Still Swollen

Some of you knew we had a scope scheduled for Ainsley the Monday she was discharged from Children’s for RSV. It was rescheduled for last Friday and we went. Unfortunately the swelling was only ever so slightly better, and cobblestoning was still present on her epiglottis. It was disappointing but not really surprising. So that confirms we will be traveling to Cincinnati 4/6-4/11 to get a second opinion with the world’s best otolaryngologist. Here’s his bio: http://www.cincinnatichildrens.org/svc/find-professional/c/robin-cotton.htm Please pray (or send positive vibes) that she doesn’t get sick and can’t go and that this doctor will have some ideas on how to get that swelling to go away so we can get this trach out.

That's What I Get For Bragging - RSV

Lately I’ve been bragging about how remarkable it is that Ainsley has been so healthy. Kids with trachs are more likely to get sick and far more likely to end up in the hospital than “regular” kids when they do get sick. Even her doctors were surprised she had never been hospitalized other than for a surgery. So of course I was tempting the gods. Adrian brought home what seemed to be a cold and passed it to Steve, passed it to me, passed it to Ainsley. Only Evie was spared. It seemed fairly mild until Thursday when she developed a fever of 103. It still seemed she was going to be okay. The fever would come down some with Tylenol and she was still oxygenating at 97-98% or so which is still really good even though it’s a little low for her.

Then Friday evening I took her into the bath to give her a chance to move her legs with some support in the water (our newest form of physical therapy). When she was laying on the bath mat I saw that her chest was retracting (caving in with each breath in the sternum area) slightly when she breathed. Later we gave her a feeding and layed her down on her tummy to sleep like always. About 9:00 she started to cough a lot and her oximeter started to beep, she started to throw up as I was turning her over to suction her. I could see that her lips were blue as well as her feet. We tried suctioning several more times and things got worse, and her oxygen levels started to drop into the 80’s then 70’s. After a few minutes we tried giving her some breaths with the resuscitation bag (that was the first time I’d ever had to do that) and giving her oxygen. The oxygen helped bring her oxygen levels up some but when I went to put her in the crib her eyes sort of rolled back and she became non-responsive even though her eyes were open. I was afraid she was having a seizure so I asked Steve to call 911.

Earlier that night some person parked on the wrong side of the street and the road ended up getting blocked off because another idiot parked next to that car. All night long people were driving down the road and getting stuck right in front of our house and honking their horns. So of course this would be the one night we’d have a medical emergency. So I’m watched for the aid car, hear the sirens approaching as they then drive PAST our house because they can’t park normally because of this car. The lady came out about then as the ambulance is pulled up behind her car, waiting for her to get in and pull out. Aaarrrggghh. Once they get in the house we go over her medical history and give her some time to see if things would turn around. We decided it would be best to take her to the hospital since she was requiring oxygen and was not really responding.

They did a chest x-ray and saw something they thought perhaps was bacterial pneumonia caused by aspiration of vomit. She had a high number of new white blood cells which tends to indicate the body is fighting off a bacterial infection. They also took a sample of her trach secretions to do testing so we were waiting for those results. We had to wait to get a room because the hospital was full and were finally admitted at 3:30am. Steve stayed home with Evie and Adrian and I called to give him updates.

Evie and Adrian were a little frightened while Ainsley was desatting and while waiting for the ambulance but once it got here they were excited to get to go in it. The two ladies driving the aid-car were really nice and reassuring. They got a little scared again when they drove Ainsley away but it helped that Steve stayed behind and they went to bed like normal. Evie, being her usual artistic self during this time made me a good night note and stuck it in my pocket as well as drew me a whole 8 ½”x 11” picture of us hugging to take with me to the hospital.

It turned out that the secretions tested positive for RSV and after another x-ray they were able to conclude that she did NOT also have bacterial pneumonia nor viral pneumonia. We really don’t know if she had a seizure. She does not have a history of seizures. I think the whole thing was just a bit much for her and she was kind of stunned.

We took her off the oxygen Sunday night and watched her. Monday she still had the chest retractions because she’s having to work harder to breath but she was oxygenating in the 90’s so we were able to leave the hospital and we got home at 8:00pm last night.

Here’s a little info about RSV that I copied from the tracheostomy.com website:

What is RSV?
RSV stands for respiratory syncytial virus, the most frequent cause of serious respiratory tract infections in infants and young children. This is such a common virus that virtually all children have been infected by RSV by the age of 3. In most children and adults, RSV results in a respiratory infection that is not distinguishable from a common cold. However, for infants and children with underlying conditions, such as prematurity, lung, heart and immune deficiency diseases, RSV can be a very serious respiratory illness requiring hospitalization.
Avoid crowded places and avoid contact with people who have cold symptoms. When a family member is sick, extra precautions must be taken by washing hands often and preventing the spread of infectious secretions on tissues and objects.

Today she’s tired and still working harder to breath than normal but is oxygenating at 98% without oxygen so I think in a few days she’ll be much better. I’ve got it too and am hoping to get some rest now that we’re home.


Even with RSV the girl is happy!

Had To Call 911

Hey all, I just wanted to give you a quick update that we had to call 911 last night (~9:00 pm) because Ainsley was having trouble breathing. She had a bad fever and we could not keep her sats up without giving her oxygen. She looked very blue and was very lethargic. The medics (ambulance and fire) arrived on the scene and it was determined after about 20 minutes that she seemed stable but should go to Children’s, so we got her loaded up in the ambulance and they transported her. I stayed home with Evie and Adrian and Susan followed in the van.

Ainsley is doing a bit better today but they believe she has a bacterial infection in her lungs. It’s possible one of the recent times she threw up (a frequent occurrence) might have got down her trach and into her lungs. They want to keep her for probably two more days and currently they have her in isolation, which is actually a good thing since you get a private room that way. J However, it also means she can’t have any visitors including Evie and Adrian.

Were going to make a trip over there this afternoon so I can deliver some clothes but most likely she won’t be back home until sometime Monday. Other than that, all is well and everyone is doing fine.

Steve

Ainsley's Out of the Cast!

It’s time once again for another update. Yesterday Ainsley got out of the spica cast. YEA! It was crazy to see how tall she is now! Her legs were pretty itchy but the skin otherwise looked good. They often say kids don’t like the feeling of being out of the cast right away but not Ainsley. She was pretty darn happy! Unfortunately she still has to wear a brace to keep her legs in the outward position for 6 more weeks, 20-22 hours a day. It is smaller and lighter so that is nice. But it does look like she’s going to stay in the Baby Legs, and dress uniform that she’s been sporting to make diaper changes a little easier. It’s still going to be a pain to diaper her. (Sigh) The angle of her legs is different so we have to relearn how to position her, hold her and what movements are comfortable when she’s out of the brace, but I’m sure that’ll come with time. The othro department will do another x-ray on March 18th. At that time it’ll have been 4 ½ months. What we’ll be hoping to see at that time is that the cartilage has formed nicely around the ball of her leg bone and that it keeps it in the proper place within the hip since her hip sockets are a bit shallow. Beyond 4 ½ months there is not a lot of advantage of keeping the legs in that position and there is the drawback of the delays it causes with her motor development. But they will still want her to wear the brace for sleeping at nap time and at night. Two great things about the brace, she now fits in her carseat again which will hopefully mean she’s less likely to throw up in those unfortunate situations when I have to drive with her, because she’s more upright. And she fits in her highchair again so she’s able to join us at meal time again (instead of being on a bean bag on the floor). Here’s a link to more about what hip dysplasia is for those who are interested: http://orthopedics.seattlechildrens.org/conditions_treated/developmental_dysplasia_of_the_hip_ddh.asp

Here’s a link to what the brace looks like: http://www.seattlechildrens.org/child_health_safety/pdf/flyers/PE405.pdf

The other big thing going on is that I’ve been working, since December, on getting Ainsley in to be seen by a world-renowned otolaryngologist in Cincinatti Ohio. It’s a multi-step process and we’re now in the scheduling phase. It looks like I’ll be shipping out on my birthday April 6th (what are the odds that would be the only week available) but we’re awaiting confirmation. It’s tricky to find a week when all of the necessary doctors are available. Essentially we’re looking for a second opinion and hoping that because this doctor sees the most complicated airway cases in the country, maybe the world, he may have new ideas about what is causing the swelling of her larynx (vocal cords) and how to make it go away. Here’s a link to this doctor’s page for those who are interested: http://www.cincinnatichildrens.org/svc/find-professional/c/robin-cotton.htm We’ll be there for a full week of out-patient testing with one night in the hospital for a scope, biopsy and lung assessment under anesthesia. The plan is that I’ll go alone and Steve’ll stay behind so it’s not too hard on Evie and Adrian.

The other really exciting thing is that she’s learned how to turn the pages of a book, which requires a pretty complex set of motor skills and cognitive ability. Here’s a You-Tube link that I posted for my trach forum friends. http://www.youtube.com/watch?v=LF8sDpAiztU

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.