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Monday, September 24, 2007 |
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Just wanted to post an email that Maggies mom sent to the list today.
"Maggie got her central line removed today, along with the last of her morphine. So that means there are no more tubes or wires hooked up to our girl! We were getting hopeful that she could be d ischarged as soon as tomorrow but then she had some rough times with drug withdrawal this afternoon, so its more likely Wed than tomorrow. But we can feel how close we are to bringing Maggie home! At this point, the only evidence that Maggie has been in hospital is the bald spot on the back of her head. I was heartbroken to discover this today along with two big rat's nests of knotted hair that will have to be cut out. Maggie might need a short hair 'do for a bit and it will be hard for me to cut her lovely curls. But if that's the only lasting sign of how sick she was, then we can swallow our vanity about Mag's bright hair and chop away.
Maggie is generally cheerful and engaging these days. She's tired and low energy. She is almost completely weaned off the hospital medications. She can sit briefly without support. I was able to put her in her wheelchair today and spin her around her room and I gave her a sponge bath while she sat in her wheelchair, and she had the stamina for all that. She seems a long way from walking again, but I think once we get her home, she'll be getting around in no time! Mostly, Maggie is just bored by the hospital. She's as exhausted by it all as we are. All the hospital staff wear yellow gowns and masks and gloves when they come into her room, and she has taken to crying as soon as anyone walks in wearing yellow. The poor kid is just so tired of being poked and prodded..
Mag had an upper GI study this morning, where she swallowed some barium, and then other barium was inserted into her g-tube into her stomach, and multiple images were taken by x-ray to see if she swallows safely and if she has reflux. Her swallowing was good and there was no sign of reflux. This doesn't rule out reflux as a cause of her pneumonias, since a GI study is like an EEG, it only captures an event that happens while the machine is monitoring, but it seemed to indicate that Maggie's digestive system is fairly healthy. In some ways, reflux is one of the most straightforward explanations for her illnesses, and one of the most straightforward to fix, so it was almost discouraging that it all looked good. Once Maggie is stronger, she'll have an endoscopy where they actually run a camera into her esophagus and look all the way down to her stomach to see if there is evidence of damage from reflux. But right now, they don't think Maggie is up for another invasive procedure, and we agree. They want to wait until she's been home and regained her strength before sedating her again.
Part of why Maggie got such awesome care is our hospital is a big teaching hospital, so the doctors are current on all the latest research. The flipside is that there is never just one doctor. There is always the attending, the residents and often some interns. (I only have the show Grey's Anatomy to thank for teaching me the doctor hierarchy.) There is not just a nurse, there is usually a nursing student or two. That means that everytime she gets her vitals taken, the student does it first, then the supervisor does it again. This is tedious at the best of times and Maggie's patience for it is wearing thin. We actually kind of enjoyed the rounds in the ICU, and educating teams of medical students about Angelman. But at this point, we're just ready for home! After watching nursing students struggle painfully to figure out Maggie's feeding pump today, I started just running all the feeds myself and getting them finished and flushed before the students got back, just to spare Maggie any more people in her room than she had to.
A resident supervised an intern removing Maggie's central line today. The central line was an IV running into an artery in her thigh with multiple ports. (At one point, Maggie had 8 separate IV lines!) It had a flexible tube that was inserted several inches into her thigh, and was held in place by two sutures. The whole scene was straight out of Grey's Anatomy. The interns and resident were a bit disorganized and disagreeing on exactly how to do it. The intern's hand was shaking as he went to cut the sutures. If Maggie wasn't so upset by the whole scene, it would have been kind of funny.
A box arrived today from Sue and Anna in St Louis. There was a fleece blanket and a toy. I took the toy to Maggie, but Ella is not giving up the blanket. I wished for a camera while Ella was tackling this blanket. She lay on it, rolled herself in it, and dragged it all over the house. Sue, that blanket was the sweetest thing and a huge hit. Ella is snuggled up to it right now, sleeping in her crib. Thank you, all of you, for all these gestures of support and caring. It has meant so much to us and made this whole experience easier.
Hopefully my next post will be about Maggie's homecoming!"
Alec is also doing very well,no seizures all weekend or all day today!!! So way to go Alec and Maggie,were so proud of you both!!!
Now for Mr. Brady,he started having drop seizures last night. He must have had 10 or more,and has blue spots on his face from falling,heck of a time to learn to walk! He is doing ok today though,no seizures so far. He had his med levels and ammonia levels checked,but dont have the results back yet. He done pretty well being stuck,but man is he strong. But hes doing well,hes still walking all over the place,but I can tell that hes not feeling as good as he could be,hes been a little less stable with his walking. Anyway I will update everyone when his tests come back. |
posted by angelwings
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8:41 PM
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