Jul 31, 2007
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.
Jul 24, 2007
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
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
Jan 24, 2007
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.
Edited: In fact her face only looked different because the swelling had already set in.
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. http://orthopedics.seattlechildrens.org/conditions_treated/developmental_dysplasia_of_the_hip_ddh.asp
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.
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. http://orthopedics.seattlechildrens.org/conditions_treated/developmental_dysplasia_of_the_hip_ddh.asp
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.
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.
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.
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