Wow…have I really not posted since we’ve been home?? I am sooooo sorry!!! We
So, here are some of the highlights of the stay…
Several factors made our stay extra long…and though I’d love to say that it was all because the doctors and nurses loved Hannah so much that they didn’t want her to leave, that wasn’t the case. The cath I mentioned in the previous post didn’t happen for another week and a half. Originally, a resident messed up and told Hannah she could eat when she wasn’t supposed to, then she tested positive for RSV, so it got delayed until the following Thursday. ARGH!
Hannah never developed any of the signs of RSV, so after a long weekend in isolation, she was cleared from that. The problem was that she started to slip into a depression while she was isolated. She was screaming non-stop at anyone that entered the room, including Craig and I. She had so much pent up aggression that she didn’t know how to deal with. Slowly, after a lot of hours and tears, she started the open up a bit.
Another hold up was that she continued her hunger strike. She refused food and liquid for more than a week. The doctors told us that it is the only control toddlers have on things, so many make the most of it. Hannah just took it to an extreme. We finally caved in and for the sake of her health, we had them put in a feeding tube. That didn’t come out until a few days before we came home, and there was even talk about sending us home with it.
Finally, Hannah did have her cath done. Her O2 levels remained low, and they wanted to see what the cause was. There was talk about closing the fenestration, putting in a permanent pacemaker, and other possible measures. In the end, it was decided that her ventricle is stiff and needs time to relax itself. So, no pacemaker and no closing of the fenestration.
So, that’s the stay in a nutshell…now here’s the stuff that’s been happening since we’ve been home…
Hannah continued her depression even once she was home. There were many contributing factors in my opinion…she was mad that she had an operation, she didn’t understand why she needed the operation, she was in pain, she wasn’t in control, she was scared, and as if she needed one more reason, I had to give her shots twice a day for a week and a half. The shots were anti-coagulation medicine. She is now on Coumadin, but it takes a week or more to get the levels correct in the system. The Enoxaparin shots she was getting were immediate and they kept her levels up until the other meds kicked in.
Finally, she has decided that she doesn’t need to eat 3 meals a day on the couch, we aren’t the enemy, and she didn’t do anything wrong to deserve this. We are slowly getting our little girl back.
I’ll post some photos when I get a chance. Again, I am so sorry that it has taken me this long to post an update.
Cheers!
Sharon
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