So, we did fine with the fevers at home on Thursday. It would hover around 101-102, but we were able to bring it down with tylenol and motrin then the fever would come back. Very early yesterday morning, her temp spiked to 103 and she had some increased seizure activity. I gave her some diastat (basically valium) and motrin. The seizure stopped and her temp started coming down again. A couple of hours later the fever was back so we decided to go on to the hospital before things started getting out of control.
In Zeta-like fashion things seemed reasonably well when we first got to the ER, but immediately began to change. She began having more seizures and her temp was up to 104. Her blood pressure started dropping and she just looked bad.....so bad that when everyone came running in to help her I could only keep saying, "She looks like she did when she went into septic shock....." The folks in the ER were super! They took such good care of her. A course of 'normal saline boluses' were started. 1 then 2 ....I think she ended up with a total of 4 or 5. She has a couple of antibiotics going now. Finally, things seemed to calming down so they felt good enough to go ahead and transport her to the PICU...but low and behold...her heartrate began dropping dangerously low as they got her out in the hall. Someone called for a dr and once she assessed her we turned right back around. They spent several minutes trying to figure out what was going on....Her heartrate would drop and immediately go back up. Then it would go to 0 and immediately go back up. I explained that she had started doing this in the past few months and I thought it was yet another strange neurological thing she was doing...the last time it happened was actually when she was hospitalized in May. Her cadiology appointment (that we had to cancel) on Thursday was actually in regards to this very thing....I don't know what causes it....she has had several echocardiograms and ekgs....and everything always checks out pretty normal...To put your mind at ease we haven't had anymore of those spells since they've moved her to the PICU.
When we got to the unit things seemed to have settled down a bit, but shortly after her heartrate began to climb and stayed around 200 for a very long time and she was burning up. Her temperature had spiked again...over 105 this time. We started covering her in wet rags as she could not have any more tylenol at the time. They started infusing more stuff in her ivs. She started looking more and more swollen and started 'the blue spells' again....Finally, around 9 her temp started coming back down. She has been lethargic, but agitated. We've finally been able to keep the temps back around 100-102 today, and she seems a bit more comfortable. She has been sleeping most of the morning. They're probably going to put a central line in later today....I'm thinking this is the sickest she has been since Feb./March although she has has at least 3 admissions since then.....I'm PRAYING that this is NOT a repeat of last July.....
Guess what the initial results are showing?,......UTI........in the words of Sarah Palin, "UNFLIPPINBELIEVABLE"....we just had the test done that showed her kidneys were being protected (due to the procedure she had done in Jan.) But the docs here say that with the initial UA and how sick she is it is all pointing to a kidney infection......they've been very concerned about sepsis too, but her blood pressures are back up this morning, so that is reassuring.....I cannot even comprehend that this could be a kidney infection....so..if it is something else I hope they can find it......If it is all some weird neurological process I hope we can get the brain lesion removed soon!!!
We need prayers, but we aren't the only ones that need it. There's a floor full of sick kids here that need prayers. There's a man at University Hospital in Augusta that has a wife and a little girl fighting hard that needs your prayers too. The world is full of people that need prayer. We all do, but I know that there are miracles everyday. I pray for the miracle of healing and peace for my baby.
Exodus 14:14 "The LORD will fight for you; you need only to be still.”
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