Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged IV

Movin’ on up

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Leeza was allowed to sit up today and put pressure on her back and so far, so good! She’s totally off pain meds and seems to be doing fine and is getting back to her usual ornery self. :) She has had some trouble keeping food down and we’re still not sure what that’s all about. She continues to give the nurses fits with IVs. The sites keep getting either messed up by the antibiotics they have to give her or just won’t stay open. It sounded like they had half the hospital in there this morning trying to get a good site picked out and fixed on her. Since we can’t do our regular bowel program at the hospital yet she is on meds to help her system keep moving, but it’s making some rather messy results that keep making a mess of her incision site. Because infection is still a danger at this point every messy diaper means someone from Neurosurgery has to come up and clean her up. I expect they will be troubleshooting with us very soon to find a way to get her back to her regular program! We did ask today what shape they expected her to be in when she’s ready for discharge and we were told she should be able to be up moving pretty normally (but obviously with a lot of precautions to protect her back). I still don’t know exactly what that will look like, but I’m going to bring her walker up tomorrow so she can start trying to get up and we’ll see how the site holds up. The kids got to come up and visit for the first time today and it was good…and tiring…to see them all together again. They were all excited to see Leeza and then immediately wanted to start playing with all her new goodies, which started the sibling squabbles back up. Philip and I will (hopefully) be experts at conflict resolution by the time this gang is grown!

Leeza ended up with a roommate today and we got to see one of her friends from a previous visit who is also back. Please be praying for these little girls. They’re there for very different reasons, but it’s hard on their families and them.  We’ve prayed for a while that God would give us the chance to minister to some of the other families we meet up there and we continue to hope for those opportunities. Thank you for your continued prayers for our family…they are felt and it’s obvious that God is answering them.

Quick Update

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Leeza was moved to a regular peds floor today, which is much more entertaining for her. She has a low fever, but it’s come down some since yesterday so no on is too worried. She was started on pretty high doses of an antibiotic just in case because the risk of infection after this surgery is one of the biggest dangers and because she has a shunt, which can also get infected. Turns out that antibiotic can be toxic to flesh and, according to Philip, it blew out her vein and swelled up her arm. The ‘antidote’ is 5 shots given simultaneously by 5 different nurses and then 5 little band aids. I’m surprised we didn’t hear her yelling all the way here at home. After more problems with IV sites they finally settled on one near her elbow so now she not only is stuck laying on her side, but she also can’t bend one arm. Hopefully a better solution can be worked out soon.

She also leaked a little bit of some fluid on her bandage and it’s unclear whether or not it was a little spinal fluid or not so she’ll have to stay on one side for 5 days instead of just 2 to make sure it doesn’t happen again. They flip her from side to side every 2 hours to prevent pressure sores, even at night, so sleep has been a little rough. Philip said they did manage to flip her and perform a whole neuro check (flashlight in her eyes, make her kick, make her squeeze their fingers) last night without her ever waking up. That’s one tired kid! Somehow Philip stills looks amazingly good. I’m going up every 2 days to bring meals for Philip and new things for her to play with. Hopefully the other kids will get to visit her for the first time on Tuesday. They understand that she had surgery, but can’t figure out why she and Daddy have to stay gone so long.

Despite all the drama today, things are going amazingly well. Leeza is on a slight sedative that makes her a little less antsy than usual and she is now allowed to eat. I hear she had a blast making some trick or treat bags tonight with some of the volunteers and another group came by with candy. A borrowed IPad is making life SO MUCH easier up there since she can’t do much but lay there. Her incision site looks really good so far and Dr. M is still hopeful that she’s gained some more function when he checked her today. Our church family has rallied around us again and is helping take care of all the little details we can’t handle right now and we have even more people praying for us. And at the end of the day, even with a tense moments, God is still in control and helping us walk through this.