Wow! Our day was crazy. Started with our trip to Scottish Rite with Miss P. They first needed lab work. Last time was easy and she didn't even flinch. This time she screamed like crazy and it took two sticks to finally get what they needed.
She seemed to realize where she was and she did not want to sit still in a room. So, she and I walked the halls together and let Daddy come tell us when we needed to be in the room. We were in the hallway, and saw a gentleman that looked so familiar, but he didn't say anything and so I thought I must be wrong. Then, I heard him say his wife's name and our city to the gentleman he was speaking to and got excited that we had a friend there. Turns out he is the "man in charge" over the entire area that P is being treated! He used to teach our Sunday School. So fun!
Since it is a teaching hospital, you might not get the same doc each time and they send in the resident before the doc. We asked the nurse how a different doc would know if there was substantial improvement or not since no pics were taken at the previous visit. She said they have #s they apply to it and that would help. We still beg for our original doc, though. The resident came in and he was very kind, but many of the concerns that we had just stated to the nurse were starting to be proven true. He asked us what it looked like before and if there was any improvement! Grrrr! He then left by telling us that they might stick with the meds she was on, but it was time to add the chemotherapy. He said he would go get the doc on call and let her know.
P and Mommy walked the halls for a little bit while Mommy cried and prayed with Miss P. Daddy called us back in that the doc was ready to see us. Praise the Lord, the doc that saw P today is the one that saw her last time and is considered to be the #1 doc in the nation for this condition!!! Thank you, Lord!! So, she did a full exam and said that she felt there was enough improvement to stick with the current course of treatment/no chemo (Mommy teared up and let out a, "Praise Jesus." at this point)!!
She said that P couldn't have picked a better spot to have Juvenile Arthritis if she was going to have it. Just about any other joint probably would require the chemo, but she felt the toes were okay to watch a little longer. We also found out that her's does not seem to be rheumatoid, but more Psoriatic. So, we go back for our next check in October!! The doc was also incredibly sweet this time and asked how my health was progressing!
So, after she left we started to notice that P felt a little warm. They brought the prescription for P's meds and we were about to leave. Then, the doc came in the room and said that P's urinalysis came back pretty indicative of a UTI and that we should contact her pediatrician. We got in the car and tried to feed P her lunch. She wanted nothing to do with it. She basically refused to eat it which isn't like her.
We have a sweet friend that we can't wait to tell you about, but things have been so crazy. Anyway, we needed to take our friend to a doc appt, as well. So, we went to her appt. P slept on the way and then came in the doc office and walked around for a while though she still felt a bit warm!
When we got back in the car, she wanted to finish all of her lunch. She also ate her afternoon snack and drink. So, we thought we were on the road to being better. She slept on the way home. We put her down for a nap as soon as we arrived.
She woke up screaming and was super hot. We made it to the doc's office in no time to find that sweet little Miss P had a fever of 105!! The doc's office immediately sprung into action with Motrin, cooling rags, flu & strep tests, etc. I pray that it never has to happen again, but despite having two seizures today, the Lord gave me the ability to be her Mommy! I got to hold my precious girl as she screamed and cried (no seizures). She also allowed me to sing to her and just hold her and comfort her! Wow!! What a gift to get to be her Mommy! Again, I pray this never ever happens, but I am so grateful that the Lord allowed me to be her Mommy today! Thank you, Jesus!
They kept trying to get a urine collection so that they could give her an antibiotic shot. However, she just would not share. So, once her fever had dropped to about 102 they allowed us to head home. Had she not responded to the meds, they were about to send us to Children's, but she did respond and so we are at home with our girl tonight.
We have to wake her up multiple times throughout the night, take temps (we don't have a good thermometer for a kiddo and so this should be fun), give her meds, etc. B has a full day at work tomorrow since he had to take all of today off for all of our appts. He has to cancel a few morning appts. to get us to the doc in the morning, but then has to get to his appointments. So, please pray that she is feeling well in the morning.
There are many of you that received requests to pray for her through B's work, etc. Thank you all for selflessly stopping to lift our girl up to our Savior. May she continue to heal and may HE be glorified!! Praise Jesus that our girl is feeling better!!!
4 days ago