It's about 5 in the morning here at Mass General. Janey is finally settling down after an ordeal I'll write about later, Tony and Freddy are sleeping and I am feeling rested after about 3 nice hours of sleep---not even being sarcastic there. So I thought I'd write more of Janey's appendix story.
When Janey came back to her room after her surgery, she was of course very sleepy. She also was having trouble keeping her oxygen up, so she was on an oxygen mask. If she took it off, which she did sometimes, even in her sleep, her levels of oxygen would go way down. If they got lower than 90, an alarm would sound. That was eventually changed to 85, as the alarm was going off so much she couldn't sleep. We got through that first night---Tony went home for a bit to sleep. I got maybe an hour's sleep, but I was hyped enough that it was okay. Our plan was for my friend Maryellen to pick me up in the morning and take me home for a while, probably until 4, so I could sleep at home and do a few vital house things.
I went home as planned, and didn't sleep right away, because I just couldn't. My mind was racing and I had to do something to rest it---so I watered all my plants and planted some new hostas I had ordered. I have found I always need a fairly obsessive hobby to keep me from going crazy. Right now it's gardening, and it felt good to just indulge myself a bit.
Then I went inside and called Tony, and found out all hell had broken loose at the hospital. Janey's fever had spiked to 105 under her arm, which is more like 106. Way too high, obviously. So they did an emergency chest and stomach x-ray, right in our room, to make sure there was not some big issue there. There wasn't, except for expected things, so they put her on IV Tylenol (which for some bizarre reason is the most expensive IV drug you can imagine, and which my sister tells me many hospitals won't use at all, and which they had to get special permission to use here, and the IV nurse had never even heard of it), which worked to bring down the fever.
Maryellen drove me straight back to the hospital after hearing what was going on. I am very grateful to her. Janey had calmed down some by then, and was happy to see her Except for some more fever spikes, not as bad ones, and some more struggles with her oxygen levels, the rest of that day was okay. Tony went home to sleep, and I tried to sleep, but that night her oxygen was constantly going below 85 and setting off the alarms. The nurses would come, but I would of course wake up and fix her mask. I didn't sleep except for an hour or so. I called Tony about 2 am and asked him to come back at 4, and when he did, I caught some sleep.
When I woke up, once again crisis had brewed, as her oxygen problems were concerning enough they did another x-ray, to see if she might need the ICU. It was about the same as the day before, so they didn't. My friend Christine came to help, and that was great---Janey was so happy to see her. I was too, as I slept a bit more! Then, again, crisis, as when Janey woke from a nap, her pain was so much it was overwhelming. She screamed in pain, and started gagging like she was going to throw up, and just looked like something very, very bad was happening. It was so scary. She was given some morphine and finally she calmed down and slept some. We had another episode like that when she woke again.
Because her oxygen was being such an issue, it was important for her to sit up and to walk. So even with all the pain, a few times we got her sitting in a chair and we once did a walk (with tons of help) to the Child Life room down the hall. She got worn out by that and we took the wheelchair back. The Child Life room was amazing. When Janey is better, I think she will love it.
Freddy came last night to help out in the night. We all three stayed here. But even with that, Janey constantly took off her oxygen mask, and when she did, the levels would drop to scary levels---as low as 77, which if you have a child with asthma, as I had two, you know is one very low level. A few hours ago, Janey got enough of her old spunk back that she was fighting the mask extremely hard---taking it off and tossing it, pushing it off constantly. The great nurses tried everything---using nasal canulas instead, trying different way to put on the mask, but it just wasn't working. Janey was getting dangerously little oxygen.
So, finally, we had to put her in restraints. That was hard to do. By the end of the about hour it took to get that done, the nurses had gotten an advanced degree in Janey Strength and Determination. She managed to get out of the restraints several times before we got them right, she turned her head quickly to try to bite a few times---one of the nurses said "You have a special kid there" He wasn't saying it in a bad way---just saying what is true. Janey is not easily kept from what she wants. Now, though, at last, she is getting the oxygen she needs to recover. One of the surgeons came in to tell us how sorry he was they had to use the restraints. I told him, and meant it, that we know they did everything they could to avoid it. Janey's recovery comes before anything, right now.
And here we are, for the foreseeable future. We will not being going home very soon. She can't eat yet, she can't walk without support, she can't breathe without oxygen help. She is in a lot of pain and still spiking a lot of fevers. This is going to be a long haul.
Janey's autism is affecting every part of this medical journey. It made it hard to diagnose what was wrong, and it is making it challenging to treat her. I am so pleased still with the care we are receiving. Mass General will be Janey's hospital for life, I am pretty sure.
We are tired, we are still in shock but we are grateful, to still have our Janey, to have all the great care here and so very much, for our friends around the world that care about Janey and support us so much.