Madeleine continues to fight her cold and appears to be slowly winning. We're happy that she's been able to fight the cold without ending back up in the hospital while at the same time, we're cognizant that we can't wait too long to get her in if she takes a turn for the worse. Here's the really frustrating part-- due to her pulmonary hypertension, there are times when her oxygen saturation levels will drop and the best course of action is to get her comfortable and leave her alone. On face value, that flies in the face of common sense as the immediate concern is to assume that Madeleine's trach is obstructed and to suction to clear the obstruction. Unfortunately, suctioning the trach makes Madeleine mad and when you have pulmonary hypertension and get mad, your lungs clamp down, making it harder for blood flow to get to the lungs essentially creating a vicious circle. We've been extremely pleased with the home nurses so far and we're slowly getting them to recognize when suctioning is warranted and when Madeleine just needs to calm down.
On a different note, I'm happy to report that the medical supply company came out today and changed the pulse oximeter (pulse ox) for a new one. If you've ever seen the movie "Office Space" you'll know of the scene where the two computer programmers beat up the fax machine in a field. I've had visions of a similar scenario with the pulse ox when it begins beeping for no apparent reason in the middle of the night... Its maddening and we're hopeful that the new machine will make life easier and sleep more manageable.
Despite all of these issues, we're still having a great time with Madeleine home and we're slowly settling into a routine with the nurses. We've settled on a core team of four nurses and as they become more familiar with Madeleine, it will take some of the strain off myself and especially Kirsten. Kirsten is the one that worries about all of the small, important stuff and so she's necessarily spent a lot of time training and talking with each individual nurse. I play the role of "big, goofy, happy dad" and also make sure at a high level that the nurses are competent and realize that "big, goofy, happy dad" can turn into "big, angry, protective dad" when warranted. Its a role that I'm perfectly suited for and I recognize how much more difficult and important Kirsten's role is. Once we get Madeleine over this cold and the nurses are fully trained and comfortable with Madeleine, I think Kirsten will relax a little bit. In the meantime, thank her for me if you get a chance.
That's all for now. No new pictures the last few days-- Madeleine isn't quite as attractive with snot dripping down her face. :) We'll try to get a new video and some pictures up once she starts feeling a little better. Take care,
Brent
Tuesday, December 30, 2008
Sunday, December 28, 2008
Quick Sunday Night Post
Hey all,
I added a bunch of pictures in the December picasa folder. You'll see that Madeleine has had a great few days playing with her grandparents including playing peekabo, smiling a ton and just plain being a fun little kid.
That pretty much sums up the last few days and I've got to say, it really feels great. After all of the ups and downs we've been through, since getting home on Christmas Eve, we've had an awful lot of fun.
For the last few days, Madeleine has had a runny nose and is likely fighting a little bit of a cold. While this could be cause for concern, as you can see from the pictures, she's doing fine. We're obviously keeping a close eye on the situation but so far, we're encouraged that she can handle being sick without regressing. That's all for now-- have a good night and enjoy the week with New Year's coming up.
I added a bunch of pictures in the December picasa folder. You'll see that Madeleine has had a great few days playing with her grandparents including playing peekabo, smiling a ton and just plain being a fun little kid.
That pretty much sums up the last few days and I've got to say, it really feels great. After all of the ups and downs we've been through, since getting home on Christmas Eve, we've had an awful lot of fun.
For the last few days, Madeleine has had a runny nose and is likely fighting a little bit of a cold. While this could be cause for concern, as you can see from the pictures, she's doing fine. We're obviously keeping a close eye on the situation but so far, we're encouraged that she can handle being sick without regressing. That's all for now-- have a good night and enjoy the week with New Year's coming up.
Saturday, December 27, 2008
A Picture and Video
Check out the picasa site (www.picasaweb.google.com/brentbushey) for all of our Christmas day pictures. I've posted our favorite picture as well as a video of the first night home from the hospital.
Here's the photo:
And here's the video: (This was the night before we went back to the hospital-- see the post below for details. Still-- its pretty cool and is indicative of Madeleine's activity level.)
Here's the photo:
And here's the video: (This was the night before we went back to the hospital-- see the post below for details. Still-- its pretty cool and is indicative of Madeleine's activity level.)Where do we begin?
The Grateful Dead song goes "what a long, strange trip its been..." Well-- they didn't know the half of it.
After posting the great news on Monday night, life got a little interesting on Tuesday. Its a long story-- see below for all of the details-- but the short story is that on Tuesday morning, Madeleine went into respiratory distress and she ended back at Children's in the ER after taking another trip in an ambulance and was transferred to the CICU on Tuesday evening. Thankfully, she was released from the CICU on Christmas Eve as the doctors determined that her respiratory distress was related to a mechanical problem that shouldn't arise again. We were extremely relieved and grateful that we could spend Christmas morning in our home with our daugther and we're having a great time playing with her.
You're probably asking yourself, "How did you end back up in the hospital after being home for only one day." Well I'll tell you. Throughout Monday night and early Tuesday morning, Kirsten and I checked on Madeleine through the night as her pulse oximeter monitor kept going off. Normally, this isn't a big deal but we were on edge given that it was her first night home. Kirsten got up at 5:30 to see that Madeleine's sat levels were a little low and weren't recovering-- she's usually satting above 95% and she was at about 91%. She and the nurse talked and they decided to suction her as this is the usual solution for a child with a trach. Madeleine hates being suctioned-- try shoving a tube down your throat and see how you like it-- so they weren't surprised when her sat levels initially decreased to the high 80s but they were concerned when Madeleine didn't recover into the 90s. I came downstairs and after conferring with Kirsten and the nurse, we decided to change the trach as there are times when the trach can become plugged and no matter how much you suction, Madeleine won't recover. Again, this frustrated Madeleine and her sat rates dropped a little lower and she failed to recover. We continued to be frustrated and decided to re-position madeleine a number of times expecting that if she could get comfortable, she'd breathe easier and her oxygen levels would recover. We continued doing this for about an hour when we finally discovered that the oxygen supply had been disconnected from the ventilator explaining why Madeleine was satting at a lower level. When we hooked up the oxygen, Madeleine's sat levels recovered and she calmed down. At that point, we realized that Madeleine needed to be suctioned again but we decided that we would let her rest for a while as she'd been agitated for well over 90 minutes and we didn't want to suction again and bother her. This was the regretable mistake we made.
I went to work and Kirsten cleaned up a bit and then jumped in the shower. When she got out of the shower, she could hear the pulse ox and the ventilator alarms going off so she hurried downstairs to see Madeleine again in respiratory distress. She and the nurse suctioned one time and were able to get some secretions out but Madeleine was in severe distress-- her sats were in the 70s and falling and her heart rate was also falling. Not knowing the exact cause, Kirsten dialed 911 and an ambulance picked them up. I received a call at work-- after being in the office less than 5 minutes-- and I ran out the door to meet them at Children's Emergency Room. Once in the ER, the nurses assessed the situation realizing that Madeleine's trach was plugged and immediately replaced her trach. There was concern that Madeleine's pulmonary hypertension was a root cause and/or an infection was related to the distress so they did a full work-up on Madeleine necessitating the admission to Children's and the transfer to the CICU. In the end, all tests came back negative and after a short 36 hour stay, we were released on Christmas Eve with the best Christmas present in the world.
Kirsten and I were a little embarrassed by our sudden admission to the hospital but we learned a great deal from the entire episode and in a strange way, it was very nice to see all of the doctors and nurses that cared for Madeleine for so long. (On a side note, one of her long-time attending doctors walked up to me and said "Man, she wasn't even home for 24 hours?" and walked away smiling.) We were able to talk through all of Madeleine's issues one more time and they really helped us put things in perspective. Additionally, we could show off how much Madeleine had grown in her three week stay at HSC and we now feel much more confident in our ability to handle Madeleine while she's home.
As far as getting her home, we were pleasantly surprised on Christmas Eve when our doctors decided to release her after they were convinced that her admission was simply related to the mechanical eror of her trach getting plugged. When we arrived home on Christmas Eve, the entire transition went much smoother and we had a wonderful Christmas morning that we spent opening gifts and getting used to moving Madeleine and her equipment through the house.
Since Christmas, we've had a wonderful time relaxing at our house-- the kitchen remodel is really paying off-- and we're learning to work with Madeleine's team of nurses. Through this Wednesday, we have full time nursing and then our hours cut back to 18 hours per day. With that schedule, we'll have nursing at our house when we're sleeping as well as when we're at work but will also have some time alone with Madeleine each evening. As you can imagine, we're ecstatic by all of Madeleine's progress and we hope to continue to post the good news-- look for new pictures shortly of both Madeleine as well as the completed kitchen.
Thanks again for everyone's support. We hope your holidays are as relaxing and happy as ours.
Brent and Kirsten
After posting the great news on Monday night, life got a little interesting on Tuesday. Its a long story-- see below for all of the details-- but the short story is that on Tuesday morning, Madeleine went into respiratory distress and she ended back at Children's in the ER after taking another trip in an ambulance and was transferred to the CICU on Tuesday evening. Thankfully, she was released from the CICU on Christmas Eve as the doctors determined that her respiratory distress was related to a mechanical problem that shouldn't arise again. We were extremely relieved and grateful that we could spend Christmas morning in our home with our daugther and we're having a great time playing with her.
You're probably asking yourself, "How did you end back up in the hospital after being home for only one day." Well I'll tell you. Throughout Monday night and early Tuesday morning, Kirsten and I checked on Madeleine through the night as her pulse oximeter monitor kept going off. Normally, this isn't a big deal but we were on edge given that it was her first night home. Kirsten got up at 5:30 to see that Madeleine's sat levels were a little low and weren't recovering-- she's usually satting above 95% and she was at about 91%. She and the nurse talked and they decided to suction her as this is the usual solution for a child with a trach. Madeleine hates being suctioned-- try shoving a tube down your throat and see how you like it-- so they weren't surprised when her sat levels initially decreased to the high 80s but they were concerned when Madeleine didn't recover into the 90s. I came downstairs and after conferring with Kirsten and the nurse, we decided to change the trach as there are times when the trach can become plugged and no matter how much you suction, Madeleine won't recover. Again, this frustrated Madeleine and her sat rates dropped a little lower and she failed to recover. We continued to be frustrated and decided to re-position madeleine a number of times expecting that if she could get comfortable, she'd breathe easier and her oxygen levels would recover. We continued doing this for about an hour when we finally discovered that the oxygen supply had been disconnected from the ventilator explaining why Madeleine was satting at a lower level. When we hooked up the oxygen, Madeleine's sat levels recovered and she calmed down. At that point, we realized that Madeleine needed to be suctioned again but we decided that we would let her rest for a while as she'd been agitated for well over 90 minutes and we didn't want to suction again and bother her. This was the regretable mistake we made.
I went to work and Kirsten cleaned up a bit and then jumped in the shower. When she got out of the shower, she could hear the pulse ox and the ventilator alarms going off so she hurried downstairs to see Madeleine again in respiratory distress. She and the nurse suctioned one time and were able to get some secretions out but Madeleine was in severe distress-- her sats were in the 70s and falling and her heart rate was also falling. Not knowing the exact cause, Kirsten dialed 911 and an ambulance picked them up. I received a call at work-- after being in the office less than 5 minutes-- and I ran out the door to meet them at Children's Emergency Room. Once in the ER, the nurses assessed the situation realizing that Madeleine's trach was plugged and immediately replaced her trach. There was concern that Madeleine's pulmonary hypertension was a root cause and/or an infection was related to the distress so they did a full work-up on Madeleine necessitating the admission to Children's and the transfer to the CICU. In the end, all tests came back negative and after a short 36 hour stay, we were released on Christmas Eve with the best Christmas present in the world.
Kirsten and I were a little embarrassed by our sudden admission to the hospital but we learned a great deal from the entire episode and in a strange way, it was very nice to see all of the doctors and nurses that cared for Madeleine for so long. (On a side note, one of her long-time attending doctors walked up to me and said "Man, she wasn't even home for 24 hours?" and walked away smiling.) We were able to talk through all of Madeleine's issues one more time and they really helped us put things in perspective. Additionally, we could show off how much Madeleine had grown in her three week stay at HSC and we now feel much more confident in our ability to handle Madeleine while she's home.
As far as getting her home, we were pleasantly surprised on Christmas Eve when our doctors decided to release her after they were convinced that her admission was simply related to the mechanical eror of her trach getting plugged. When we arrived home on Christmas Eve, the entire transition went much smoother and we had a wonderful Christmas morning that we spent opening gifts and getting used to moving Madeleine and her equipment through the house.
Since Christmas, we've had a wonderful time relaxing at our house-- the kitchen remodel is really paying off-- and we're learning to work with Madeleine's team of nurses. Through this Wednesday, we have full time nursing and then our hours cut back to 18 hours per day. With that schedule, we'll have nursing at our house when we're sleeping as well as when we're at work but will also have some time alone with Madeleine each evening. As you can imagine, we're ecstatic by all of Madeleine's progress and we hope to continue to post the good news-- look for new pictures shortly of both Madeleine as well as the completed kitchen.
Thanks again for everyone's support. We hope your holidays are as relaxing and happy as ours.
Brent and Kirsten
Monday, December 22, 2008
Well...
I know its been over a week since I posted and I don't have a good excuse. I have been busy... and things have been good with Madeleine and....
Well.... I guess I should tell you...
.
.
.
SHE'S HOME!!!!! Yes-- at long last, she's home. She had a great week last week, met all of her milestones at HSC and she's currently in her crib in the nursery. We are working with the first nurse to ensure that she's comfortable with everything related to Madeleine and we're absolutely ecstatic-- the words simply don't convey how happy/excited/all other good feelings we're feeling right now.
It goes without saying that we've already unwrapped the best Christmas gift we can imagine. I'll post plenty more this week when I'm feeling a little less emotionally overwhelmed but Kirsten and I simply can't say thank you enough to all of you that have prayed for us, talked us through difficult times, or simply have cared enough to read our blog. We're blessed with a tremendous support network and we hope you know how much you're appreciated.
In any case, I'm whipped right now and still have a bunch of things I want to do. Have a great night and a relaxing holiday week. Thanks-- look for plenty of pictures and posts in the coming days.
Brent
Well.... I guess I should tell you...
.
.
.
SHE'S HOME!!!!! Yes-- at long last, she's home. She had a great week last week, met all of her milestones at HSC and she's currently in her crib in the nursery. We are working with the first nurse to ensure that she's comfortable with everything related to Madeleine and we're absolutely ecstatic-- the words simply don't convey how happy/excited/all other good feelings we're feeling right now.
It goes without saying that we've already unwrapped the best Christmas gift we can imagine. I'll post plenty more this week when I'm feeling a little less emotionally overwhelmed but Kirsten and I simply can't say thank you enough to all of you that have prayed for us, talked us through difficult times, or simply have cared enough to read our blog. We're blessed with a tremendous support network and we hope you know how much you're appreciated.
In any case, I'm whipped right now and still have a bunch of things I want to do. Have a great night and a relaxing holiday week. Thanks-- look for plenty of pictures and posts in the coming days.
Brent
Saturday, December 13, 2008
Two Videos
At long last, we're getting a chance to post some videos. Kirsten took these two days ago and they are a good representation of how Madeleine spends her days. In the first video, Madeleine is laying in her crib at HSC. We haven't taken in our mobile for her to use so a crafty nurse made an improvised version by taking trach tie material and tying it across the top of the crib. In the video, Mr. Octopus (not sure why the Mr. is necessary but that's what we call him) is dangling over Madeleine and Madeleine is alternating between sucking on her right hand and swatting at Mr. Octopus. What you don't see is that when her arms get tired, she's developing a pretty firm roundhouse kick with her right leg (only her right leg) and she catches Mr. Octopus unaware every once in a while.
In the second video, HSC's speech therapist is holding Madeleine up and is trying out a new toy-- a vibrating teething ring. Madeleine loves oral stimulation and we thought she'd love this toy. She does seem to like it but she's still not 100% sure about it. In the video, she's pretty infatuated with the camera. This video shows you both how far Madeleine has come in the past few months but also shows how much work we have to do. At her age, she' understandably delayed on issues related to muscular/skeletal but cognitively she's doing pretty well. She smiles all the time-- the smile in the second video is her normal reaction whenever you play with her-- and she's really into toys and interacting with others. She's making noises with her mouth, blowing bubbles, and we're just starting to try out a voice box that goes on her vent line. The trach makes it difficult for her to vocalize so we're excited to use the voice box to encourage her to vocalize.
That's all-- no medical updates. Just some cool videos of our daughter. We're still hopeful of getting her home next week and will continue to post pictures and videos. Have a great weekend.
In the second video, HSC's speech therapist is holding Madeleine up and is trying out a new toy-- a vibrating teething ring. Madeleine loves oral stimulation and we thought she'd love this toy. She does seem to like it but she's still not 100% sure about it. In the video, she's pretty infatuated with the camera. This video shows you both how far Madeleine has come in the past few months but also shows how much work we have to do. At her age, she' understandably delayed on issues related to muscular/skeletal but cognitively she's doing pretty well. She smiles all the time-- the smile in the second video is her normal reaction whenever you play with her-- and she's really into toys and interacting with others. She's making noises with her mouth, blowing bubbles, and we're just starting to try out a voice box that goes on her vent line. The trach makes it difficult for her to vocalize so we're excited to use the voice box to encourage her to vocalize.
That's all-- no medical updates. Just some cool videos of our daughter. We're still hopeful of getting her home next week and will continue to post pictures and videos. Have a great weekend.
Friday, December 12, 2008
Still at HSC
We're still at HSC but things are going well. Madeleine continues to amaze everyone with her smile and good cheer and we're slowly figuring out the intestinal issues. The doctors believe that they identified the cause of the loose stool earlier in the week as they explained that Madeleine's stool was positive for C. difficile (C-Dif) bacteria. This sounds bad but was actually a relief as it is a common problem afflicting babies coming off of anti-biotics. In a healthy body, c-dif and other bacteria serve a positive role in aiding the body in the digestion process. When a baby is placed on antibiotics for an infection, the majority of these bacteria can be killed and for some reason, c-dif can come back stronger than any other bacteria once the anti-biotics are stopped. When this happens, the equilibrium of various bacteria in the intestines is lost and a high c-dif concentration can lead to diahrea. I'm somewhat making this explantion up so I'll defer to my good friend Will, a GI specialist, as he eads the blog so he may offer a much more accurate explanation of how all this works in the comment section.
The solution is a lot simpler than explaining the condition. The doctors simply started Madeleine on an anti-biotic that targets c-dif thereby enabling the other bacteria to re-establish themselves in the intestines and re-establishing the equilibrium for healthy stool. We're already seeing progress in the consistency of the stool and, if all goes according to plan, there's a chance we'll be discharged next week. We're not getting our hopes up as we know that this timeline could be pushed back. Its much easier to accept the delay right now as we're seeing Madeleine make tremendous progress at HSC and we only want to bring her home once all of her health issues are resolved.
In any case, that's all for right now. We'll try posting some videos this weekend that Kirsten took last night at HSC. I think you'll be amazed at the progress that Madeleine has made. She is absolutely amazing and is a lot of fun to be around right now.
Have a great weekend!
The solution is a lot simpler than explaining the condition. The doctors simply started Madeleine on an anti-biotic that targets c-dif thereby enabling the other bacteria to re-establish themselves in the intestines and re-establishing the equilibrium for healthy stool. We're already seeing progress in the consistency of the stool and, if all goes according to plan, there's a chance we'll be discharged next week. We're not getting our hopes up as we know that this timeline could be pushed back. Its much easier to accept the delay right now as we're seeing Madeleine make tremendous progress at HSC and we only want to bring her home once all of her health issues are resolved.
In any case, that's all for right now. We'll try posting some videos this weekend that Kirsten took last night at HSC. I think you'll be amazed at the progress that Madeleine has made. She is absolutely amazing and is a lot of fun to be around right now.
Have a great weekend!
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