Biopsy Results

Faster than expected the biopsy results came in and we received a call from Dr. Chen last night. She says that Ainsley is negative for eosinaphilic esophagitis which they thought perhaps she might have as a result of reflux. It would have explained the swelling but I think it’s good she doesn’t have that. The cells do test positive for inflammation/swelling. That’s good in that it rules out some sort of congenital abnormality of the tissue and the swelling should go away. Unfortunately since the doctors have no idea what’s causing the swelling, there is no specific way to treat it. She’s starting a new reflux medicine ranitidine. Although Ainsley doesn’t have classic acid reflux she does still throw up about twice a day from coughing (due to the secretions from the trach). It would be great if it helped but she was on Prevacid in the past, and that didn’t help. Over the last 2-3 weeks she has been throwing up less, and when she does I give her water by mouth to try to wash away any acid. I figure it can’t hurt and maybe it’ll help. They would like the swelling to go down some to make surgery on the vocal cords easier. So we’ll be hoping that somehow something changes and that the swelling starts to improve. She has a speaking valve (PMV) that allows her to inhale through the trach but restricts airflow out of the trach requiring that she exhale by mouth/nose and therefore push air past the vocal cords to achieve vocalization. Now she can wear it for a few minutes before it builds pressure and shoots across the room. If she starts to be able to tolerate that regularly we’ll know that the swelling is reducing. If that happens of course we’ll let everyone know.

Hip Surgery and Laryngoscopy

We wanted to let everyone know that after some drama we made it home from the hospital tonight and Ainsley is doing pretty well. I think she’s happy to be home. Me too. One night in the hospital is enough for me.

As you know Ainsley has hip dysplasia. In other words the legs popped out of the hip sockets and don’t stay in place. Attempts to correct the condition with a Pavlik harness when she was a newborn failed. There was some improvement in one hip but not sufficient improvement in the other. We’ve known that she would eventually need the surgery and a cast to keep the hips in place while the bone grew into place to form a more secure ball and socket. They were able to place one hip with the less invasive closed reduction however the muscle was tight enough that they still had to make an incision to cut the muscle to “release it” and get the leg into place. The other hip needed an open reduction which means they had to clean out the hip socket before repositioning the leg. After the surgery she was placed in a body cast. It goes from the tummy to the ankles. Luckily our orthopedic doc doesn’t use the bar between the legs. Even so the cast is bulky and will require a new wardrobe of specifically sized items. Mostly big dresses and Baby Legs. When you see the cast, you’ll understand what I mean. Our skinny little girl now looks mighty chubby.

We had some problems with the cast. They had to re-cut it to allow better access to the gastrostomy. The way the legs were bent made it difficult to position her in her carseat and stroller. In the end we had to order a special car seat from a medical supplier that is designed especially for spica casts and even that didn’t fit her properly. They were going to redo the leg cast (mostly due to the car seat) but the technician felt it would compromise the integrity of the cast and he couldn’t reach the doctor so we had to pad the carseat with a blanket (against hospital policy) to get her home. Perhaps we’ll get it corrected next week. She’ll be in this cast for 6 weeks, have the cast replaced (for growth), will wear that for another 6 weeks and then a brace 24/7 for another 6 weeks. After that the brace may be used less frequently, depending on how secure the hips are in the sockets.

The biggest challenge is mastering diaper changes so that the cast doesn’t become soiled. It is inevitable that it will, and it’ll stink. We have the added challenge of the gastrostomy and the fact that she throws up a couple times each day. Trying to keep the cast clean and dry is going to be tricky. It’s also bulky and heavy making it awkward to hold or move her. But as with all this stuff, it gets easier the more you do it.

Typical Ainsley style, she’s pretty happy. Not too fussy about it all, although she’s obviously still sore. While we were in the hospital she discovered that the wrapper from a suction catheter makes a really interesting toy. I hope that since her movement will be restricted she’ll focus on other activities, like that.

The laryngoscopy showed that the swelling in her airway is still the same. They did a biopsy this time, that we hope will shed some light on the cause of the swelling. We hope to have results in about a week. They pried open the vocal cords this time and saw what appeared to be some scar tissue restricting the movement of the cords (presumably from the intubation during the first 5 weeks of her life). They think they may be able to do some reconstructive surgery on the area as well as surgical removal of a granuloma (tissue growth) some time next year. What isn’t clear is if they can operate if the swelling doesn’t improve. Our otolaryngologist was paged to surgery during the conversation but we’ll probably get clarification on that part when we get the biopsy results.

We’ll let everyone know if there is any new news.

Ainsley Recovering Eyes Finally Open A Crack

Thanks for your e-mails and calls. I just wanted to let you know the most recent news. Ainsley seems to be in less pain and generally a bit happier. I think the swelling is pretty well gone. It’s hard to tell how much is just the new shape of her head. Her famous smile is back. Today I even saw her laugh. It’s so great to see her personality come back. She’s still a bit clingy more so than when she went into the hospital. My hope is that it will lessen some when she is better able to open her eyes. It’s hard to see her this way. But it has improved a bit each day. Now she can open them a crack, enough to see when she wants to. It seems to take a bit of effort so she still spends a lot of the day with her eyes closed. She’s also sleeping a lot which I’m sure will help her heal. On the nursing front, things turned around and the agency was able to find a day nurse to fill in some days. She won’t be here every day even though the insurance authorized it. That’s just how it goes when there is a nursing shortage. We have 2 more days scheduled. Her future availability is not confirmed but I’m thrilled to have any help and hope they’ll call to give us more days next week. Today was her first day and she’s great. Very nice and competent. Surprisingly she happened to need a trach herself for pneumonia last year. My hope is that I can now spend some time focused just on the other kids and that we might finally get out of the house and do something fun before the summer is over. So far it looks like the highlight of the summer for the kids was camping in the tent in the backyard with Steve while Ainsley and I were in the hospital. It feels like it’s going to be back to school any day. You know how the days fly.

We're Home!

I just realized we should have sent another update. We were discharged last night and arrived home at about 7:00. Ainsley is doing okay. The swelling has gone down a lot. She’s starting to try to open her eyes but is having a difficult time. Perhaps due to swelling. Perhaps because it feels different since she now has more bone above her eyelids. We are keeping her medicated which is keeping the pain under control. Now that we’re back home I’m having to start right in dealing with the insurance problems about our in home nursing. It’s prevented the nursing agency from getting paid and if it doesn’t get resolved we’ll lose our nursing completely. As you all know we’ve been house bound all summer. The kids could use some fun so if you have time to take them during the day or an evening please let us know.

Cranial Reconstruction Today

Ainsley had her surgery today and thankfully everything went well. There were no complications and she’s now recovering in the surgical ward. The procedure was apparently complex and took longer than expected, almost 7 hours, but Ainsley did great throughout. She is sedated but appears to be very comfortable at the moment.

Her appearance is pretty remarkable. Her forehead, brow and temple area have been completely reshaped and her head is now very round with a prominent brow area. The boxy forehead is now really smoothed out and her head at the sides is much wider where it was previously indented. She has significant swelling which will peak sometime tomorrow but otherwise she looks very good. The doctors had images from the post-op CT-Scan and needless to say, the work they do is simply mind-boggling. Even knowing what to expect it’s still amazing to see how they piece all the bones together to create a new shape.

Susan is staying at the hospital throughout the night while I take care of Evie and Adrian. I’ll be heading back over tomorrow morning for a visit, but we don’t expect Ainsley to do much for at least another day. She’ll probably be in the hospital for at least 4 days but probably longer while they monitor her. We’ll send another update out as soon as we have more news.

Thanks!

Steve

Craniectomy and Reconstruction

Ainsley’s surgery went really well. We took her in at 6:15am yesterday. She was prepped for surgery. Then they took a look in her throat with a scope to check that upper airway. We haven’t had a chance to meet with the doc about her findings because she (the doc) was in surgery all day until after we left the hospital. Afterward they did the craniotomy and finished in the afternoon. Then it took awhile to get her settled into her room and give her medication. When we left at about 6:45pm to get the kids she was doing well and was pretty sedated. The shape of her head is pretty dramatically different. It’s incredible what they can do so quickly. This surgery rounded out the back of her head. Even her forehead and face look different to me. Somehow the correction in the back still affected the front slightly. It’s odd to see your child’s face change in a matter of hours. It’s not bad or anything. It’ll just take a little time to get used to it. Probably to anyone but a mother it will not be noticeable. She will have another surgery in 6-8 months for the forehead and eye area. We are back to juggling our schedules to visit the hospital. I’d forgotten what a pain that is. She’ll be in the PICU for another day or so then will move to the surgery floor and stay for another few days. Probably she’ll be home by the weekend. So at least she shouldn’t be there for too long this time. After the surgery they did a CAT scan and we have a picture so if we see you, you can see what they did to the skull to make the change. It’s really incredible. It’s amazing what ordinary men can do. (or extraordinary ones). Hope to see you all soon.

Edited: In fact her face only looked different because the swelling had already set in.