Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged hospital

Yes, We Are Still Alive

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Leeza Dean

Wow, keeping up with blogs hasn’t been my strength lately! Leeza did make it home from the hospital just fine and spent the next 3 weeks hidden here at the house while she healed. It was important that she didn’t catch anything during that time because if her surgical site became infected it could turn into meningitis. We made it through that time fine and her back is almost completely healed now. She missed a month of school, but did school here with the rest of us to keep her in her routine. Since the surgery her core strength has improved and she’s able to use her crutches much more often. The hope is that some day she’ll be able to use them as her primary mode of transportation, but for now we’re just letting her get stronger and continuing to remind her that she can’t use them as weapons when someone upsets her. She has gained some sensation in her lower body, which has changed some of her bathroom routines. She still doesn’t feel pain in most parts of her lower abdomen or legs, but she can feel pressure. It’s taken her some time to figure out that pressure isn’t pain and she’s stopped yelling every time she feels something unusual. She has gone through another growth spurt after the surgery and it’s been wonderful to NOT see her regress as her nerves are pulled around her body. We met with Dr. M yesterday and he said this growth spurt is not allowing her internal stitches to hold together tightly, which is keeping a very small part of her back open enough to leak some spinal fluid. It’s a very small area and it should heal right up when she stops growing so we’ll keep it covered until then. In the meantime we get to see lots of Xrays of her and it’s funny to see that insanely long shunt tube wrapping all over her abdomen.

After surgery we also experienced a shift in her demeanor. It’s hard to explain, but more days than not she’s starting to act more like part of our family. Even friends have noticed that she’s responding to direction with a look of respect instead of defiance. She’s seeking out approval and hugs from me and is slowly starting to accept the structure I set for each day. And after being home for over year she can now participate in holidays and traditions because she understands at least a little of what they are about. Our hope has been that this will be the year when we get to really start to see who Leeza is and it’s starting to look like God is answering the beginnings of that prayer.

She’s back!

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I got a call this morning that Dr. M had decided Leeza was done at the hospital and she would be discharged this afternoon. She’d been off pain meds for several days, had blown the 6th IV and refused to stay still enough to keep any monitors on. They had also started her back on her regular bathroom routine and I don’t think the nurses were too excited about having to keep up with that. All of that added up to an early discharge, which was fine with us! Philip is exhausted and Leeza needed to get back into her normal schedule and needs to start building her stamina back up. She’s excited to be free, but can only walk for about 2 minutes before she’s too tired to keep going. We’re supposed to keep her pretty much in isolation for the next week so she doesn’t catch anything while her immunity is down and then we’ll go in next week to get sutures out and do a quick check with Neurology.

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.

Hospital Day

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We just spent another day hangin’ out at the University Hospital, making our rounds to all the departments Leeza needed to see today. Here’s what we found out…

Orthopaedics: As amazing as it seems, we are not hurting her joints when we can’t keep her in her full leg braces. Despite the fact that she can literally walk on the tops of her feet or spin her right leg 180 degrees backward (and never realize it), it’s not causing damage at this point because she’s so little. As she gains weight that will change, but for now it’s a relief. We are going to try a new leg brace system that is more rigid and will connect to her ankle braces, which is supposed to be much faster to get on than her Theratogs. We were also warned that when she’s about 7 or 8 we will likely be looking at major leg surgery that would break the leg bones and reset them so they rotate out like they should instead of allowing her legs to turn inward. Sounds horrible, but apparently it’s fairly common for kids like her and will reduce the need for leg braces as a adult. At that point she’ll also have built up enough strength to figure out what type of equipment she will likely use as an adult (walker, wheelchair or motor wheelchair).

Pediatric Specialist: We’re reworking the bowel program and trying some new meds. We have a few meds we can try to see how her system reacts before we have to move on to more invasive procedures. A J tube is still a possiblity in the future, but not until after her spinal surgery.

Neurology: The right side of her brain has no external fluid!!! It did as of 2 weeks ago. We’ve been waiting for this fluid to drain for months and suddenly it disappeared for no apparent reason. The left side still has fluid, but has also improved a little. We’re going to give her 6 more weeks to see if the left side takes care of itself. If it doesn’t, she’ll have a hole drilled to drain the fluid, we’ll wait a bit to let the brain reattach to the skull (it’s pulled away because of all of the fluid) and then we should be in a place to have the spinal surgery to detether her spinal nerves. Dr. M is sure we’ll be able to get to that sometime this year, which was very encouraging.

All in all it was a very productive day. Since we didn’t have other kids to keep up with we could walk slower and let Leeza push her herself in the wheelchair. She did really well and throughly enjoyed everyone stopping her to tell her how cool her pink chair with the flashing wheels was…and of course all the usual comments about ‘all the curly hair.’

Just Fine

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Just a quick note that we’re doing fine. Leeza was back to normal today and enjoyed playing with some new toys and snuggling with us all day. One hand splint got to come off if she promised to leave her IV alone (so far so good). She ate her breakfast, most of Philip’s and half of mine…safe to say her appetite is coming back! She was moved out of PICU tonight to the regular ped’s floor and we’re hoping she’ll be able to scoot around soon because we hear there are plenty of toys and crafts to keep her busy if we can get out of the room. We’re expecting a Thursday or Friday discharge, but we’ll have to wait and see what the Dr. M says. Philip and I will be swapping places tomorrow afternoon and I’ll stay full time at the hospital with her so if we don’t get posts up in the next few days it just means she’s keeping me busy! Thanks for the prayers!

The Weirdest Goody Bag

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After 7 hours, 2 tests, a doctor’s visit and a teaching session we are home from the hospital. Leeza was not a big fan of the tests (can’t really blame her), but she did great. The staff in pediatric urology was amazing and went above and beyond to make us feel comfortable. They even sent Leeza home with her first Barbie doll for being such a brave patient.

We got new toys too in the weirdest ‘goody bag’ I’ve ever received. We are now the proud owners of a catheterization kit. We learned that Leeza does not have any kidney damage from reflux (a major answer to prayer!), but in order to prevent it from eventually happening and to protect her bladder from further damage she needs to be cathed several times a day. They gave us a crash course in how to cath her, which was amazingly easy at the hospital, but not so easy at home in poor lighting with 3 other kids all crowding around wanting to see what’s going on. With 4 kids 4 and under there is no privacy in our house. :) We came home with a lot more knowledge about how to help her body work for her and we’re just so grateful that once again God seems to have protected her from harm. We have no reason to believe the orphanage ever cathed her so the fact that her body looks as healthy as it does and she hasn’t been overwhelmed by infections is pretty amazing. We’re getting used to hearing doctors say, ‘Well, I don’t know why this hasn’t hurt her but she’s ok.” I’m not sure what God has planned for this little girl, but His hand is certainly on her.