WOW!!! How amazing to see prayers pour in and see the Lord answer! Critter has had a good day today and thanks to your many suggestions and recommendations on taking her medicine, we successfully gave Critter her medicine this morning without any flinching or hestitation. Both Princess and I were like little kids on Christmas morning, filled with excitement. Talk about trying to keep a secret!!! So thanks again!
So what worked? We decided to divide her medicine among all her choices at breakfast. We ended up doing 2 ml in orange juice, 1 ml in her yogurt, and then 1 ml more in her pancake. Again, it worked and mom and dad were greatly relieved!
Overall, Critter is doing much better. She even got 11 hours of sleep last night which was wonderful for everyone! We pray that she will continue to get better each day.
Princess has had a different kind of day. It started off incredibly sweet with some good cuddles from Critter. However, after waking, Princess' heart rate dramatically jumped. This was similar to what we experienced in the hospital. She did take a moment to rest. Since Critter is sick we did not go to church. In hindsight this was probably best as Princess then spent the rest of the morning and afternoon exhausted with no energy. Please pray that Princess would be restored. That these seizures would stop. At the time of this post, she has already had 3 seizures!!! Also pray that she would be able to maximize her time with Critter. It was really special for her to get some "Mommy-time" this past week before the seizures increased and even yesterday taking care of Critter.
Sunday, September 29, 2013
Saturday, September 28, 2013
Pneumonia
"Lord, please protect our family. Please watch over our little one tonight while she sleeps. Please bring relief and healing to Critter."
This is our prayer this evening. Critter, as you know from our earlier posts, got sick earlier in the week with Croup. After getting better, she actually had a very rough night last night sleeping and probably only slept about 6 hours as opposed to usual 11 to 12 hours. Her short night was due to being up coughing and not being able to breathe. With such a rough night, we took her to an after hours clinic that sees patients on the weekends. It was here that Critter was in fact diagnosed with pneumonia. Her right lung is full with pneumonia and her left lung is showing some infiltrate...so very scary! We are especially concerned as we don't fully know what to do as Critter has never really been sick.
In addition to the pneumonia difficulties, we are actually having an even tougher time getting her antibiotics down. Any tips you have would be greatly appreciated as Critter wants nothing to do with her medicine and throws it all up if we force it. HELP!!!
So please join us in praying for Critter's healing and that she will beat this pneumonia! We are also praying that she will get some great rest this evening!
Thank you for your continued prayers on our behalf. We're so thankful that we are back home from the hospital during all this.
This is our prayer this evening. Critter, as you know from our earlier posts, got sick earlier in the week with Croup. After getting better, she actually had a very rough night last night sleeping and probably only slept about 6 hours as opposed to usual 11 to 12 hours. Her short night was due to being up coughing and not being able to breathe. With such a rough night, we took her to an after hours clinic that sees patients on the weekends. It was here that Critter was in fact diagnosed with pneumonia. Her right lung is full with pneumonia and her left lung is showing some infiltrate...so very scary! We are especially concerned as we don't fully know what to do as Critter has never really been sick.
In addition to the pneumonia difficulties, we are actually having an even tougher time getting her antibiotics down. Any tips you have would be greatly appreciated as Critter wants nothing to do with her medicine and throws it all up if we force it. HELP!!!
So please join us in praying for Critter's healing and that she will beat this pneumonia! We are also praying that she will get some great rest this evening!
Thank you for your continued prayers on our behalf. We're so thankful that we are back home from the hospital during all this.
From M's Mom
We have come to you so often asking for your prayers and you have been so faithful.
Hopefully, there is not an allotment per family, because we need you again.
Critter was diagnosed with Croup on Tuesday and was responding well to the treatment. However, after a sleepless night with difficult breathing and a high temp, the Doctor on call at our Pediatrician feels she may be experiencing a rebound that has progressed to a respiratory infection, bronchitis or pneumonia.
We were directed to a pediatric urgent care in Garland and they don't open until noon!!
Are you kidding me??
It appears that all of the offices we have contacted don't have Saturday hours until next month. Please pray with us for our precious girl and for all of this to be easily resolved.
M was allowed to come home from the hospital with orders for complete bed rest and needless to say that has not happened....and a seizure this morning has further complicated this process.
Thanking you in advance for your love and prayers!
Hopefully, there is not an allotment per family, because we need you again.
Critter was diagnosed with Croup on Tuesday and was responding well to the treatment. However, after a sleepless night with difficult breathing and a high temp, the Doctor on call at our Pediatrician feels she may be experiencing a rebound that has progressed to a respiratory infection, bronchitis or pneumonia.
We were directed to a pediatric urgent care in Garland and they don't open until noon!!
Are you kidding me??
It appears that all of the offices we have contacted don't have Saturday hours until next month. Please pray with us for our precious girl and for all of this to be easily resolved.
M was allowed to come home from the hospital with orders for complete bed rest and needless to say that has not happened....and a seizure this morning has further complicated this process.
Thanking you in advance for your love and prayers!
Friday, September 27, 2013
A Day's End....Finally
Oh the joy to finally be home. It has truly been great being back home and having the family back together as one under the same roof! Princess has really enjoyed feeling good these last few days and it has especially felt good as she has truly been able to take care of Critter while she was dealing with croup.
Critter had a much better night and woke feeling much better. The game-plan was to monitor her during the day and then follow up with the doctor to get their assessment. The blessing of the day was that Critter was 90% better today according to the doctor and she felt that Critter would be back to her old self in no time.
While Critter was feeling much better, Princess on the other hand woke up having a seizure and a headache that persisted throughout the day. Miss C was so sweet that while B was out on an appointment, Miss C grabbed an ice pack and made Princess lie down and try to rest. And how miserable the headache got. After I got home, Princess was still in bed with a throbbing headache and to compound things, she felt like she was on the verge of having a big seizure. Something just wasn't right. Even at the time of this post, Princess' headache is still very present.
Meanwhile, I was able to get in an appointment for work (felt good), and then spent over an hour at the Pharmacy trying to get the meds the doc called in on Tuesday. And while that was going on, the dealership that I took my truck to was calling to say my truck was being fixed. Not too bad! Thanks by the way for the multiple folks that either called or texted me about a vehicle. You guys rock and were such a blessing to realize that even if my vehicle was not able to work, we had some options. So the cool thing was that the Dealership was in fact able to fix my truck and this afternoon I was able to get my truck! YEA!!!
So all in all it wasn't the best of all days, but things worked out. We even had a surprise visitor come over and share some of her precious hugs and memories..."Mrs. L"!!! Mrs. L. has just been so sweet in helping to care for Critter and had a surprise to drop off for both Critter and Mommy. Much to Critter's delight, Critter was able to get her very own painted pumpkin! How precious! And as if her coming was not special already, she brought us a gift that will help us with grocery trips in the next few weeks.
To end the day we did enjoy getting back to the dinner table and dine together as a family. However, we did hurry as we had to get ready for a visitation service for a dear friend's brother who had passed away.
Prayers:
Critter had a much better night and woke feeling much better. The game-plan was to monitor her during the day and then follow up with the doctor to get their assessment. The blessing of the day was that Critter was 90% better today according to the doctor and she felt that Critter would be back to her old self in no time.
While Critter was feeling much better, Princess on the other hand woke up having a seizure and a headache that persisted throughout the day. Miss C was so sweet that while B was out on an appointment, Miss C grabbed an ice pack and made Princess lie down and try to rest. And how miserable the headache got. After I got home, Princess was still in bed with a throbbing headache and to compound things, she felt like she was on the verge of having a big seizure. Something just wasn't right. Even at the time of this post, Princess' headache is still very present.
Meanwhile, I was able to get in an appointment for work (felt good), and then spent over an hour at the Pharmacy trying to get the meds the doc called in on Tuesday. And while that was going on, the dealership that I took my truck to was calling to say my truck was being fixed. Not too bad! Thanks by the way for the multiple folks that either called or texted me about a vehicle. You guys rock and were such a blessing to realize that even if my vehicle was not able to work, we had some options. So the cool thing was that the Dealership was in fact able to fix my truck and this afternoon I was able to get my truck! YEA!!!
So all in all it wasn't the best of all days, but things worked out. We even had a surprise visitor come over and share some of her precious hugs and memories..."Mrs. L"!!! Mrs. L. has just been so sweet in helping to care for Critter and had a surprise to drop off for both Critter and Mommy. Much to Critter's delight, Critter was able to get her very own painted pumpkin! How precious! And as if her coming was not special already, she brought us a gift that will help us with grocery trips in the next few weeks.
To end the day we did enjoy getting back to the dinner table and dine together as a family. However, we did hurry as we had to get ready for a visitation service for a dear friend's brother who had passed away.
Prayers:
- Headache is still pretty bad for Princess, please pray that it would cease
- Communication with our doc now that we are not in the hospital and we need to know what to do for her on days like today.
- Critter would continue to get better
- Healing for Princess!
Wednesday, September 25, 2013
Croup, there it is....
Pardon the '90s one hit wonder pun...
Turns out she got much worse this afternoon.
We are praying this is a one time thing and it will be over soon.
B spent almost the entire day on the phone with insurance companies & car dealerships to try to get his truck repaired. Turns out that if he replaced the ignition cylinder (rather than rebuilding it), it requires some type of special code from Ford due to the anti-theft stuff on the truck. Ford isn't being helpful at all. Does anyone have any good connections with Ford? They are seriously being very difficult. We need them to provide "the code" to the dealership to reset the anti-theft.
On the other hand, our local Chevy dealership fought for B's business. So, this afternoon our insurance company was going to tow his truck to the dealership. They thought they would arrive about 3:45p. Miss P woke up from her nap unable to really breathe at all. Mom stopped by around that time and we all agreed she needed to get in to see the doc quickly.
About that time the towing company called to say they were sitting in the parking lot looking for B's truck. So, he had to jump in Miss C's car and race up there while C, Miss P, and I jumped in the car and rushed to the doc's office.
Turns out they didn't bring a big enough tow truck to get his truck. So, they had to call for a flat bed. In the meantime, B kept working on it. He was able to get it started and he drove it to the dealership. Mom then took him back to C's car & he met us just in time at the doc's office.
Doc said it's definitely croup and her airway is so constricted she feels the need to act quickly. So, she wanted to do a steroid treatment and epinephrine nebulizer. Miss P could not stand the medicine. She was spitting it all over the place, crying hysterically, and then threw everything up. It was so heartbreaking. That's when B arrived and he tried every trick up his sleeve, too. She would not take the medicine. So, they moved on to the nebulizer and she fought that like crazy with plenty of tears involved, as well.. Then, all of a sudden, she stopped, calmed down, took it in her own hands and held it for the rest of the treatment.
We are so proud of her! She did such a good job. Then, they had to come in and give her a shot for the medicine that she could not take orally. She was one tough cookie. She barely flinched while the rest of us were almost in tears because we didn't want her to be hurt by the shot after all she had been through...she even got the doc to stay in and hold her hand while the nurse gave the shot.
Once we left the office, she got a treat of Sonic Ice and we headed home, ate dinner, did a few steam showers, and then she sat on our bed and read her new book with Daddy!
So, once she finished her book, she went to bed almost immediately. Please pray that she makes it through the night, gets the rest she needs, and gets well quickly.
As well, they don't have a good estimate on when B's truck will be ready. So, please say a prayer that it's ready tomorrow or that we can find a loaner car so that he can get to work, etc.
Turns out she got much worse this afternoon.
We are praying this is a one time thing and it will be over soon.
B spent almost the entire day on the phone with insurance companies & car dealerships to try to get his truck repaired. Turns out that if he replaced the ignition cylinder (rather than rebuilding it), it requires some type of special code from Ford due to the anti-theft stuff on the truck. Ford isn't being helpful at all. Does anyone have any good connections with Ford? They are seriously being very difficult. We need them to provide "the code" to the dealership to reset the anti-theft.
On the other hand, our local Chevy dealership fought for B's business. So, this afternoon our insurance company was going to tow his truck to the dealership. They thought they would arrive about 3:45p. Miss P woke up from her nap unable to really breathe at all. Mom stopped by around that time and we all agreed she needed to get in to see the doc quickly.
About that time the towing company called to say they were sitting in the parking lot looking for B's truck. So, he had to jump in Miss C's car and race up there while C, Miss P, and I jumped in the car and rushed to the doc's office.
Turns out they didn't bring a big enough tow truck to get his truck. So, they had to call for a flat bed. In the meantime, B kept working on it. He was able to get it started and he drove it to the dealership. Mom then took him back to C's car & he met us just in time at the doc's office.
Doc said it's definitely croup and her airway is so constricted she feels the need to act quickly. So, she wanted to do a steroid treatment and epinephrine nebulizer. Miss P could not stand the medicine. She was spitting it all over the place, crying hysterically, and then threw everything up. It was so heartbreaking. That's when B arrived and he tried every trick up his sleeve, too. She would not take the medicine. So, they moved on to the nebulizer and she fought that like crazy with plenty of tears involved, as well.. Then, all of a sudden, she stopped, calmed down, took it in her own hands and held it for the rest of the treatment.
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| In Daddy's arms being a big girl and getting the treatment. |
We are so proud of her! She did such a good job. Then, they had to come in and give her a shot for the medicine that she could not take orally. She was one tough cookie. She barely flinched while the rest of us were almost in tears because we didn't want her to be hurt by the shot after all she had been through...she even got the doc to stay in and hold her hand while the nurse gave the shot.
Once we left the office, she got a treat of Sonic Ice and we headed home, ate dinner, did a few steam showers, and then she sat on our bed and read her new book with Daddy!
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| What a Daddy will do for his girl. Yes, this is one of my headbands and he let us put it on him for her!!! |
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| That's my man and I'm so smitten with him!! Wow!!! |
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| See how her hair is starting to curl from all of the steam showers. She wanted to take everyone's temp, including the pillow, blankets, etc. |
So, once she finished her book, she went to bed almost immediately. Please pray that she makes it through the night, gets the rest she needs, and gets well quickly.
As well, they don't have a good estimate on when B's truck will be ready. So, please say a prayer that it's ready tomorrow or that we can find a loaner car so that he can get to work, etc.
The Day That Would Not End
As I begin writing this, the clock shows that there are 15 minutes remaining in the day. We are ready for this day to end!!
The blessing is that we got the OK from the doc to hurry and get out of the hospital. I started yanking the leads off my head as soon as we heard it was ok. We didn't even wait for the EEG tech. I threw my hair back in a pony tail despite all of the glue in my hair! We wanted to get to our girl!
B went ahead and started taking stuff to the car so that it would be ready to go as soon as they let us leave. The nurse even rushed her paperwork when I told her how quickly we needed to get to P. We got in the car and rushed back home. As Mom put it, "God parted the seas for us." The trip has been taking Mom close to an hour and we made it in time to get Miss P from school.
This is the minute we got there. She was helping her teachers clean up the classroom and asked me to wait while she put the books away. Then, she came running with hugs. Wow!!!! She immediately wanted the camera and started taking her own pics.
So, I'm not supposed to carry anything heavy or walk much. However, I couldn't stand the idea of not snuggling with her non-stop.
When we picked her up, her teacher asked if she had asthma because she seemed to be hoarse & wheezing. We noticed it, but it didn't seem that bad. We got home, snuggled, and put her down for a nap. She woke up after a very short time and sounded awful. I called the pediatrician's office and they were very concerned and wanted her to come in, but the doc had to leave. So, one of our long time family friends (I was her flower girl) is a Pediatric Nurse Practitioner. My doc's office said they've only heard wonderful things about her. So, we started trying to reach her. Her precious husband met us at her office and got us in the back door because she had so many other after hours patients waiting. What a gift!!!!! Thank you, Lord!!
The Lord heard your prayers as the NP believes that Miss P has a virus, but that it's not in her lungs like croup. As of now, B is in her room trying to help her sleep because it keeps waking her up. Poor baby! Please pray that it clears up quickly. She is so tough, but I want her to feel better.
While Miss P was sleeping, B ran to Mom's house to fix her TV. Thus, he ended up meeting us at the pediatrician's office. When it was time to leave, his key got stuck in the ignition and the truck wouldn't start. He is old school and loves everything original on his truck. He takes such great care of his automobiles. However, a few years ago, the ignition cylinder broke. The truck has continued to work just fine, though. You just have to know the secret to get the key out when you are done driving. It's never been a problem. However, it seems as though the parking guys at the hospital broke it today. So, when we tried to leave the doc's office...B tried everything he knew to do and it just wasn't working. Miss P even gave him her set of plastic keys to see if they would work!! Anyway, we had to leave his truck in the parking lot of the doc's office. He will have to go tomorrow and buy the part and repair the truck in the parking lot or get it towed to the dealership and get it repaired.
You just couldn't have written more in to today and it couldn't have been crazier. Nothing like getting home from a month long stay in the hospital to find that you have to rush your daughter to the doc to then have your car break down...Only the Lord could foresee it and only the Lord could carry us through. It is now after midnight and I pray that Wednesday will prove to be much calmer.
We continue to covet your prayers!
Please pray:
Each and every one of you amazes us. Your messages to us have been so encouraging and your prayers are being answered.
The blessing is that we got the OK from the doc to hurry and get out of the hospital. I started yanking the leads off my head as soon as we heard it was ok. We didn't even wait for the EEG tech. I threw my hair back in a pony tail despite all of the glue in my hair! We wanted to get to our girl!
B went ahead and started taking stuff to the car so that it would be ready to go as soon as they let us leave. The nurse even rushed her paperwork when I told her how quickly we needed to get to P. We got in the car and rushed back home. As Mom put it, "God parted the seas for us." The trip has been taking Mom close to an hour and we made it in time to get Miss P from school.
This is the minute we got there. She was helping her teachers clean up the classroom and asked me to wait while she put the books away. Then, she came running with hugs. Wow!!!! She immediately wanted the camera and started taking her own pics.
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| Pic of Daddy! |
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| Pic of Gamma, the woman that made it possible for B to stay by my side all day and all night for an entire month. |
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| With my girl!!!! |
When we picked her up, her teacher asked if she had asthma because she seemed to be hoarse & wheezing. We noticed it, but it didn't seem that bad. We got home, snuggled, and put her down for a nap. She woke up after a very short time and sounded awful. I called the pediatrician's office and they were very concerned and wanted her to come in, but the doc had to leave. So, one of our long time family friends (I was her flower girl) is a Pediatric Nurse Practitioner. My doc's office said they've only heard wonderful things about her. So, we started trying to reach her. Her precious husband met us at her office and got us in the back door because she had so many other after hours patients waiting. What a gift!!!!! Thank you, Lord!!
The Lord heard your prayers as the NP believes that Miss P has a virus, but that it's not in her lungs like croup. As of now, B is in her room trying to help her sleep because it keeps waking her up. Poor baby! Please pray that it clears up quickly. She is so tough, but I want her to feel better.
While Miss P was sleeping, B ran to Mom's house to fix her TV. Thus, he ended up meeting us at the pediatrician's office. When it was time to leave, his key got stuck in the ignition and the truck wouldn't start. He is old school and loves everything original on his truck. He takes such great care of his automobiles. However, a few years ago, the ignition cylinder broke. The truck has continued to work just fine, though. You just have to know the secret to get the key out when you are done driving. It's never been a problem. However, it seems as though the parking guys at the hospital broke it today. So, when we tried to leave the doc's office...B tried everything he knew to do and it just wasn't working. Miss P even gave him her set of plastic keys to see if they would work!! Anyway, we had to leave his truck in the parking lot of the doc's office. He will have to go tomorrow and buy the part and repair the truck in the parking lot or get it towed to the dealership and get it repaired.
You just couldn't have written more in to today and it couldn't have been crazier. Nothing like getting home from a month long stay in the hospital to find that you have to rush your daughter to the doc to then have your car break down...Only the Lord could foresee it and only the Lord could carry us through. It is now after midnight and I pray that Wednesday will prove to be much calmer.
We continue to covet your prayers!
Please pray:
- Miss P will get well quickly and whatever this is will clear up without meds.
- B will be able to get his truck fixed quickly and affordably.
- B will be able to get some work done tomorrow since he's not been able to work while by my side.
- The Lord will grant seizure freedom-please, Lord, no more seizures.
- Mom will be able to rest
- I will have the energy to care for Miss P tomorrow, but I will exercise wisdom as I really pushed it today and started to feel yucky....
Each and every one of you amazes us. Your messages to us have been so encouraging and your prayers are being answered.
Tuesday, September 24, 2013
Quick Prayers
More to come...
URGENT prayers for Miss P. When we picked her up from school she was hoarse & coughing pretty badly. They asked if she had asthma. When she woke up from her nap, she's even worse. Our doc's office thinks she has a bad case of croup, but doc had to go get her son and couldn't stay. So, we're trying to get her in to a doc quickly to avoid the hospital.
Pray my baby will be okay...
URGENT prayers for Miss P. When we picked her up from school she was hoarse & coughing pretty badly. They asked if she had asthma. When she woke up from her nap, she's even worse. Our doc's office thinks she has a bad case of croup, but doc had to go get her son and couldn't stay. So, we're trying to get her in to a doc quickly to avoid the hospital.
Pray my baby will be okay...
I Need a Miracle
And in your hour of desperation
Know you’re not the only one
Prayin’, “Lord above, I need a miracle”
“Lord above, I need a miracle”
Know you’re not the only one
Prayin’, “Lord above, I need a miracle”
“Lord above, I need a miracle”
Can you see the joy on my face? Soon after we posted and you all started praying, the Interventional Radiologist came walking in and said, "let's get that thing out of there." I asked if he had seen the labs to know that my levels were too low. He said he saw them and wasn't concerned, we would just have to wait a little longer for homeostasis. So, the tears were pouring and we were shouting, "Praise the Lord!" B had just gone down to talk to the PLEX team to find out what we could do to get the levels raised. I called him and told him to hurry back and he came walking in the door!!! WHOOP!!!
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| Cutting the stitches. |
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| About to pull it out of my neck/chest. |
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| This is what it actually looks like...that was in my jugular vein. |
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| B says the hole it left looks like someone got me with a bb gun. |
So, here is the next prayer:
I still want to be able to surprise P and pick her up from school (it will be only the second time this year!!). We need to leave in about 15 minutes for that to happen. So, it seems near impossible. However, we are begging for a miracle!! Please beg with us!!! B is packing the car and doing all he can to have everything ready...
Proverbs 16:9
In their hearts humans plan their course,
but the Lord establishes their steps.
Proverbs 16:9
Well, we had our plans in place.
My fibrinogen levels would be over 100 yesterday
They would remove the catheter
We would stay over night for observation with the EEG
They would send us home today and we could surprise Miss P
INSTEAD:
My fibrinogen levels were 85
They didn't remove the catheter
So, the new plans:
We would stay last night for observation with the EEG
They would draw my fibrinogen levels this morning and they would be over 100
They would remove the catheter
They would remove the EEG leads
They would send us home today and we could surprise Miss P
INSTEAD:
We stayed overnight for observation with the EEG
My BP got super low: 80/43
My fibrinogen levels dropped to 82
They can't remove the catheter until it reaches 100
They are going to redraw at 2p.
The LORD created every cell in my body and so he can make my fibrinogen levels 100. We are pleading with the LORD to please get those levels elevated.
The new attending doc just came in the room. Please pray for our day with him as he approached us as if we were brand new and showed little to no understanding of our month here. His recommendations clearly showed he had not read my chart.
Lord, we need a miracle!! Please show us YOUR plan. May we continue to bring YOU glory amidst this trial and the encounters we have throughout the day.
but the Lord establishes their steps.
Proverbs 16:9
Well, we had our plans in place.
My fibrinogen levels would be over 100 yesterday
They would remove the catheter
We would stay over night for observation with the EEG
They would send us home today and we could surprise Miss P
INSTEAD:
My fibrinogen levels were 85
They didn't remove the catheter
So, the new plans:
We would stay last night for observation with the EEG
They would draw my fibrinogen levels this morning and they would be over 100
They would remove the catheter
They would remove the EEG leads
They would send us home today and we could surprise Miss P
INSTEAD:
We stayed overnight for observation with the EEG
My BP got super low: 80/43
My fibrinogen levels dropped to 82
They can't remove the catheter until it reaches 100
They are going to redraw at 2p.
The LORD created every cell in my body and so he can make my fibrinogen levels 100. We are pleading with the LORD to please get those levels elevated.
The new attending doc just came in the room. Please pray for our day with him as he approached us as if we were brand new and showed little to no understanding of our month here. His recommendations clearly showed he had not read my chart.
Lord, we need a miracle!! Please show us YOUR plan. May we continue to bring YOU glory amidst this trial and the encounters we have throughout the day.
Monday, September 23, 2013
Monday Wrap
Well, we made it through another day and most importantly, the last day of treatment. Praise the Lord, we have not had any seizures today at the time of this post. Princess is doing well and truly, quite a difference from when we came into the hospital a month ago. With PLEX being completed, all that remains is to monitor overnight, remove the Quinton catheter, and go home. Thereafter, we will see how this week progresses and report back to our Neurologist and then follow up with the Neuro weekly. Again, the goal is no seizures and to evaluate if we'll have to do Chemotherapy in the future or more PLEX procedures.
As far as the Quinton catheter removal....Unfortunately, the labs that were drawn at 4:00 PM did not have the number we needed for the fibrinogen levels; therefore, it would not be safe to remove the central line. Additionally, the doc did elect to put the EEG back on to monitor overnight to see if there was any difference in activity since we began the PLEX procedures. Thus, the gameplan for tomorrow will to recheck the fibrinogen levels sometime around 6 AM. Assuming the levels are high enough, we'll have the Quinton removed, monitor for a few hours, remove the EEG, and head home!
Thank you ALL for your continued support along this journey. We cannot begin to tell you how awesome your prayers have been and how they have encouraged us along the way. Please pray for continued healing and restoration.
Enjoy the pics below. We couldn't resist one more shot of the catheter!
Surprise!!! Our lil' Critter came to the hospital today! She got to walk with Mommy and Daddy on the floor! We absolutely cannot wait to be home with her! It was so fun getting to be a family this afternoon. She even got to meet Mommy's doctor!
As far as the Quinton catheter removal....Unfortunately, the labs that were drawn at 4:00 PM did not have the number we needed for the fibrinogen levels; therefore, it would not be safe to remove the central line. Additionally, the doc did elect to put the EEG back on to monitor overnight to see if there was any difference in activity since we began the PLEX procedures. Thus, the gameplan for tomorrow will to recheck the fibrinogen levels sometime around 6 AM. Assuming the levels are high enough, we'll have the Quinton removed, monitor for a few hours, remove the EEG, and head home!
Thank you ALL for your continued support along this journey. We cannot begin to tell you how awesome your prayers have been and how they have encouraged us along the way. Please pray for continued healing and restoration.
Enjoy the pics below. We couldn't resist one more shot of the catheter!
Surprise!!! Our lil' Critter came to the hospital today! She got to walk with Mommy and Daddy on the floor! We absolutely cannot wait to be home with her! It was so fun getting to be a family this afternoon. She even got to meet Mommy's doctor!
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| In the window she loves!!! |
PLEX #7 and Prayers
Woo-Hoo!!! WE just finished PLEX Treatment #7! So, we are finished with treatments and now will be in a watch and see.....PRAYER mode. Lord willing, we will continue this trend of little to no seizures. NO SEIZURES is the prayer and that the PLEX will be a permanent treatment.
We had a good night for the most part and were surprised to find out this morning that Princess' fibrinogen levels were not quite as we expected. We had anticipated them being much higher than what was actually recorded. Hopefully, this won't be a setback for the timing in removing the Quinton catheter and going home.
As for the rest of the day, Princess will rest and recoup from today's procedure, the doctors will redraw her fibrinogen levels later this afternoon. If the fibrinogen levels are greater than or equal to 100, we'll remove the Quinton. Otherwise, it would be removed tomorrow and then we'll still need to allow a few hours of monitoring before going home.
Prayer Requests:
We had a good night for the most part and were surprised to find out this morning that Princess' fibrinogen levels were not quite as we expected. We had anticipated them being much higher than what was actually recorded. Hopefully, this won't be a setback for the timing in removing the Quinton catheter and going home.
As for the rest of the day, Princess will rest and recoup from today's procedure, the doctors will redraw her fibrinogen levels later this afternoon. If the fibrinogen levels are greater than or equal to 100, we'll remove the Quinton. Otherwise, it would be removed tomorrow and then we'll still need to allow a few hours of monitoring before going home.
Prayer Requests:
- Patience from the Doctors in the discharge process. We don't want them to be rushed in removing the Quinton and send Princess home too soon
- That Princess' fibrinogen levels at the check this afternoon would be 100 or greater
- Patience for us as we see getting home a reality. What a long month!
- NO MORE SEIZURES
Sunday, September 22, 2013
Getting Ready for Monday
Just a quick post as we prep for tomorrow, Monday, the one month anniversary of the start of all of this. We are so ready to be home. A month away from our girl and our home is tough.
Tomorrow is PLEX #7. As well, they will remove the catheter. Apparently, that procedure requires removing the stitches and then pulling the catheter out of my chest. Doesn't sound like fun.
Before the doc sends us home, he wants to observe me to see how I handle both procedures. So, Tuesday is the expected departure date.
Prayers:
Thank you all so much for being such faithful prayer warriors!
Tomorrow is PLEX #7. As well, they will remove the catheter. Apparently, that procedure requires removing the stitches and then pulling the catheter out of my chest. Doesn't sound like fun.
Before the doc sends us home, he wants to observe me to see how I handle both procedures. So, Tuesday is the expected departure date.
Prayers:
- Miss P will handle the time and distance well. It seems to be effecting her more and it breaks my heart.
- That tomorrow & Tuesday will be indicative of my response once we get back home since we tend to have a few good days in the hospital and so they send me home and then I have an increase in seizures and have to come back. Pray that if the seizures are going to increase, the docs would see it. If they are gone, they will be gone!!
- That the catheter removal will be a smooth process and my blood will clot properly.
- Continued financial provision
- Clear communication with and understanding from all docs and staff involved
- That my doc will choose Jesus as his Savior!!!
Thank you all so much for being such faithful prayer warriors!
Saturday, September 21, 2013
Saturday
Today was a fun day!!! We got to see our girl!!!!
We realized today how much hair I've lost through all of this. So, I may be getting a hair cut once we get home to clean up the mess that was left after almost three weeks of EEG leads attached to my head. As well, since I'm considered a "fall risk" I get to wear the incredibly attractive yellow gown. So, please pardon how frightening I look...keep your eyes on the precious little visitor we had today!
"Mommy, let's go look at the window!" This is a window that looks out over the construction of the new Parkland. She loves this window.
We miss our girl so much! We can't wait to get home. I know my Mom is ready for a break, as well. She is sacrificing so much to make sure our girl is taken care of and to make sure that we have had food and clean clothes for the last four weeks.
Only had one seizure today. We are seeing some improvement in my heart rate while I'm sitting down. It still elevates upon standing, but it's actually made it below 80bpm while laying down! Praise the Lord!!
We realized today how much hair I've lost through all of this. So, I may be getting a hair cut once we get home to clean up the mess that was left after almost three weeks of EEG leads attached to my head. As well, since I'm considered a "fall risk" I get to wear the incredibly attractive yellow gown. So, please pardon how frightening I look...keep your eyes on the precious little visitor we had today!
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| Walking the hospital halls with Mommy! |
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| Hangin' with Daddy!! |
Then, she got a hold of Mommy's camera & started having fun!!
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| Miss P & I both love this smile!!! |
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| Gamma pic!! |
Some of our friends from church stopped by to visit!!
Pardon the socks.
These are the non-slip socks they give you in the hospital and she really wanted to wear them as she walked around the room!
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| Sweet snuggles! |
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| Play time with Daddy is the best!! |
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| Our sweet friends! |
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| Goodbye hugs for Daddy!! |
Only had one seizure today. We are seeing some improvement in my heart rate while I'm sitting down. It still elevates upon standing, but it's actually made it below 80bpm while laying down! Praise the Lord!!
From B's grandparents
A king who did not believe in the goodness of God, had a slave who, in all circumstances would always say “my king, do not be discouraged, because everything God does is perfect. He makes no mistakes!”
One day they went hunting and along the way a wild animal attacked the king. His slave managed to kill the animal, but could not prevent his majesty from losing a finger.
Furious and without showing his gratitude for being saved, the nobleman asked
One day they went hunting and along the way a wild animal attacked the king. His slave managed to kill the animal, but could not prevent his majesty from losing a finger.
Furious and without showing his gratitude for being saved, the nobleman asked
"Is God good? If He was good, I would not have been attacked and lost my finger."
The slave replied: "My king, despite all these things, I can only tell you that God is good, and he knows why these things happened. What God does is perfect. He is never wrong!"
Outraged by the response, the king ordered the arrest of his slave. Later, the King left for another hunt, this time alone. He was captured by savages who engaged in human sacrifices.
On the altar and ready to sacrifice the nobleman, the savages discovered that their victim did not have one of his fingers. According to them, only a whole person with all his/her parts intact could be offered to the gods. The King without a finger was deemed an abominable sacrifice for their gods. So they released the King. Upon his return to the palace, the King authorized the release of his slave. He received the slave affectionately.
God was really good to me! I was almost killed by the wild men, but for lack of a single finger, I was let go! But I have a question: if God is so good, why did he allow me to put you in jail?"
The slave answered, "My King, if I had gone with you on this hunt, I would have been sacrificed instead because I have no missing finger. Remember everything God does is perfect. He is never wrong. He made you keep me in jail so I would not be with you on the hunt."
Often we complain about life, and negative things that happen to us, forgetting that nothing is random and that everything has a purpose.
Every morning, offer your day to God, don't be in a rush. "Ask God to inspire your thoughts, guide your actions, and ease your feelings. And do not be afraid. God is never wrong!
The slave replied: "My king, despite all these things, I can only tell you that God is good, and he knows why these things happened. What God does is perfect. He is never wrong!"
Outraged by the response, the king ordered the arrest of his slave. Later, the King left for another hunt, this time alone. He was captured by savages who engaged in human sacrifices.
On the altar and ready to sacrifice the nobleman, the savages discovered that their victim did not have one of his fingers. According to them, only a whole person with all his/her parts intact could be offered to the gods. The King without a finger was deemed an abominable sacrifice for their gods. So they released the King. Upon his return to the palace, the King authorized the release of his slave. He received the slave affectionately.
God was really good to me! I was almost killed by the wild men, but for lack of a single finger, I was let go! But I have a question: if God is so good, why did he allow me to put you in jail?"
The slave answered, "My King, if I had gone with you on this hunt, I would have been sacrificed instead because I have no missing finger. Remember everything God does is perfect. He is never wrong. He made you keep me in jail so I would not be with you on the hunt."
Often we complain about life, and negative things that happen to us, forgetting that nothing is random and that everything has a purpose.
Every morning, offer your day to God, don't be in a rush. "Ask God to inspire your thoughts, guide your actions, and ease your feelings. And do not be afraid. God is never wrong!
Friday, September 20, 2013
Friday Update/Weekly wrap up
Realized that we haven't posted any pics from PLEX #5. So, here is the fun machine that they wheel in each day that we have a treatment. Crazy, huh? The nurse refers to it as R2D2!
It removes my blood, puts it in a centrifuge, pulls out the plasma (the big bag hanging in the back), and then puts my blood back in with some saline and albumin (the upside down bottles).
Well, as B finished his post last night about the amazing prayers that have surrounded us through this time, we had even more come pouring forth. He received a text message late last night from some friends that said they felt called to come up and pray over us. So precious. They made a late night trip up here and we spent some amazing time in prayer. They also brought a friend that felt called to pray for us, as well.
I wish I could explain how precious the time was, but I'm at a loss for words. God has clearly revealed HIMself throughout this journey. Please continue to be in prayer for my doc and his heart! We truly pray that he comes to know the Lord, the one and only Lord, that has carried us through this journey.
...one Lord, one faith, one baptism; one God and Father of all, who is over all and through all and in all.
Ephesians 4:5-6
One of our precious friends has continued to send us the prayers from her children:
"Please heal M tomorrow, or today Lord, or you could the next day."
then, after praying for me he has been saying...
As you know, there was much miscommunication yesterday. However, things seemed to flow pretty smoothly today. Thank you, Lord! This is Ms J. She's the Nurse that has done my PLEX all week. She's been great.
The treatment went well today and I've been blessed with over 75 hours seizure free. We got to have a nice discussion with the PA in charge of PLEX and decided to wait until Monday to do the next treatment so that my body has a little bit more time to heal from today's treatment and produce enough fibrinogen to allow them to remove the catheter sooner.
So, the reality of home is getting closer. We are tired and; more importantly, miss our little girl. While we won't be doing treatment this weekend, please pray that the weekend itself would pass quickly. Four weeks is a long time! Lord willing, no more. Thanks to all of you for your continued faithful support and prayers!
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| This is what it looks like when they are finished. The prayer is that bag is full of all the antibodies and that they never come back... |
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| Little Miss P got to come visit on Wednesday after PLEX. So, we all had smiles on our faces. |
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| This is Miss P using my central line like a straw!! I wish you could hear her sweet little slurp! |
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| Hangin' with my girl! Oh, how I miss her. |
Well, as B finished his post last night about the amazing prayers that have surrounded us through this time, we had even more come pouring forth. He received a text message late last night from some friends that said they felt called to come up and pray over us. So precious. They made a late night trip up here and we spent some amazing time in prayer. They also brought a friend that felt called to pray for us, as well.
I wish I could explain how precious the time was, but I'm at a loss for words. God has clearly revealed HIMself throughout this journey. Please continue to be in prayer for my doc and his heart! We truly pray that he comes to know the Lord, the one and only Lord, that has carried us through this journey.
...one Lord, one faith, one baptism; one God and Father of all, who is over all and through all and in all.
Ephesians 4:5-6
One of our precious friends has continued to send us the prayers from her children:
"Please heal M tomorrow, or today Lord, or you could the next day."
then, after praying for me he has been saying...
"Lord please be with P. Help her never to get the seizures. Amen."
As you know, there was much miscommunication yesterday. However, things seemed to flow pretty smoothly today. Thank you, Lord! This is Ms J. She's the Nurse that has done my PLEX all week. She's been great.
B took some pics of the catheter tonight as the nurse was changing the dressing.
We continue to trust in the Lord for HIS perfect healing! We believe He can do it.
This is the view out our window!! It's an amazing reminder to pray for what each of those families is enduring as we spent time there a few years ago, as well.
Beggin for prayers for our sweet girl
2/05/2011 update
Sunday Update
Yesterday, Today, Tomorrow
Beggin for prayers for our sweet girl
2/05/2011 update
Sunday Update
Yesterday, Today, Tomorrow
So, the reality of home is getting closer. We are tired and; more importantly, miss our little girl. While we won't be doing treatment this weekend, please pray that the weekend itself would pass quickly. Four weeks is a long time! Lord willing, no more. Thanks to all of you for your continued faithful support and prayers!
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