Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged surgery

Surgery Update

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Just a quick update for those who were praying for Leeza today…surgery went really well and she’s awake and doing fine. She did not need as much bladder reconstruction as we originally thought so the surgery was only 6 hours long and she doesn’t have quite as much to heal from. That said, the poor kid has tubes coming out of her all over the place to drain most of her abdomen as it heals and some are pretty sensitive. Unlike her other surgeries, this one took place in an area where her nerves work pretty well so she feels most of it. Obviously two of those holes in her will remain (part of the surgery was to install ports for cathing and enemas), but the others will be allowed to close up when the drainage tubes are no longer needed. The doctor was completely surprised when she opened Leeza up to find that her bladder and appendix (which was used to make the internal part of her enema tube) were larger than most adult organs. We’re not really sure why this happened, but it made the surgery MUCH easier and seemed to make the residents who were watching the surgery to learn very happy because it was easier to see. Once again God was watching over her and helping her through another procedure that could have been much messier and dangerous.

Thank you to everyone who has been praying for her today and please keep praying for pain management and that we would be able to help her keep all those drainage tubes in place while they are needed.

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.

Vacation

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Leeza in HospitalOur life has been a little unconventional lately, so it stands to reason that our vacation would be as well….we’re spending it at University hospital while Leeza recovers from her surgery! She had her spine detethered today and it went great. What was expected to take 6 hours took 3 and as Dr. M came to talk to us his face reminded me of one of the kids when they know they just did something really cool. He explained that her lower spine was pretty much a mess, partially due to spina bifida and partially due to whatever procedure was done on her when she was born. As they traced up her spine they found that the spinal chord was totally unprotected from about L5 down because the bone and muscles that should have grown over them just hadn’t. She had as little as 3mm of skin covering parts of this area. I am so glad we didn’t know that beforehand! Dr. M was able to pull the muscles together over this area, use a graft, and do some creative suturing to give her about 1.5 inches of protection now. He also noticed that some of the bones in her lower back/hips had no padding and those were buffed down a little to prevent them from turning into sores later as they rubbed against her skin. The nerves were detached from the bony part of her spine and then tested to see how they were responding. When the same test had been done yesterday she had no response from most nerves, but today there was a response in a hamstring and a big toe. There’s no way of knowing now if that will correspond to increased function as she heals, but it does mean it’s possible, which is VERY exciting! She’s currently hanging out in PICU while Philip and a team of nurses try to keep her from rolling over onto her back, ripping off her bandage or pulling out her IVs. Not the most relaxing vacation, but it’s one we’re awfully glad has finally come!

Once again it was amazing to watch as God’s hand so obviously took care of this little girl. She has had so many close calls and as Dr. M was explaining that her spinal fluid and nerves were almost totally unprotected I started crying. Once again, God had kept her safe. This surgery wasn’t supposed to make anything better, but we’re coming out of it with the possibility of more nerve function. Philip has this funny feeling that one day Leeza will walk by herself and I’m beginning to wonder if she will too…not because she should be physically able to, but because God just seems to keep allowing her to do things that surprise us. I have no idea what He has in mind for Leeza, but His continued care of her is amazing to watch and keeps leaving us praising Him.

 

All Growed Up

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Leeza - Apple Doll

Leeza and her apple doll.

Despite Grace and Leeza’s best efforts to convince me they are ‘all growed up’ and can do what they want, they are in fact still just 3 and 5. However, Leeza’s brain HAS been growing, which has been cause for much celebration around here. Over the past 2 weeks we’ve had 2 more MRIs done and the fluid on the outside of her brain is almost completely gone. The growth is obviously changing how her brain functions because she is suddenly able to remember most of her colors, shapes and even how to write most of her name…ok, so you have to be looking for it, but WE can tell she’s writing her name. It also means we’re finally back to a place where it’s safe to try to move forward with the spinal surgery. She is scheduled to have her spine detethered October 28th. Basically, the doctor will remove all the nerves that have become attached to the bony part of her spine. This won’t really improve anything, but it will stop further deterioration of her nerves every time she goes through a growth spurt, which lately seems to be every few weeks. We would really appreciate prayers over the next month as we try to get her to this surgery. She has to remain healthy and this has become increasingly difficult because she got MRSA a few weeks ago and is now a carrier. We’re doing everything in our power to prevent another outbreak, but in the end no amount of sanitizing or washing or medicine or bleach baths can keep her well. We’re just going to have to pray that if God wants her to have this surgery at this time that He will protect her.

While we’ve seen progress physically, emotionally she’s taken a few steps backward. Watching her regress is a lot like sleep training an infant who then refuses  to sleep at night anymore…we know what she’s capable of, but she won’t/can’t do it anymore. The fear of abandonment has resurfaced and, with it, the screaming fits. All I have to do is walk out of the room she’s in and it can lead to a major tantrum. Her self control and feelings of security had been doing so much better this summer, but now are returning to what we saw from her last winter. We’ve also noticed that as she and I were beginning to bond she began to sabotage our time together. None of it was a conscious choice, but it’s still incredibly effective. As I learn more about how kids respond to early neglect part of me gets frustrated and doesn’t believe all the psycho babble and that something that happened when she was 1 month old could affect her this way 5 years later, but it’s pretty obvious that she doesn’t react to things the way other kids do and then I have to admit that I don’t understand it, but I do have to learn how to help her get through it. Watching these steps backward makes me realize that all those hopes of a quick recovery, that every adoptive parent has, are misplaced. This will be a long road and it’s hard for me not knowing what that journey will look like at all. And once again I’m convicted that I’m supposed to be faithful and trust God with this journey. So I ask for prayers in this area as well…that we would be able to walk through these next few months of surgery and recovery and not get bogged down in the details, but be able to see how God loved and provided for us.

Gettin’ Better!

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We headed over to the U today for an MRI to see what Leeza’s brain had been up to these past 7 weeks and got some good news! The fluid that we’ve been trying to get rid of around her brain has shrunk quite a bit so her body is finally kicking into gear and adjusting to the pressure change the shunt created. We had hoped to hear that Dr. M would either relieve the extra fluid at this point or be happy enough with how her brain looked to schedule the spinal surgery, but the down side of her body doing it’s job is that now he wants to wait a little longer to see if it will finish on its own. We left (not being able to see him today) with the thought that we had to wait 6 more weeks to recheck and were probably looking at surgery in December or January. I got a call later in the day, after he’d had a chance to review the scans, and he wanted to see her in closer to 3 weeks and is hoping to get her on the list for surgery in October instead…much better news for us!

Leeza also started alternative Kindergarten a couple weeks ago and is doing pretty well. She’s keeping her teacher and principal on their toes, but they’ve been great to keep trying new approaches when we realize something isn’t working. Getting her (and the rest of the class) from room to room in the school in a timely manner has been challenging because she can’t walk anywhere near as fast as anyone else. Getting the whole class in the elevator has provided some interesting stories, including one where Leeza and another child ended up being almost left in a closing elevator (no telling where she would have ended up!). Her trouble focusing and sitting still have become pretty obvious in the classroom, but we’re working with her teacher to practice some skills at home . Overall, it’s been a great experience for her so far and we’ve been so thankful for the wonderful teacher God provided for her.

‘I Like-a Straw’

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Leeza doesn’t really understand what just happened this week…we explained that the doctor put a straw from her head to her tummy because she likes straws. She actually seemed to like the hospital. Everyone waited on her and she had one-on-one attention from us. She got to eat chicken strips and chocolate milk (when she had an appetite) and stayed up late each night. Life was pretty good, and then we came home and chores and broccoli became a regular part of her day again. It’s going to take some time for her to get used to this! Her shunt seems to be doing just fine and we’ll go back in 2 weeks to have it adjusted to the next lowest pressure and have her sutures taken out. We’ve got reminders of what a shunt malfunction looks like in my wallet and on the fridge and, Lord willing, we won’t have much practice in what that looks like.

The other kids were shuffled between church friends for the beginning of the week as Philip and I took care of Leeza and then Nanny and Ms. Sandy came to hold down the fort the rest of the week. Once again, this week wouldn’t have worked without all the help from friends and family.

All in all I think it went pretty well. Leeza is recovering well, the kids loved having family here and Philip and I learned how the hospital system works so we’ll be better prepared next time. We know now which units have showers, that parents aren’t fed, how to get parking paid for, that the uncomfortable-looking cots aren’t so bad and that we will take charge of Leeza’s meds next time. We also met a wonderful social worker who is helping me wade through the DHS paperwork (yeah!) and got to see my buddy in urology who has helped us through so many difficult days. The next surgery will be in 3-6 months and I feel like we’ll be going into is a bit more prepared than we were this time around.

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!