Well, the shit show that has been our lives since February continues. Another hospital stay. I’m so tired I can’t even think straight any more. I’m tired of the four walls of this hospital, I’m tired of shitty cafeteria food, I’m tired of our lives being in total turmoil, I’m tired of listening to my child cry, and I’m tired of not getting any answers. I’m not sure I even know what our “normal” lives were like any more. Addi has landed herself in the PICU again – I’m pretty sure it’s her favorite place; it’s starting to feel like our home away from home and we know far too many people here. Which is nice, but getting to know the ICU staff is not really a life goal that you want to strive for.
Addison had her adenoids removed on Friday April 28th. She did great the day of surgery and for a couple of days after. By Sunday night she was crying a lot and acting like she was in pain. She was difficult to get to sleep and she was only comfortable if she was being held. We figured it was just pain from the surgery and she just needed a few days to feel better and for all the inflammation to decrease. Monday through Wednesday were much the same – lots of crying/screaming and difficulty getting her to sleep or settle if she wasn’t being held. Thursday she slept literally all day and only really woke up in time to be fussy around bedtime. Friday I got her to take a short nap in her crib, but she woke up screaming. By the time Saturday rolled around, she was screaming and writhing in pain and was inconsolable. So we brought her to the ER. They found that she had an elevated white blood cell count, but they couldn’t figure out where the infection was – her urine was negative, neck CT was negative, chest x-ray was fine. They gave her morpine, which did nothing and versed, which worked long enough to keep her still for the CT. She had to be put on a little oxygen because all the crying was affecting her breathing and making her sats low. By the time they were finally ready to send us up to the floor, they had pretty much ignored her for a few hours, during which she had been screaming her head off because nothing I did made any difference. By the time we got up to the floor, her breathing was crap (she was retracting and working really hard), her sats were even lower and she needed more oxygen and she was still inconsolable and hysterical. They quickly called the ICU down to come evaluate her and we ended up in PICU within 30 minutes of our arrival on the regular floor. In PICU they could better medicate her and because the crying/screaming was affecting her breathing so much, she ended up on the vapotherm anyways. Basically, they have been sedating her to keep her comfortable while we try to figure out what is going on. She has as needed pain medication and IV drips of two different sedation medications. Thus far, we have not been able to figure out what is causing her pain.
To say that we are extremely frustrated does not even begin to cover it. It’s horrible to watch your child be in so much pain and to not be able to comfort her at all. It’s torture. We have done so many tests, but nothing has been the answer. It has been an incredibly frustrating, exhausting, emotional experience. I just want to find a reason why so we can fix it and get our calm, happy girl back.
We know a crap ton of things that this is not. It is not:
- Reflux, EGD was normal, plus she’s been on two reflux medications for over a month now
- Seizures, EEG was not changed
- Even though her hips are dislocated, ortho says they are not causing this level of discomfort
- Intestinal obstruction or twisting or constipation
- Kidney stones
- Any random fractures in her lower extremities
- Increased fluid/pressure in her brain
- An abscess or infection in her neck from her adenoidectomy
- Low vitamin B12 level
There are two main theories we are working with now. The first is keppra rage. Apparently keppra can make you angry/irritable. This is treated with vitamin B6, so they started that a couple days ago. To me, she acts more like she is in pain, but I guess we will try it for a few days and see what happens. There is no information out there on how long people are on keppra when this “rage” starts. I asked the doctor to look into it and she was unable to find anything. When I attempted to google it, all I could find were a bunch of forums of people who are/had been on keppra discussing it, but nothing scientific. I need scientific. The second working theory is that with the damage she had to the white matter of her brain (way back in her NICU days), she could have trouble processing sensory input – everything is just too much for her to pay attention to/sort through so she is basically overwhelmed by it. There is talk of doing an MRI to see if there have been any changes since her last one, which was a year and a half ago. However, that doesn’t really change the treatment plan, so we are holding off for now. Finally, the only part of her body that hasn’t been x-rayed or imaged at all is her arms, so I asked about getting x-rays of her upper extremities just to be sure there is nothing going on there. We have been in the PICU for a week and it feels like we are no closer to the answer. She is still on the vapotherm because when she gets worked up, her breathing becomes a problem; we have been able to wean her flow a little over the past couple of days and she has been on room air for the past couple of days as well. At this point, I just want to find the cause so we can figure out how to treat it and get back to our normal. It’s crazy when you start hoping something is going to come back abnormal. She’s been miserable for so long, I would love to see her happy, content, and smiling again. As always, thanks for all your thoughts, prayers, and kind words. If you have taken the time to text or message Ryan or I, know that it is greatly appreciated.