what was about to take place was a mentality that has been seen time and time again that if the symptoms or complications don't go away, you have to treat with more meds. While this can be the case for some, in Princess' case, it has actually been shown and proven that sometimes less is best...
With further petition to the Neurologist, I wound up relenting in despair and decided to go with the plan and see how Princess would do over the next 12+ hours.
O Lord, my rock, my redeemer....What should I do. Matthew 6 says to seek the Lord first, and His righteousness. Therefore, I took Princess' hand and began to pray and call upon the Lord. Psalm 34 says that the Lord is close to the brokenhearted and saves those who are crushed in spirit. James 4:8 says "draw near to God and He will draw near to you." And then I waited.
And then "I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the pit of destruction, out of the miry clay. He set my feet upon a rock making my footsteps firm." Psalm 40:1-2. Restless with what I just agreed to, the peace that I had earlier in the day was gone and it was time to Trust in the Lord....and let His peace that transcends understanding rule.
I would now at this time make the decision to stop the med from being introduced and keep Princess on her current regimen giving her more rest and let's see what the night would hold and revaluate come morning. With this decision, I then reached out someone close with our care and fellow Brother in Christ, and he confirmed my approach...."Just give it more time..."
And then the words and prayer came to me as I now had a target on my back from the physician and staff for stopping the "plan."
First, I met with the doctors that are over Princess' care early this morning and each one had a great report. Nephrology said that Princess' kidneys are working great, doing what they are supposed to do, sodium levels are in fact stable and probably fair to say that the crashing of her sodium is probably contained and Princess does need to drink less fluid.
Neurology came by next and reported that as of 9 PM last night Princess did not record a seizure. Thus we were now nearly at 12 hours without a seizure after nearly 14 hours of continuous seizures. That said, the goal now was to go 24 hours or so without a seizure, and then look to begin removing the sedation, get her back to breathing on her own and voila, we would be doing a wash, rinse, and repeat version of two weeks ago.
So today was a day to just feel at peace, much thanks to the Lord hearing your prayers. I had incredible peace today and was well comforted that Princess' brain was finally resting. So spending some time praying and thanking God, I began pouring through Psalms and even read aloud to Princess making the Scripture more personalized with our names, and pronouns.
Psalm 30 for example is what we read together- We will extol You, O Lord, for you have lifted us up...O Lord my God, we cried to you for help, and You healed Meredith. O Lord, you have brought up our souls from Sheol; You have kept Princess alive, that we would not go down to the pit. We will sing praise to the Lord, and give thanks to His holy name... To you, O Lord, I called and to the Lord we made supplication...You have turned my mourning into dancing; You have loosed my sackcloth and clothed my with gladness, that my soul, our souls may sing praise to You and not be silent. O Lord my God, I will give thanks to you forever...
And from there other passages just flowed and truly it was a little sanctuary of praise in this little ICU room. O taste and see that the Lord is good!
So there was what was going to be today's post...
Around 5 or so our nurse came in and informed us that apparently Princess has in fact had several seizures today (even under heavy, heavy sedation as I mentioned yesterday) and that the Neurologist was going to come visit with me. Somewhat surprised, I wrestled with what I knew would come next...a heavy dose of more seizure drugs, something Princess, with success, has worked so hard at reducing over these last two years.
Our neurologist did come in around 5:30 and did break the news to me that she has had several seizures and with that would begin with a bolus dump of a particular drug. This would mean that Princess would in one dose experience a 900% increase of a drug that she has actually reduced by 95%. Keep in mind that with her reduction she has had better control that what she has ever experienced in 11 years. Hence, what was about to take place was a mentality that has been seen time and time again that if the symptoms or complications don't go away, you have to treat with more meds. While this can be the case for some, in Princess' case, it has actually been shown and proven that sometimes less is best...
With further petition to the Neurologist, I wound up relenting in despair and decided to go with the plan and see how Princess would do over the next 12+ hours.
O Lord, my rock, my redeemer....What should I do. Matthew 6 says to seek the Lord first, and His righteousness. Therefore, I took Princess' hand and began to pray and call upon the Lord. Psalm 34 says that the Lord is close to the brokenhearted and saves those who are crushed in spirit. James 4:8 says "draw near to God and He will draw near to you." And then I waited.
And then "I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the pit of destruction, out of the miry clay. He set my feet upon a rock making my footsteps firm." Psalm 40:1-2. Restless with what I just agreed to, the peace that I had earlier in the day was gone and it was time to Trust in the Lord....and let His peace that transcends understanding rule.
I would now at this time make the decision to stop the med from being introduced and keep Princess on her current regimen giving her more rest and let's see what the night would hold and revaluate come morning. With this decision, I then reached out someone close with our care and fellow Brother in Christ, and he confirmed my approach...."Just give it more time..."
And then the words and prayer came to me as I now had a target on my back from the physician and staff for stopping the "plan."
"There is a way that seems right to man, but its end is the way of death..." -Prov 14:12 Lord, give Princess more time and for you to be glorified. Though the doctor wants to go one way, I'm restless and want your input, Oh Lord. While I am standing in the way of their direction, their intervention, move me and my flesh if I'm acting out of your will. Princess needs your healing, provide as you see fit. In Jesus' name.
So, as I quickly posted and asked for your prayer, the above prayer is the resultant.
So this evening and in the morning please pray:
- opportunity to connect with the Neurologist and it not be a confrontation. That we would each have a mutual respect and understanding and that I would be able to effectively communicate and 11 year journey to someone who has only met Princess through a medical chart and over the course of two days.
- that Princess would go this evening, the next 12 hours seizure-free
- Continued peace. The burden of my decision became weighty and while I have peace, there is still a second guess.
- That Princess will heal from this and God will be glorified.
- Christ to be made known in this ICU unit.
- Don't forget to pray for those that are around us. Based upon the size of the crowd in the waiting room today, there are many that are grieving this evening.
Tuesday, July 18, 2017
Heavy Meds...
2nd Corinthians 4:8, the apostle Paul writes, "we are hard pressed on every side, but not crushed; perplexed, but not in despair."
Today has been a long day. First, I am very, very humbled and thankful for the many who have reached out either in person, text, email, message, call, etc. Princess had somewhat of a family reunion today as two of her Uncles and an Aunt were here to visit today. Oh, how I long for her to welcome you with a smile and a hug as I know she would desperately love to. I am grateful for our family, as well as our church family who has been also very supportive in this journey.
While my previous post gave detail about our night/early morning, it wasn't until 6 AM this morning that Princess finally laid still. And though she finally laid still, unfortunately her brain did not comply and she sadly continued to have seizures all throughout the day. Due to her seizures, they did continue to increase her sedatives. While this may not mean much to those reading, a nurse was able to describe that Princess is literally on doses that are really meant for Offensive Lineman in the National Football League. Hence, while we saw that it took quite a bit to even get her calm, she is requiring a substantial amount well more than a girl her size should really require.
And yes, though heavily sedated and on a ventilator, she is still having seizures. Early today it was recorded nearly one an hour and that number did lessen this afternoon. One of the consequences to the heavy sedation is that her blood pressure needs to be closely monitored. Getting to a point of 70/42 they had to momentarily lessen the sedatives to only discover the lessening the sedative opened a floodgate for seizure activity to take place.
To put this ICU experience in perspective, Princess is requiring even greater amounts of sedatives and is still seizing as to our visit just two weeks ago, where her seizure activity had been quelled under less sedation.
The Lord has provided in amazing ways. Your prayers have been answered as we were reunited with our precious Nurse from our last time. Her care, and concern for Princess is so amazing! To those that came today, last night, and over these last few weeks, I don't know how we could every repay you, and I am especially praying for blessing upon blessing for you and your sacrificial love.
Please pray for:
Today has been a long day. First, I am very, very humbled and thankful for the many who have reached out either in person, text, email, message, call, etc. Princess had somewhat of a family reunion today as two of her Uncles and an Aunt were here to visit today. Oh, how I long for her to welcome you with a smile and a hug as I know she would desperately love to. I am grateful for our family, as well as our church family who has been also very supportive in this journey.
While my previous post gave detail about our night/early morning, it wasn't until 6 AM this morning that Princess finally laid still. And though she finally laid still, unfortunately her brain did not comply and she sadly continued to have seizures all throughout the day. Due to her seizures, they did continue to increase her sedatives. While this may not mean much to those reading, a nurse was able to describe that Princess is literally on doses that are really meant for Offensive Lineman in the National Football League. Hence, while we saw that it took quite a bit to even get her calm, she is requiring a substantial amount well more than a girl her size should really require.
And yes, though heavily sedated and on a ventilator, she is still having seizures. Early today it was recorded nearly one an hour and that number did lessen this afternoon. One of the consequences to the heavy sedation is that her blood pressure needs to be closely monitored. Getting to a point of 70/42 they had to momentarily lessen the sedatives to only discover the lessening the sedative opened a floodgate for seizure activity to take place.
To put this ICU experience in perspective, Princess is requiring even greater amounts of sedatives and is still seizing as to our visit just two weeks ago, where her seizure activity had been quelled under less sedation.
The Lord has provided in amazing ways. Your prayers have been answered as we were reunited with our precious Nurse from our last time. Her care, and concern for Princess is so amazing! To those that came today, last night, and over these last few weeks, I don't know how we could every repay you, and I am especially praying for blessing upon blessing for you and your sacrificial love.
Please pray for:
- Princess' seizures to stop (literally, stop)
- Wisdom as I conference with the physicians tomorrow
- For Princess respond favorably to the weaning of the sedatives when that time comes
- Healing from potential damage due to her literally having seizure after seizure for nearly 14 hours
The Fourth Watch
In the New Testament Gospels of Matthew, Mark, and John we are given an account of Jesus walking on the water. This miracle came after Jesus had just served up an amazing feast to over 5,000 people. I am reminded of a message by our Pastor that went into great detail of this miracle....
Jesus, having just finished a busy day of preaching sent his disciples out onto the sea in a boat. As the disciples were midway through the sea, their boat was not able to make any progress because of the waves and a storm. But, during the fourth watch, Jesus came walking to them on the water, and thinking they were seeing a ghost they cried out. Jesus calmly said to them to not be afraid for it was Him. They then received Jesus into their boat and the gospel of John says that immediately, they were on the other side of the sea.
I am reminded too, Princess has loved this passage and message that was brought to us by our pastor. A key point to understand- Sometimes, being in the will of God means we might go through difficult times. Jesus told His disciples to get into the boat and to go to the other side. Doing what He told them to do, they obeyed. Jesus knew they were going to struggle. He knew there would be a storm, yet He told them to go and they obeyed (not fully understanding what lay ahead). And so it was, the sea and water became a problem for them. They became fearful, yet they were doing what the Messiah had told them to do. But then....isn't that some of the best two words...But then, Jesus came to them walking on the water...walking on the very problem that had them scared. And then, having received Him into their boat, they were immediately on the other side.
Have you struggled with something God has called you to? I know I have...I know we have....and it has been our constant trust in Jesus Christ that we are in His plan, and time and time again, He has calmed our fear and taken us to the other side! God is sovereign....That means He is in control of ALL things!
Now all this occurred in the fourth watch...sometime between 3-6 AM. I title this post the Fourth Watch because just after 3 AM Princess was intubated, sedated, and put on the ventilator. Since approximately 4 PM (now yesterday), for nearly a full 12 hours Princess has not stopped seizing. She has been given so much Ativan (rescue drug) that I have lost count, she has been given additional drugs on top of that and still, she is still seizing. Thus, the only thing left to do was to shut her down. And this truly is what needed to happen. Princess has not stopped thrashing about, hallucinating, and seizing literally all day. And if I am honest, she has been having seizures non-stop since this past Thursday.
.
So, here we are in our fourth watch of the night. Princess and I have maybe had one hour of sleep, and now that she is medically out, I pray that the seizures will soon stop (as I type this, she is still seizing). Though I am not fearful at this time, I am praying, like many of you that Jesus will come and take us immediately to the other side
Till my next post, continually praying!
Pray for:
Jesus, having just finished a busy day of preaching sent his disciples out onto the sea in a boat. As the disciples were midway through the sea, their boat was not able to make any progress because of the waves and a storm. But, during the fourth watch, Jesus came walking to them on the water, and thinking they were seeing a ghost they cried out. Jesus calmly said to them to not be afraid for it was Him. They then received Jesus into their boat and the gospel of John says that immediately, they were on the other side of the sea.
I am reminded too, Princess has loved this passage and message that was brought to us by our pastor. A key point to understand- Sometimes, being in the will of God means we might go through difficult times. Jesus told His disciples to get into the boat and to go to the other side. Doing what He told them to do, they obeyed. Jesus knew they were going to struggle. He knew there would be a storm, yet He told them to go and they obeyed (not fully understanding what lay ahead). And so it was, the sea and water became a problem for them. They became fearful, yet they were doing what the Messiah had told them to do. But then....isn't that some of the best two words...But then, Jesus came to them walking on the water...walking on the very problem that had them scared. And then, having received Him into their boat, they were immediately on the other side.
Have you struggled with something God has called you to? I know I have...I know we have....and it has been our constant trust in Jesus Christ that we are in His plan, and time and time again, He has calmed our fear and taken us to the other side! God is sovereign....That means He is in control of ALL things!
Now all this occurred in the fourth watch...sometime between 3-6 AM. I title this post the Fourth Watch because just after 3 AM Princess was intubated, sedated, and put on the ventilator. Since approximately 4 PM (now yesterday), for nearly a full 12 hours Princess has not stopped seizing. She has been given so much Ativan (rescue drug) that I have lost count, she has been given additional drugs on top of that and still, she is still seizing. Thus, the only thing left to do was to shut her down. And this truly is what needed to happen. Princess has not stopped thrashing about, hallucinating, and seizing literally all day. And if I am honest, she has been having seizures non-stop since this past Thursday.
.
So, here we are in our fourth watch of the night. Princess and I have maybe had one hour of sleep, and now that she is medically out, I pray that the seizures will soon stop (as I type this, she is still seizing). Though I am not fearful at this time, I am praying, like many of you that Jesus will come and take us immediately to the other side
Till my next post, continually praying!
Pray for:
- Seizures to stop
- Since we are back in the same unit and floor as last time, that we might get our sweet "Angel Nurse," Sarah.
- Princess' brain will be protected
- Memory will be restored- very apparent that she has lost a lot of memory and cannot even recall her last hospitalization just two weeks ago.
- Peace and renewed strength and faith for me.
- Peace, understanding, protection for Critter.
- Strength for the Mother-in-law, aka Princess' Mommy, aka, the Grandmother, aka, the Queen Mother (Hope that brings a smile to you M3)
Sunday, July 16, 2017
I am the Lord...Do NOT Fear
Growing up I had the privilege to go to a camp called T Bar M. It is truly a second home for me and I have such great memories and God moments there. From time as a camper to working there during summer in both high school and college, it truly had an impact on me. One of my favorite moments at camp was doing praise and worship and singing a song simply title, Isaiah 43. The lyrics are:
When you pass through the waters,
I will be with you,
And the waves they will not
Overcome you.
Do not fear,
For I have redeemed you,
I have called you by name,
You are Mine.
When you pass through the fire,
I will be with you,
And the flames they will not
Consume you.
Do not fear,
For I have redeemed you,
I have called you by name,
You are Mine.
This song comes to mind tonight as it has really been a difficult weekend for Princess. Since being home we were able to slowly adjust back into life, so it seemed. Monday was spent getting reoriented around the home and then deciding to take a small trip to the grocery store and see what memory would come back while at the store. Tuesday was a chance to rest more and take it slow. Wednesday was another small trip followed by an opportunity to spend some very precious time with a friend who has recently been diagnosed with Stage 4 Hodgkin's Lymphoma. By Thursday, Princess was feeling well enough to begin to reorient herself with some things on the computer and even a short visit with Physical Therapy as they will be coming out to the house to help her in strengthening her legs, help with her balance. Additionally, we have a sweet friend who came and took Pierson for a quick play date that allowed for us to get some necessary items taken care of. Unfortunately, whether our work was too much, too soon, or something else, Princess' seizures returned after experiencing a two week hiatus.
While the evening was met with a seizure and a few almost seizure moments, we were soon met with daunting thoughts and even some intimidation of what we just came out of. Friday, we tried to muster through and had a doctor's appointment that served as a distraction and then we were able to have our customary Friday date! While the day provided for some distraction we still ended up with a couple seizures and overall just being completely without energy.
Saturday was a tough day that meant Princess was in bed for most of it and pushed through one aura after the other, though we were grateful to not have to count any seizures. And that brings us to today...
While our hope, our prayers, and our thoughts were that today was going to be much different, it has turned out to really be quite a rough day. While we're not quite to two weeks ago, my mind is bracing for the next moment that I will need to get Princess back to the hospital as the seizures and auras have picked up, quite a bit! Again, we're not too sure what to make of this... Is her threshold just so low right now that anything (literally- emails on the computer, a walk to the mailbox, visual stimuli, strong scents- perfumes, detergents, oils, etc.) can trigger a seizure at any moment. We don't want it to be so, yet just even this evening moving was even too much.
So, to the War Room I go. And I ask you as well. And why I ask you to go there and talk to our Father in Heaven, don't only go there for Princess. We prayed this evening selfishly for our own situation, and yet our words and our hearts were quickly taken to pray for many more that are hurting this evening...
Pray for those that are affected by Cancer- we are praying for you...
Pray for a husband that just lost his wife and is now left to raise twin 2 year old boys...
Pray for a family that is struggling and needing to find a new home..
Pray for a Sister that is grieving her own sister who is severely ill, yet due to family strife, she cannot find her sibling and love on her.
Pray for a grieving family who has just lost a daddy, a husband, a friend.
So, I thank God that He is strengthening me. I thank God that he is strengthening Princess. Truly, the waves rise up and don't overcome us. The fire gets hot, yet we are not consumed. Blessed be the Lord! Truly He is the Lord and there is nothing to fear!
Lastly, thank you to our dear friends, brothers, sisters who are continuing to daily encourage us!
"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior" -Isaiah 43:2,3
When you pass through the waters,
I will be with you,
And the waves they will not
Overcome you.
Do not fear,
For I have redeemed you,
I have called you by name,
You are Mine.
When you pass through the fire,
I will be with you,
And the flames they will not
Consume you.
Do not fear,
For I have redeemed you,
I have called you by name,
You are Mine.
This song comes to mind tonight as it has really been a difficult weekend for Princess. Since being home we were able to slowly adjust back into life, so it seemed. Monday was spent getting reoriented around the home and then deciding to take a small trip to the grocery store and see what memory would come back while at the store. Tuesday was a chance to rest more and take it slow. Wednesday was another small trip followed by an opportunity to spend some very precious time with a friend who has recently been diagnosed with Stage 4 Hodgkin's Lymphoma. By Thursday, Princess was feeling well enough to begin to reorient herself with some things on the computer and even a short visit with Physical Therapy as they will be coming out to the house to help her in strengthening her legs, help with her balance. Additionally, we have a sweet friend who came and took Pierson for a quick play date that allowed for us to get some necessary items taken care of. Unfortunately, whether our work was too much, too soon, or something else, Princess' seizures returned after experiencing a two week hiatus.
While the evening was met with a seizure and a few almost seizure moments, we were soon met with daunting thoughts and even some intimidation of what we just came out of. Friday, we tried to muster through and had a doctor's appointment that served as a distraction and then we were able to have our customary Friday date! While the day provided for some distraction we still ended up with a couple seizures and overall just being completely without energy.
Saturday was a tough day that meant Princess was in bed for most of it and pushed through one aura after the other, though we were grateful to not have to count any seizures. And that brings us to today...
While our hope, our prayers, and our thoughts were that today was going to be much different, it has turned out to really be quite a rough day. While we're not quite to two weeks ago, my mind is bracing for the next moment that I will need to get Princess back to the hospital as the seizures and auras have picked up, quite a bit! Again, we're not too sure what to make of this... Is her threshold just so low right now that anything (literally- emails on the computer, a walk to the mailbox, visual stimuli, strong scents- perfumes, detergents, oils, etc.) can trigger a seizure at any moment. We don't want it to be so, yet just even this evening moving was even too much.
So, to the War Room I go. And I ask you as well. And why I ask you to go there and talk to our Father in Heaven, don't only go there for Princess. We prayed this evening selfishly for our own situation, and yet our words and our hearts were quickly taken to pray for many more that are hurting this evening...
Pray for those that are affected by Cancer- we are praying for you...
Pray for a husband that just lost his wife and is now left to raise twin 2 year old boys...
Pray for a family that is struggling and needing to find a new home..
Pray for a Sister that is grieving her own sister who is severely ill, yet due to family strife, she cannot find her sibling and love on her.
Pray for a grieving family who has just lost a daddy, a husband, a friend.
So, I thank God that He is strengthening me. I thank God that he is strengthening Princess. Truly, the waves rise up and don't overcome us. The fire gets hot, yet we are not consumed. Blessed be the Lord! Truly He is the Lord and there is nothing to fear!
Lastly, thank you to our dear friends, brothers, sisters who are continuing to daily encourage us!
"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior" -Isaiah 43:2,3
Saturday, July 8, 2017
Welcome Home!!!
HOME!
Amazing! Awesome! Incredible! Comfortable! Renewed! We are finally home. After more than a week in the hospital, we are finally home. It has been quite a week and you have been amazing to support us, pray for us, and encourage us. And while we not in the hospital it does appear that this next week we will need to take things slowly as Princess begins to readjust to life and does need to take time in relearning many things.
Critter is super excited to have us back and today seemed to be a good day to just rest, get some much needed family time and most importantly, take things slowly. Our pace today was a nice slow pace and we greatly enjoyed some time with friends who blessed us with lunch and some wonderful time praying together.
As for the future, the physicians still are not quite sure why Princess' sodium level dropped to the level it dropped to. Additionally, they were still amazed by God's work in Princess and how far she has come along in just a short time. Her recovery time is truly amazing and much faster than expected. For now we are humbled and definitely mindful of the brevity of life. Moreover, we are continually grateful for God and His work this past week. Last Thursday, through tears I shared with my family as I opened my phone call:
"Trust in the Lord with all your heart, and do not lean on your own understanding; but in all your ways, acknowledge Him and He will direct your paths." Proverbs 3:5-6
This has been our life verse since the two of us became one in August 2003. And before that, it was my parents, and before that my grandparents. What a legacy! We are honored to carry the torch, and truly, it has been our trust and full faith in Christ alone for our guidance this week. Thank you again and we appreciate all your encouragement!
Amazing! Awesome! Incredible! Comfortable! Renewed! We are finally home. After more than a week in the hospital, we are finally home. It has been quite a week and you have been amazing to support us, pray for us, and encourage us. And while we not in the hospital it does appear that this next week we will need to take things slowly as Princess begins to readjust to life and does need to take time in relearning many things.
Critter is super excited to have us back and today seemed to be a good day to just rest, get some much needed family time and most importantly, take things slowly. Our pace today was a nice slow pace and we greatly enjoyed some time with friends who blessed us with lunch and some wonderful time praying together.
As for the future, the physicians still are not quite sure why Princess' sodium level dropped to the level it dropped to. Additionally, they were still amazed by God's work in Princess and how far she has come along in just a short time. Her recovery time is truly amazing and much faster than expected. For now we are humbled and definitely mindful of the brevity of life. Moreover, we are continually grateful for God and His work this past week. Last Thursday, through tears I shared with my family as I opened my phone call:
"Trust in the Lord with all your heart, and do not lean on your own understanding; but in all your ways, acknowledge Him and He will direct your paths." Proverbs 3:5-6
This has been our life verse since the two of us became one in August 2003. And before that, it was my parents, and before that my grandparents. What a legacy! We are honored to carry the torch, and truly, it has been our trust and full faith in Christ alone for our guidance this week. Thank you again and we appreciate all your encouragement!
Thursday, July 6, 2017
One Week Day 8....Early Post
Well, it really has been a whirlwind of a week. I don't know that I really have any more words to describe what it has been like. In one sense, I'm holding my bride's hand, combing her hair softly back with the other, crying, and telling her that it is okay to go "home." And in another a week later, we both are amazed by what we have just walked through... still holding hands, I might add.
This week has been nothing less than a roller coaster. I'm truthfully not even sure if I know exactly what that means. We have experienced a lot of emotions and I think that truly we are a little reserved and waiting for what is God going to do next. No doubt there is still a hill or two to climb in the days ahead. Princess is still working through several cognitive things- working a cell phone, peoples names, faces, events. Even some newly created memories seem to have just vanished. All in all, she is taking these things in stride and I am amazed at her resilience with all that she has endured and it is evident to see a peace that only God can provide lead her demeanor at this time.
We did get some early visits in the day with our physicians. They are pleased with where Princess is at this present time. Again, ahead of any expectations. Each day, like we have seen, they have seen an improvement and are commenting on how much she is able to communicate- her voice is getting stronger, her mobility- able to move more about the room, and of course the lack of seizures.
Regarding her seizures, or lack there of, it would seem that we are in the process of building her threshold for seizures. Over the last two we have seen that reading on her computer and cell phone can trigger her seizures or at least her auras much more easily than before. With what she has just endured, this isn't surprising, yet a reminder that we will need to be slow with our introduction of certain things.
Today, has been a good day. We were with several friends who provided us food, water, and some GREAT COFFEE! Thank you. Your time, thoughts, smiles, and prayers with us were so welcomed and encouraged us to keep going!
Lastly, if today can continue to be good (No seizures, and no more auras) then our physicians do find it reasonable to send us home tomorrow at some point. We won't fully know until doctor's rounds tomorrow.
Thank you to everyone. Again, it has encouraged us and we are seeing the Great Things He has Done!!! Princess is enjoyed hearing me read, re-read, recap, and share all of your comments, messages, emails, texts, etc. She is even starting to do a little reading and responding of her own.
Please pray:
This week has been nothing less than a roller coaster. I'm truthfully not even sure if I know exactly what that means. We have experienced a lot of emotions and I think that truly we are a little reserved and waiting for what is God going to do next. No doubt there is still a hill or two to climb in the days ahead. Princess is still working through several cognitive things- working a cell phone, peoples names, faces, events. Even some newly created memories seem to have just vanished. All in all, she is taking these things in stride and I am amazed at her resilience with all that she has endured and it is evident to see a peace that only God can provide lead her demeanor at this time.
We did get some early visits in the day with our physicians. They are pleased with where Princess is at this present time. Again, ahead of any expectations. Each day, like we have seen, they have seen an improvement and are commenting on how much she is able to communicate- her voice is getting stronger, her mobility- able to move more about the room, and of course the lack of seizures.
Regarding her seizures, or lack there of, it would seem that we are in the process of building her threshold for seizures. Over the last two we have seen that reading on her computer and cell phone can trigger her seizures or at least her auras much more easily than before. With what she has just endured, this isn't surprising, yet a reminder that we will need to be slow with our introduction of certain things.
Today, has been a good day. We were with several friends who provided us food, water, and some GREAT COFFEE! Thank you. Your time, thoughts, smiles, and prayers with us were so welcomed and encouraged us to keep going!
Lastly, if today can continue to be good (No seizures, and no more auras) then our physicians do find it reasonable to send us home tomorrow at some point. We won't fully know until doctor's rounds tomorrow.
Thank you to everyone. Again, it has encouraged us and we are seeing the Great Things He has Done!!! Princess is enjoyed hearing me read, re-read, recap, and share all of your comments, messages, emails, texts, etc. She is even starting to do a little reading and responding of her own.
Please pray:
- We would continue to share the Gospel of Jesus Christ with those that we are in contact with. We had a brief moment to share the visual of adoption with one of our physicians and that as sons and daughters of Christ (those who have believed in the heart that Jesus is Lord), we are all adopted.
- Princess would still pace herself as we look to transition back home
- Princess would not have any seizures today or tomorrow
- Guidance for our time in the next week- home life, family life, work life
Wednesday, July 5, 2017
Day 7
Sorry for the slower updates. Please note that things are improving and getting better for Princess. While it does appear that we still have some work to do (memory recognition, speech therapy, physical mobility skills), Princess is making incredible strides exceeding the doctor's expectations. We still do not know when she might be released, and I think that it keeps being pushed back a day or two later (Right now looks like Friday or Saturday).
As of today, our Doctor is looking not so much at the seizures, and is more focused and concerned about her initial low sodium reading our first day in the ER. This serves as an outlier and most likely the reason why Princess was constantly having seizures and why she was in a prolonged 3 hour seizure. And while this may be the actual cause, there is not anything to explains why her levels were so low as now her levels are normal and have stayed normal since coming to the hospital and receiving treatment.
Praise the Lord, we have still not recorded any seizures since Friday morning. We did feel a little bit of setback last night and this morning as she had a couple auras. By definition these are seizures, but not what we have ever referred to as her seizures and what the doctor is classifying for us as a seizure. And what is interesting is that these auras have come about as Princess has allowed herself to do a little reading both on her cell phone and computer. We have known that reading can be a trigger for her, and it would seem that her threshold is still not as strong as what we need it to be so that she can do basic reading- emails, letters, books for Critter.
Therefore, we did what needed to be done and then sat by the hospital window on a couch for the rest of the day and just got to talk and revisit the events of these last few days. It was good to "catch up" and I had a chance to share with Princess all the sweet messages that have poured in over these last 7 days.
Another praise, Princess did finally get to sleep a full night last night and had a restful night.
Prayer Requests:
Thank you all again for following and praying. We are blown away by God's provision and literally to be just a week out from when she nearly was taken Home.
As of today, our Doctor is looking not so much at the seizures, and is more focused and concerned about her initial low sodium reading our first day in the ER. This serves as an outlier and most likely the reason why Princess was constantly having seizures and why she was in a prolonged 3 hour seizure. And while this may be the actual cause, there is not anything to explains why her levels were so low as now her levels are normal and have stayed normal since coming to the hospital and receiving treatment.
Praise the Lord, we have still not recorded any seizures since Friday morning. We did feel a little bit of setback last night and this morning as she had a couple auras. By definition these are seizures, but not what we have ever referred to as her seizures and what the doctor is classifying for us as a seizure. And what is interesting is that these auras have come about as Princess has allowed herself to do a little reading both on her cell phone and computer. We have known that reading can be a trigger for her, and it would seem that her threshold is still not as strong as what we need it to be so that she can do basic reading- emails, letters, books for Critter.
Therefore, we did what needed to be done and then sat by the hospital window on a couch for the rest of the day and just got to talk and revisit the events of these last few days. It was good to "catch up" and I had a chance to share with Princess all the sweet messages that have poured in over these last 7 days.
Another praise, Princess did finally get to sleep a full night last night and had a restful night.
Prayer Requests:
- Princess would continue to regain strength and cognitive abilities- it is apparent that a lot of her memory has been affected and at least the last few weeks has been "erased." Additionally, recall of names and faces is difficult. While it is not only constrained to just these things, there are many other things that she just doesn't have recollection of.
- Princess would remain seizure-free and her threshold would increase
- Princess would be able to recall tasks and items that many of us take for granted- i.e. a cell phone- I had to teach her the basics of her phone yesterday, how to use her computer- worked today on logging in, internet, email.
- That we would take our time and not be in a rush, rather enjoy this time together and maximize our Husband and Wife roles as well as our Parent role.
Thank you all again for following and praying. We are blown away by God's provision and literally to be just a week out from when she nearly was taken Home.
Blessing and Encouragement
An update will be coming soon with specific prayer requests as the Physicians are continually amazed by the improvement and again, remarkable steps that Princess is taking.
However, A Meal-Train has been set up and folks are encouraged to follow the link below to sign up. Any help or support is greatly appreciated.
To view the needs and/or sign up: https://www.mealtrain.com/trains/7n1nr1
However, A Meal-Train has been set up and folks are encouraged to follow the link below to sign up. Any help or support is greatly appreciated.
To view the needs and/or sign up: https://www.mealtrain.com/trains/7n1nr1
Monday, July 3, 2017
"Remarkable" -Day 5
"Remarkable" said the Neurologist to us today. Princess' progress is nothing short of a miracle. We were transferred from the ICU today as she has continued to progressively get better. Truly, she is ahead of schedule or any progress that the physicians thought she would make. Better, what an answer to prayer and to show that God is in control and we just have to continue to put our full trust and faith in Him. He is working out a plan and He hears the many that have gone before us in prayer. Humbly, thank you. And again, to the medical community, with what Princess just went through less than a week ago and to be where she is today, it is REMARKABLE!
Princess indeed has had her best day today over these last 5 days. The first milestone was when she got to stand today for the first time in 5 days. While wobbly and shaky, I am certain after seeing her today and her determination, she will be fully able to move and walk unassisted soon. Her strength is very weak and she has shared today that she is extremely sore. Understandably, she is still very tired and soon after we were transferred our of the ICU, we both were able to take a 2 hour nap.
Princess' mother, and myself were able to share what happened today and reality for Princess had set in for her. Obviously heavy, the weight of this whole ordeal is hard to digest mentally and emotionally. It has been good to be able to just sit with Princess, hold her hand, hug her, and pray together thanking God for this journey and strength in it.
So today was a day to get settled into our new "home" for the next few days, rest and get ready for a physically active day tomorrow. We anticipate that physical therapy will be by at some point to begin working on Princess' walking, strength and coordination, as well as improvement of speech (if needed- in the last day her voice is becoming stronger).
I hope to at the end of this journey list all the pray requests and then display how God has answered them. It is truly amazing, and I should not be thinking of it as a surprise.
One key point that I think I need to make that I have not...Princess has continued to be seizure-free since Friday at 9AM. While this is awesome, in the last two years going 4 days without a seizure is quite common. What is for us very amazing, is that we have not made any changes in medicines. We are exactly at the same 95% reduction of one of her anti-seizure meds, 86% reduction of her other seizure med, and still doing the same dose of CBD (Hemp Oil).
So, Lord willing, we WILL have a great day tomorrow! I would expect that we will be in the hospital through Wednesday returning home Thursday...
Please Pray:
Princess indeed has had her best day today over these last 5 days. The first milestone was when she got to stand today for the first time in 5 days. While wobbly and shaky, I am certain after seeing her today and her determination, she will be fully able to move and walk unassisted soon. Her strength is very weak and she has shared today that she is extremely sore. Understandably, she is still very tired and soon after we were transferred our of the ICU, we both were able to take a 2 hour nap.
Princess' mother, and myself were able to share what happened today and reality for Princess had set in for her. Obviously heavy, the weight of this whole ordeal is hard to digest mentally and emotionally. It has been good to be able to just sit with Princess, hold her hand, hug her, and pray together thanking God for this journey and strength in it.
So today was a day to get settled into our new "home" for the next few days, rest and get ready for a physically active day tomorrow. We anticipate that physical therapy will be by at some point to begin working on Princess' walking, strength and coordination, as well as improvement of speech (if needed- in the last day her voice is becoming stronger).
I hope to at the end of this journey list all the pray requests and then display how God has answered them. It is truly amazing, and I should not be thinking of it as a surprise.
One key point that I think I need to make that I have not...Princess has continued to be seizure-free since Friday at 9AM. While this is awesome, in the last two years going 4 days without a seizure is quite common. What is for us very amazing, is that we have not made any changes in medicines. We are exactly at the same 95% reduction of one of her anti-seizure meds, 86% reduction of her other seizure med, and still doing the same dose of CBD (Hemp Oil).
So, Lord willing, we WILL have a great day tomorrow! I would expect that we will be in the hospital through Wednesday returning home Thursday...
Please Pray:
- No seizures for Princess
- Princess would be able to make it through physical therapy
- Her soreness and other impacts of the ventilator would subside.
- Her coordination and motor skills would strengthen
- Her memory would improve (this being a big one as many of you know Princess has an incredible memory and it has taken a toll. People, faces, and events have seem to just disappeared in her mind).
- Provision/Protection for Critter- She desparately wants her Mommy back home.
- Provision of strength for Gamma (Princess' mother-aka THE MOTHER IN LAW). She has been incredible taking care of Critter, manning "the fort," and traveling back and forth to the hospital.
Sunday, July 2, 2017
ICU- Day 4----A day of Rest
Rain has always been my favorite weather system (not too sure if that is correct meteorlogically speaking). In fact, I have been loving it even more this year as I didn't have to turn on our sprinklers until mid June this year. A testament to the blessing that can come from rain. The rain that was provided, kept everything green. It kept everything fed. It kept everything nourished. It was rain that was provided during Noah's Great Flood that would usher in a new creation and provided a rainbow.
A rainbow...A sign of promise to never again destroy the world with a flood. And yet, it was a storm. A torrential downpour that ushered in a new beginning. It was a storm that ushered in a promise of new start.
And so it is, we have been going through a storm. while the storm has been going on for 11 years, these past few days have been something that I don't think I could have comprehended.
It has been a blessing to have Princess "back." While it appears the next few days are still going to be tough, it is hard to hold back with her and want to talk and tell her all that has happened and the many, many, many faithful friends, prayer warriors, countless blessings that have been poured out upon us.
So while yesterday we were able to share some tears, grins, and even some chuckles, she is needing this day and the next few to just rest. What her body went through last Wednesday/Thursday I'm not really sure how she is where she is today.
Well, actually, I do. It is only because of our Lord Jesus Christ and His saving power through God the Father! It truly has been unique to have several physicians come by with a report and share the news of no seizures, clean CT, clean MRI and almost be astonished themselves that they were sharing this report. Especially since just a day or so ago Princess' situation was touch and go. But, we know that God is Bigger and He is in the business of doing great things.
In my prayer that I alluded and to earlier in this blog, I prayed a very hard prayer. I asked of God two options for Princess. As of today, God has answered my second request, and has made it abundantly clear that He is not finished with Princess yet and therefore, answering my first request as well.
So today is Sunday. The day we try to rest, just as God rested on the 7th day. And it is apparent that Princess needs to do just that. She is so weary and is in pain. Yet, we rejoice that she is awake, breathing, even got to be reunited with Critter today! Critter was so sweet in constantly saying, "Hi Mommy....Hi Mommy..." Her little kisses all over Princess' hands.
So thank you for your prayers. As many of you have messaged me, I do need strength and am growing weary. May God richly and abundantly supply me.
As I have shared, God is truly answering your prayers. Please join me in praying for:
So just as the rain came, a promise was provided and there was a new start. I pray that the Lord would use this current rain storm for His Glory and we look forward to what He has in store for us next.
A rainbow...A sign of promise to never again destroy the world with a flood. And yet, it was a storm. A torrential downpour that ushered in a new beginning. It was a storm that ushered in a promise of new start.
And so it is, we have been going through a storm. while the storm has been going on for 11 years, these past few days have been something that I don't think I could have comprehended.
It has been a blessing to have Princess "back." While it appears the next few days are still going to be tough, it is hard to hold back with her and want to talk and tell her all that has happened and the many, many, many faithful friends, prayer warriors, countless blessings that have been poured out upon us.
So while yesterday we were able to share some tears, grins, and even some chuckles, she is needing this day and the next few to just rest. What her body went through last Wednesday/Thursday I'm not really sure how she is where she is today.
Well, actually, I do. It is only because of our Lord Jesus Christ and His saving power through God the Father! It truly has been unique to have several physicians come by with a report and share the news of no seizures, clean CT, clean MRI and almost be astonished themselves that they were sharing this report. Especially since just a day or so ago Princess' situation was touch and go. But, we know that God is Bigger and He is in the business of doing great things.
In my prayer that I alluded and to earlier in this blog, I prayed a very hard prayer. I asked of God two options for Princess. As of today, God has answered my second request, and has made it abundantly clear that He is not finished with Princess yet and therefore, answering my first request as well.
So today is Sunday. The day we try to rest, just as God rested on the 7th day. And it is apparent that Princess needs to do just that. She is so weary and is in pain. Yet, we rejoice that she is awake, breathing, even got to be reunited with Critter today! Critter was so sweet in constantly saying, "Hi Mommy....Hi Mommy..." Her little kisses all over Princess' hands.
So thank you for your prayers. As many of you have messaged me, I do need strength and am growing weary. May God richly and abundantly supply me.
As I have shared, God is truly answering your prayers. Please join me in praying for:
- Princess' recovery. They are looking to move her out of ICU and into a normal hospital room.
- Princess' ability to regain her voice and strength
- Her vision to be restored as she has shared that it is very difficult for her to see clearly.
- For her motor skills as she is extremely weak and even picking up a Kleenex seems to be a chore.
- For our "first" walk. Possibly tomorrow they will try to get her out of bed.
- For he memory and recollection. Short Term memory seems to be quite effected.
- For her comfort and rest that would come. SHE NEEDS SLEEP!!!
So just as the rain came, a promise was provided and there was a new start. I pray that the Lord would use this current rain storm for His Glory and we look forward to what He has in store for us next.
ICU Update Day 3-
First, thank you!!! I will update the blog later as I fell asleep and have had doctor rounds and computer issues this morning. The positive: process was extubated yesterday afternoon around 2:30. We rejoiced and then welcomed Princess back. We shared many tears, grins, and smiles. I even got to kiss her lips!!!
Princess was incredibly sedated and did have extreme difficulty speaking and moving. Another praise to add, no seizure activity had been detected since 9 AM Friday!!!
Today has been a day to try to work on swallowing, motor skills, and working on speaking. She is still pretty lethargic, and a praise is that she will be moved out of ICU later today.
Assuming I resolve the computer issues, and I don't fall asleep, I will try to update this evening.
Than you for all that y'all have done. Your messages, texts, emails are all very encouraging. Princess needs your prayers and I'm anxious to see what the next 24 hours will bring.
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