Alexa is up to her old tricks again...baffling all her doctors. We had such a busy week last week, I think maybe I just wore poor Alexa out. On Thursday it was stifling hot, and the air was thick enough to cut. I had a dificult time breathing nevermind already having issues. We had a play date with Hunter and Heidi and went to a few museums for the older kids. A very neat dinosaur museum, and then to the Eric Carle museum. It was a great afternoon and we were able to stay cool in the AC, but Alexa did not nap. She usually takes about 3 naps a day, and needs them to function. She aspirated twice on her thickened water. Once earlier in the day and then again before bed, I probably shouldnt have given her water back to her later, but it was soo hot, and she kept signing thirsty. Anyway she was very gurgly before bed, and we did cough assist and suction which seemed to clear things up. We put her to bed and shortly after she started having apnea spells. Her apnea spells are funny because they get progressively worse the more she has requiring more and more stimulation. That night in about a 2.5 hr timespan she had about 40 episodes, the last few times needing to be vigerously stimulated, and turning blue. VERY scary.
I had to call 911 and while I was on the phone with them she had about 5 episodes. Kev had left for work by this time and we only have one car so we needed to ride in the ambulance (Kaylie was thrilled). There must not be much going on in our small town because all of a sudden there was a cop car driving down the street with a big spotlight pointing at all the houses. Way to alert the neighbors... Anyway I had gotten Alexa up and she was completely alert at this point. We went to the local hospital, can we just say that it is the tiniest hospital around, and probably one of the worst. They had no clue what to do with Alexa so we were shipped off to Childrens hospital Boston yet again. Alexa was not pleased with these circumstances to say the least. While in the ER it was freezing and Kaylie and I had blankets wrapped around us. Alexa was in a onesie and shivering with just her green blanket, but she absolutely refused to let the offending white hospital blanket touch her.
Turns out Alexa had a high fever, but because I medicate her so frequently for pain I dont know how long she had it. They did chest xrays, and it was slightly off but because there is a lag in xrays and her known aspiration they assumed it was aspiration pneumonia, and were treating it as such. Poor baby had to be admitted to the ICP which is a step down unit from the ICU. Basically just closer monitoring more nurses less patients... They of course needed an IV and tried 8 different times before they gave up! How traumatizing for my sweet baby.
By this point Alexa was terrified of every person who came near, and decided to become invisible. She believes that if she cant see you then you cant see her. She drapes her green blanket over her entire body and feels safe. Its cute because you see this green blob in the middle of her crib, and once in a while you'll see this eye peeking out. If anyone else is in the room she quickly goes back to her hiding spot.
They looked in her ears and couldnt see what they wanted because she had soooo much waxy buildup. They gave her ear drops to soften things and then cleaned them out. What an awful procedure, I literally had her in a headlock with her legs pinned between mine. I'm supposed to be protecting her and here I was holding her down and letting those villians (the doctors) torture her. I felt awful. She did have a slight ear infection, and the docs decided to treat it aggressively before it could get worse. Also we met with a nutritionist and they changed her feed from the infant formula to the junior/toddler formula. This has higher calories and other nutrients that she wasnt getting before, and it means that she can have two extra hours off her feed. YAY! more freedom.
The doctors want to understand why her apnea appears to be getting worse lately. We believe we're just seeing a progression of her disease. She's been much weaker lately and has been stumbling around a lot more. Also they noticed that she sweats so much. The rooms are very cool, but yet Alexa is sleeping in a puddle of sweat. So they are starting to think she might have some sort of autoimmune disorder. She has other symptoms that point to this diagnosis as well. Great... just what we need another diagnosis. We'll be meeting with a specialist soon about it.
They gave us the option today to either go home or stay another night which would inevitably be more to complete a sleep study and have a consult with the autoimmune specialist. They would have preferred we stay, but I weighed the harm it might cause her against the possibility of maybe finding something new out, and decided enough was enough. We can visit the specialist outpatient, and run whatever work up he wants out patient. I just cant see traumatizing Alexa anymore than she needs to be. I can just see the specialist wanting to run all sorts of tests while shes "inpatient" and being stuck there for a couple of weeks.
I do have to say that even though I hate being in the hospital with her this stay wasnt as bad as some of the others. We had our own room, privacy, an awesome view, I got some visits from some great friends... One of which hosted my family so Kevin and Kaylie could be close by, which made the stay so much more tolerable than being all isolated in the hospital room unable to leave the floor, and it was AC so while everyone else was sweating it out, we were nice and cool. I've been trying to put a positive spin on things how am I doing? The doctors believe and so do Kevin and I that Alexa would benefit from an AC in her room. So we are hoping to get one soon. This week we have a ton of follow up appts, but we will try to take it a little more easier when we can.
Sorry about the lack of pictures I havent been able to find my camera charger anywhere. :(
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