Sorry for the lack of posts lately folks.
We are getting really fed up with this whole process. I've been challenging the doctors quite a bit lately as they are making certain decisions. And we had lots of moments where we thought we might be going home sometime this week. As is stands now, we are going home on Monday.
Clara has thrown up about 10 times today. We are pretty sure her NG was in the wrong place as she wasn't throwing up any food - just watery, bile-like stuff with a few strands or flakes of brown. I was pretty sure she had an NJ again (the tube ending up in her intestines instead of her stomach). She has been tolerating her feeds really well (meaning we have been bumping up the rate of food she gets per hour), but the lack of breastmilk or formula in her vomits concerned me that the tube was ending in the wrong place and irritating her stomach. We got a chest x-ray to confirm placement and, while it wasn't completely obvious, we pulled the tube back by 5cm. She perked up quite a bit after that and was smiling, babbling, and "walking."
Alan and I are now switching who is at the hospital every night. We started out doing 3 night (that only lasted one set), then have been doing every 2 nights. But, it has gotten really really difficult to do this anymore. I do not do very well in an environment where I am not in control...of everything. I need to be kept up to speed on decisions and the thought process that went into making those decisions. Often, I like to be the one making the decisions or at least have had my opinion heavily considered during a decision making moment. Lately, everyone has been telling me I am going to fast, need to slow down, blah blah blah when it comes to Clara's feedings. But goodness gracious, I'm the one in the room with her and know if I feed her too much. I am indeed pushing to see how much she can take. I am indeed feeding her faster than they might normally go. I am indeed in a hurry to get her digesting the full amount of her daily calories via NG so we can go off the IV form of food. HOWEVER, I am also her mother. I don't want her to throw up. If I thought the rate at which I was feeding her was too high, I'd back off. In fact, for months they have been the ones pushing me to give her more and I knew she couldn't handle it.
Bah!
Can you hear the frustration? Can you hear the irritability? It doesn't go away. We are so tired of this whole thing, it is really really hard to be nice. It is hard to hear them say, "She looks great!" when I know she is feeling bloated and they don't want to give her lasiks. It is hard to know this is almost over. BUT, when we get home, we still have to adjust to the new outpatient chaos and schedule. Because, it isn't really over.
Tomorrow, Clara is having an MRI and CT at 2:30pm. We will be looking to see if the antifungals have officially killed back the aspergillus. If there is still nothing in her brain and lungs, and if they can't see anymore on her kidney, then we will be continuing the antifungal treatments through at least day 30 (next Friday). If we don't have to do those IV meds anymore than things will become very much easier a lot more quickly. It will just be teaching Clara to eat. Managing a few oral meds. And clinic appointments on Mondays and Thursdays. I can handle that.
So, again sorry for the lack of updates. We aren't the most chipper of people lately and the goings on have been mostly details medical stuff that is kinda boring or takes a while to describe/explain.
A few fun things are that Clara is waving hello to herself in the little vanity mirror over the sink in our room. She will crane her neck to try to see into the mirror if we are close to it but not in view. As soon as she sees herself, she grins. And when I say, "Hi!" she starts pumping that right arm up and down with a fisted hand. She is also getting more adventurous and will reach for things well out of reach and end up having to do some crawling type motions. She is getting really strong and enjoying standing while holding on to my hand with one hand although usually two. She is also getting better at walking. I have my hands under her armpits and lift just the tiniest bit and she will pick that foot up right away and place it in front of her. She gets a kick out of moving forward.
That's all for now. Will try to keep you updated as we make the official transition to home life!
2 comments:
Brooke, we've met just a couple of times at parties in Fearrington, so I don't know you all that well - but I do know that any parent would be incredibly overwhelmed at what you've been through/are going through, and that you have every right to be irritable, exhausted, fired up, etc.! THIS IS YOUR CHILD! I'm sure none of us who care about your family feels judgmental about how you're feeling or acting. Especially because all we can do is pray and send encouragement to you all. And we'll continue to do that - while you and Alan continue to work like gangbusters to make sure Clara recovers. Hang in there!
HANG ON!!! I know it must feel like eternity right now until you can begin to put this nightmare behind you, but I do believe it is right around the corner. Scream, throw tantrums, do whatever you need to to release the tension. EVERYBODY would understand...even if we can't ever possibly understand just what you feel. YOU ARE AMAZING as is Clara! I am so very proud of you all!
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