Nov 23, 2006

Ainsley Got Her Tracheostomy

Happy Thanksgiving to you all.

Ainsley got her tracheostomy yesterday. This was great because otherwise she’d have been waiting around in the ICU for another week. It was fairly quick. She was in the OR for 1 ½ hours during which they also did another bronchoscopy and laryngoscopy (i.e. checked her out with a scope) to reevaluate her airway. We were able to stay with her into the night, which was really nice. Especially because we helped keep her happy by having her suck on our finger(s) for a few hours until they could start her feeds again. It took her awhile to figure it out because it feels so different without the tube in her mouth. It is so great to see her sweet little face. When they brought her back they connected the trach to the ventilator and gradually reduced the settings over the night. The great news is that she is now OFF THE VENT! Yea! She’s breathing room air, all on her own. There is a humidifier tube connected to the trach and my understanding is that this is a necessary part of having a trach that will continue until the trach is taken out. She’ll stay in the ICU for a week for recovery and to allow the stoma (hole) to heal. Then she’ll be moved to the floor (a regular hospital room) for care. We’ll receive training on how to care for a trach and the occupational therapists will start working with her on feeding. And, as I said in the last e-mail we’ll be waiting to get a home care nurse lined up before she’s released. We are nervous about caring for a trach but are excited to be moving toward getting Ainsley home.

The very encouraging thing is that the otolaryngologist, Dr. Chen, saw 2 polyps on the vocal cords, one on each, that press against each other in the middle and basically causing a substantial obstruction in the airway. (We’ve got a picture which you may be able to see in the future.) She has said that it looks to her as if Ainsley would be able to breathe if the polyps were gone. (Of course that’s not for sure.) The polyps were caused by the breathing tube (so that doesn’t explain the initial source of the problem). Dr. Chen wants to wait to see if they may go away on their own. She’ll look in a month to see if there is improvement. After 2 months if they aren’t gone she can remove them with laser surgery. They’d even considered removing them yesterday however anytime they perform surgery on the vocal cords there is risk of causing damage so they opted not to. They can also try GRADUALLY downsizing the trach tube and capping it off to test whether she can breathe without it because the inflammation and polyps are gone. So, that is encouraging.

We also met yesterday with an orthopedic doc to review her hip dysplasia. Unfortunately the pavlik harness didn’t help enough to be fully effective and one hip is still partially dislocated and the other is fully. The good news is that they removed the harness the bad news is that she will need a cast in a few months (not yet because the bones are more like cartilage until they are a bit older). Here’s a link if you want to know more about what this is.
Ainsley is still not as alert as she was before the surgery. She’ll probably need another day or two to recover before having visitors.

That’s about it and I’m off to the hospital now.

Nov 22, 2006

Tracheostomy Scheduled For Tomorrow

Yesterday they made their final extubation attempt. Ainsley breathed for about an hour on her own after the breathing tube was removed, but with great difficulty. It was clear that it was tiring and stressful for her and she still had stridor (the wheezing sound). The ENT doc said that it looked like the swelling in the throat/upper airway had improved since the last time she looked but was about as bad as it was the first time she looked.

Steve and I want Ainsley to come home. In the past few weeks she’s started changing a lot. When I visit she sucks on my finger for the entire time (up to an hour or so) despite the fact that she has a tube in the way and she has to fight the gag reflex initially. And she loves to be held. And if we are lucky enough to be visiting during the infant “quiet alert” period she will look into my eyes while I’m holding her. She’s even started taking a pacifier, which helps keep her happy when we aren’t around. It’s obvious that she benefits from being close to us and I think it will help her development not to have that tube in her throat. So we have decided that it’s time for her to do a tracheotomy. Last night they added her to the surgery schedule for today. It’s possible that she’ll be bumped if there is an emergency but we’re hoping it’ll happen today so we don’t have to wait until next week.

Yesterday we met with a team of 7 doctors and social workers. Mostly to review information that we were already aware of. Unfortunately they did tell us that they estimate she’ll stay at Children’s for the next 6-8 weeks (maybe now 5-7 weeks since I was able to persuade them to squeeze the surgery in this week) if things go well, longer if they don’t go well. She’ll first spend a week recovering from surgery in the ICU. Then they will need to train us on how to care for her tracheostomy (it’s pretty involved). The occupational therapists also have to assess her ability to feed (they do it gradually so it’s safe) and make sure she’s doing well feeding. There may be equipment that we have to get for home. And, most importantly they need to have a home care nurse available to come relieve us at home while we sleep and there is a shortage of home care nurses. Having a nurse at home would probably be temporary but is important initially for Ainsley’s safety and our peace of mind. Our current plan is to modify the playroom as Ainsley’s “bedroom” so that she is downstairs with me during the day and that the nurse can be downstairs with her while we’re sleeping. Of course I’ll be pushing to shorten the amount of time she stays at the hospital if at all possible.

After Ainsley is moved out of the ICU onto the main floor we are hoping things will normalize some and we’ll have more of a regular routine. And it may be easier to have visitors. Especially since it should be easier for her to be held. (It’s not easy for the nurses to move her now because of the breathing tube and all the other wires. And only one person can visit with a parent at a time.)

Thanks again for all your offers to watch the kids (And yes, Evie and Adrian are doing just fine), bring dinners and help out in other ways. We know you are all thinking of us and hoping for the best for Ainsley.

Nov 21, 2006

Ainsley Will Need Need Tracheotomy Surgery

Sadly, Ainsley still had significant difficulty breathing today after being extubated. She breathed on her own without the tube for about an hour but it was obviously really hard for her. So she is going to need a tracheotomy. They did not have any openings on the surgical schedule this week but will try to squeeze it in at the last minute if possible. Otherwise she will be scheduled for a tracheotomy early next week.

After the extubation we had a conference with a team of 7 doctors and social workers to discuss her various conditions. Most of the information was not new. The one thing we did learn that was hard to hear is that they expect her to remain at Children’s for another 6-8 weeks if things go well, longer if not. This is because the tracheotomy is a week away, there will be a week in the ICU for recovery and then they will need to train us on how to care for her (it’s pretty involved). They also have to assess her ability to feed and start feedings. And, most importantly they need to have a home care nurse available to come relieve us at home while we sleep and there is a shortage of home care nurses. This would probably be temporary but is important initially for Ainsley’s safety and our peace of mind.

We just got home, ate and now I have to go to a meeting. We want to be able to talk with you each personally and will try to call you in the next day or so.

Nov 15, 2006

Extubation Delayed Again

I wish I had some real news to report but that’s not the case this time. Some of you knew they were planning an extubation attempt for Wednesday/Thursday, with a spot on the surgery schedule for a tracheotomy if it wasn’t successful. But on Tuesday night we met with the docs and they revised the plan. They brought in the pulmonary team to consult. They suggested a different steroid and more antibiotics. They are going to do the extubation attempt next week instead, maybe on Tuesday/Wednesday. So….we’ll let you know when there is any new news.

Nov 9, 2006

Ainsley Failed Extubation

As most of you know, today was the day Ainsley was to be extubated. Unfortunately when the tube was removed she still had difficulty getting enough air through her upper airway. The ENT specialists looked with a scope and found the swelling was even worse than it was previously. Probably due to the infection she has. They re-intubated and will finish the course of antibiotics she’s been getting. They will try taking it out again mid next week but it’s likely that they will end up doing a tracheotomy. Her condition seems to be puzzling to the doctors and even the specialists. They are unsure of why the airway is so swollen. It’s possible it’s just from the tube itself. As we’ve said, she’s got a strong drive to breathe and is able to do so, so long as the tube is keeping the airway open. So it does seem that eventually this will work itself out. For now, it looks like we’ll be at Children’s for quite a while longer.

Nov 6, 2006

No Extubation Today As Planned

Sorry to send a mass e-mail but you can see how many of you there are and time is in short supply these days. It’s nice to know we have so much family and so many good friends that are thinking of us and wishing the best for Ainsley. Again, I want to thank you all for your offers of help. We wanted to give you an update on what’s going on with Ainsley.

They have decided not to extubate today and put it off until later in the week. Last week it seemed she had caught a cold but testing revealed that she has a mild bacterial infection in her throat (it’s rather common when kids have a breathing tube). They started antibiotics Friday evening. They also want to give her more steroids after the antibiotics (they can’t be given at the same time) to reduce any possible remaining swelling in the upper airway. And…It just doesn’t make sense to try to take out the tubes when she’s sick. They are saying it’ll be Thursday at the earliest. It’ll depend on how soon the infection clears. Whatever happens, it’s unfortunately still going to be awhile before she comes home. As we had said before, even if she’s able to breathe well after they extubate she’ll still have to be monitored to make sure her breathing is very stable, and they’ll have to make sure she has no difficulty feeding.

We’re anxious and having difficulty being patient but are still hopeful that it’ll be successful this time. The kids are fine, a little tired of visiting the hospital but life is going on pretty much as usual for them. We will, of course, let you know what happens.