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!
Wednesday, December 10, 2008
Groundhog Day
Madeleine's return home has hit another delay. We don't know how long it will be-- could be tomorrow or could be much longer. Right now, we're trying to determine what is going on. Yesterday morning, Madeleine's colostomy bag output was greatly increased and also watery and discolored. The doctors decided to cut back the rate on her feed. Previously, she was getting 35 mls over an 18 hour period. They didn't cut the daily amount of food-- they just decided to spread it out over 24 hours to a lower hourly rate. That seems to have helped as her output has decreased and the coloring has improved though the stool is still quite wet. Given the concern over possible dehydration resulting from diarhea or dumping, the doctors are being cautious and have just put a delay on. Since no major changes have been made, they haven't told us that they want another week-- at least not yet-- but they're looking at everything right now to figure out what is going on. The major concern-- as always-- is another infection. Madeleine had a slight fever last night so they took blood but the tests so far have all come back negative. If everything continues to be negative and the stool continues to improve, tomorrow is a possibility. If an infection is identified, we'll be delayed a longer time.
That's all for now. We're obviously disappointed-- extremely-- but we'll get through this. I'll post once we know more. Also-- I'll do my best to get pictures and video posted. Thanks again for everyone's support.
That's all for now. We're obviously disappointed-- extremely-- but we'll get through this. I'll post once we know more. Also-- I'll do my best to get pictures and video posted. Thanks again for everyone's support.
Monday, December 8, 2008
Today is Day 6
The plan when we transferred to HSC was to leave after 7 full days with no medical interventions. Today is day 6 with no interventions. For those keeping score at home, that means that Madeleine COULD be eligible to come home as early as Wednesday barring any last minute changes. We're not expecting any changes but given Madeleine's history of last minute curve balls, we're not getting our hopes to high. (I'm completely lying-- we're ecstatic but trying not to appear so.)
Regardless of her discharge date, the best news is that Madeleine is going great and is by far the healthiest that she's been in her life. (this is her dad, not her doctors talking but still...) Here's my evidence:
- She's extremely alert-- she's batting at toys, following people throughout the room at HSC, and is generally engaged and active.
- She feels stronger-- for the first time in her life, Madeleine felt this weekend like her core body was strong and didn't need support. Kirsten and I even worked with Madeleine on sitting up on her own. She still has a loooooooooooooooong ways to go but she's made major strides.
- She's growing-- she weighed in yesterday at 9lbs 5 oz-- when she transferred last week, she was under 9 lbs. This is the most important health factor and we're praying that it continues moving in this direction. Growing solves most of her health issues.
- She's laughing all the time-- when she's picked up, when she wakes up, when you say something funny to her, when you smile at her, when you bounce her... yup-- all the time. I can't tell you how awesome it is to see her smile after all of the difficulties she's been through.
- Most importantly: She ADORES her parents. We know it won't last but its very clear that Madeleine knows us and loves to be around us. We simply can't wait to get her home.
We're obviously failing at not getting too excited but we're confident that Madeleine is doing well and even if we have a set back, we don't think it will be a major one. We're spending the night at HSC tonight in an apartment with Madeleine as a trial run with the vent. We'll be back home tomorrow night cleaning up and getting the house ready for Madeleine's return on Wednesday.
Thanks again for everyone's support. I'll try to post pictures on Wednesday of Madeleine as well as of the kitchen-- all major work is complete today and it looks great!
Regardless of her discharge date, the best news is that Madeleine is going great and is by far the healthiest that she's been in her life. (this is her dad, not her doctors talking but still...) Here's my evidence:
- She's extremely alert-- she's batting at toys, following people throughout the room at HSC, and is generally engaged and active.
- She feels stronger-- for the first time in her life, Madeleine felt this weekend like her core body was strong and didn't need support. Kirsten and I even worked with Madeleine on sitting up on her own. She still has a loooooooooooooooong ways to go but she's made major strides.
- She's growing-- she weighed in yesterday at 9lbs 5 oz-- when she transferred last week, she was under 9 lbs. This is the most important health factor and we're praying that it continues moving in this direction. Growing solves most of her health issues.
- She's laughing all the time-- when she's picked up, when she wakes up, when you say something funny to her, when you smile at her, when you bounce her... yup-- all the time. I can't tell you how awesome it is to see her smile after all of the difficulties she's been through.
- Most importantly: She ADORES her parents. We know it won't last but its very clear that Madeleine knows us and loves to be around us. We simply can't wait to get her home.
We're obviously failing at not getting too excited but we're confident that Madeleine is doing well and even if we have a set back, we don't think it will be a major one. We're spending the night at HSC tonight in an apartment with Madeleine as a trial run with the vent. We'll be back home tomorrow night cleaning up and getting the house ready for Madeleine's return on Wednesday.
Thanks again for everyone's support. I'll try to post pictures on Wednesday of Madeleine as well as of the kitchen-- all major work is complete today and it looks great!
Friday, December 5, 2008
Crazy Comparison
Over the past few days, we've had a number of discussions with doctors regarding Madeleine's medical conditions and her long-term outlook. We haven't learned anything new: we know that Madeleine has some serious medical issues to address-- most notably her pulmonary hypertension-- and we have reason to believe that if she grows and develops, these medical issues will be resolved. However, the conversations have underscored just how fragile Madeleine is and re-emphasizes how lucky we are and how careful we have to be in the future when we bring Madeleine home. We're obviously elated that Madeleine is doing so well but its a difficult reality to accept.
The title "crazy comparison" comes from the fact that I spent much of the day holding Madeleine while talking with doctors and then reflecting on these various conversations. By the time Kirsten showed up yesterday evening at HSC, I was really focused on thinking through all of the various medical challenges when I handed Madeleine over to her mom. I continued reflecting as Kirsten began playing with Madeleine when I was suddenly jarred out of my thoughts as I watched Kirsten bounce Madeleine up and down. I was shocked to see my daughter-- the same daughter that I'd held all day and fretted over-- was nearly squealing in joy with her mouth wide open in a smile and her hand shoved into her mouth (Madeleine was in prime hand sucking mode yesterday-- its her version of a pacifier...) Kirsten was smiling as she bounced Madeleine up and down on her lap and then swung her from side to side. I've been so busy working on our kitchen that I haven't spent much time at the hospital the last few weeks and I learned that this is a new routine that Kirsten and Madeleine have developed together-- they both looked like they were having a great time.
The scene was extremely moving for me as it has been quite some time since I've seen my daughter and wife both this happy. I guess I'm writing this out right now as Kirsten and I are preparing to bring Madeleine home in the near-term (possibly next week but we're not getting our hopes up.) On the one hand, we will serve as Madeleine's primary health care providers and must be vigilant to ensure that Madeleine's health challenges are addressed. On the other hand, we simply want to be parents. I want to walk in from work, throuw my briefcase in a corner, rip off my tie, and play with my daughter without letting her health issues complicate our play-time. Obviously, we can play both roles--- its just a complicated situation that we'll need to learn all over again.
That's all for now. Madeleine continues to do well at HSC. As we reported yesterday, the goal is to get to 7 consecutive days with no medical interventions needed. For those keeping score at home, today is day 3 unless something changes. I've already promised everyone that "Charlie Brown isn't lining up to kick the football again" so I'm not putting in writing a date for discharge until I'm buckling Madeleine into her car seat.
Have a great weekend-- Kirsten and I will do our best to take pictures and get them posted soon.
The title "crazy comparison" comes from the fact that I spent much of the day holding Madeleine while talking with doctors and then reflecting on these various conversations. By the time Kirsten showed up yesterday evening at HSC, I was really focused on thinking through all of the various medical challenges when I handed Madeleine over to her mom. I continued reflecting as Kirsten began playing with Madeleine when I was suddenly jarred out of my thoughts as I watched Kirsten bounce Madeleine up and down. I was shocked to see my daughter-- the same daughter that I'd held all day and fretted over-- was nearly squealing in joy with her mouth wide open in a smile and her hand shoved into her mouth (Madeleine was in prime hand sucking mode yesterday-- its her version of a pacifier...) Kirsten was smiling as she bounced Madeleine up and down on her lap and then swung her from side to side. I've been so busy working on our kitchen that I haven't spent much time at the hospital the last few weeks and I learned that this is a new routine that Kirsten and Madeleine have developed together-- they both looked like they were having a great time.
The scene was extremely moving for me as it has been quite some time since I've seen my daughter and wife both this happy. I guess I'm writing this out right now as Kirsten and I are preparing to bring Madeleine home in the near-term (possibly next week but we're not getting our hopes up.) On the one hand, we will serve as Madeleine's primary health care providers and must be vigilant to ensure that Madeleine's health challenges are addressed. On the other hand, we simply want to be parents. I want to walk in from work, throuw my briefcase in a corner, rip off my tie, and play with my daughter without letting her health issues complicate our play-time. Obviously, we can play both roles--- its just a complicated situation that we'll need to learn all over again.
That's all for now. Madeleine continues to do well at HSC. As we reported yesterday, the goal is to get to 7 consecutive days with no medical interventions needed. For those keeping score at home, today is day 3 unless something changes. I've already promised everyone that "Charlie Brown isn't lining up to kick the football again" so I'm not putting in writing a date for discharge until I'm buckling Madeleine into her car seat.
Have a great weekend-- Kirsten and I will do our best to take pictures and get them posted soon.
Thursday, December 4, 2008
Back to HSC Today
After much debate, we've agreed to transfer Madeleine back to HSC for a planned short stay. We're not setting any dates as that just sets us up for failure (I felt like Charlie Brown kicking the football yesterday.). However, the "medical plan" is to ensure that Madeleine can spend a week at HSC without any significant medical intervention. If this occurs, everyone would be more comfortable sending her home.
There are positives and negatives associated with any decision we make. The positives of going to HSC are focused on ensuring that Madeleine's medical issues are stable and we won't need to rush back to the hospital. The downside of HSC is that we run a higher risk of getting an infection at HSC than we do at home.
When we do come home, we run the risk of having to go back to the hospital for additional changes and we don't want to go through any additional admissions. That's the major downside we're trying to avoid by going to HSC. There are also numerous positives associated with bringing her home and that's why we're anxious.
Two issues became clear to Kirsten and I yesterday during our discussions with the hospital. The first issue is that we're no longer going to make plans for bringing Madeleine home until we're sure that the entire medical team is in agreement. We made it clear to the staff at Children's how upsetting and frustrating it is when the "plan" changes so frequently. It is emotionally draining and frankly irresponsible to get our hopes up and then change the plan. Obviously the doctors can't prevent Madeleine's health issues from impacting the decision to go home but when the plan changes while Madeleine remains healthy is simply wrong.
We also learned yesterday that the attending doctor's at Children's differ on the medical plan for a child of Madeleine's complexity. As a team, we have agreed that in spite of Madeleine's multiple health challenges, it is important for us to bring Madeleine home as we feel this is the best approach to address her long-term medical issues. While this has been the stated goals of the "medical team" (including Kirsten and I) other attending doctors disagree with this approach and while they haven't told us this directly, these differing beliefs have obviously impacted decisions regarding Madeleine's care plan.
In the end, we ultimately agreed with the decision to transfer Madeleine to HSC. However, we were disappointed in the manner in which the decision was made (constant changes) and we also disagreed with the concerns centering around long-term institutionalization for Madeleine. Its a complicated and frustrating situation and we hope that by airing our concerns and frustrations we can help to improve communcation and medical decision-making in the CICU.
Lest I forget, the most important issue in this whole situation is Madeleine's health and that is going fantastic. While we were talking with the doctors yesterday in Madeleine's room, Madeleine was layoing in bed alternately staring at her toys, smiling and wiggling all around. She's doing great and we can't wait to get her home and watch her grow.
That's all for now. Thanks as always for your interest and support.
Brent and Kirsten
There are positives and negatives associated with any decision we make. The positives of going to HSC are focused on ensuring that Madeleine's medical issues are stable and we won't need to rush back to the hospital. The downside of HSC is that we run a higher risk of getting an infection at HSC than we do at home.
When we do come home, we run the risk of having to go back to the hospital for additional changes and we don't want to go through any additional admissions. That's the major downside we're trying to avoid by going to HSC. There are also numerous positives associated with bringing her home and that's why we're anxious.
Two issues became clear to Kirsten and I yesterday during our discussions with the hospital. The first issue is that we're no longer going to make plans for bringing Madeleine home until we're sure that the entire medical team is in agreement. We made it clear to the staff at Children's how upsetting and frustrating it is when the "plan" changes so frequently. It is emotionally draining and frankly irresponsible to get our hopes up and then change the plan. Obviously the doctors can't prevent Madeleine's health issues from impacting the decision to go home but when the plan changes while Madeleine remains healthy is simply wrong.
We also learned yesterday that the attending doctor's at Children's differ on the medical plan for a child of Madeleine's complexity. As a team, we have agreed that in spite of Madeleine's multiple health challenges, it is important for us to bring Madeleine home as we feel this is the best approach to address her long-term medical issues. While this has been the stated goals of the "medical team" (including Kirsten and I) other attending doctors disagree with this approach and while they haven't told us this directly, these differing beliefs have obviously impacted decisions regarding Madeleine's care plan.
In the end, we ultimately agreed with the decision to transfer Madeleine to HSC. However, we were disappointed in the manner in which the decision was made (constant changes) and we also disagreed with the concerns centering around long-term institutionalization for Madeleine. Its a complicated and frustrating situation and we hope that by airing our concerns and frustrations we can help to improve communcation and medical decision-making in the CICU.
Lest I forget, the most important issue in this whole situation is Madeleine's health and that is going fantastic. While we were talking with the doctors yesterday in Madeleine's room, Madeleine was layoing in bed alternately staring at her toys, smiling and wiggling all around. She's doing great and we can't wait to get her home and watch her grow.
That's all for now. Thanks as always for your interest and support.
Brent and Kirsten
Wednesday, December 3, 2008
It's been a week?
Sorry for the lack of posts-- didn't realize it has been a week since I last posted. Life has been hectic between visiting with Madeleine in the hospital and working to complete the kitchen remodel. The remodel work is much less complicated than Madeleine so I'll cover that issue first. I'm glad to report that all appliances will be installed and the kitchen will be in full working condition today. We'll still have some tilework to do-- backsplash and some floor repair and we'll have a little bit of trim work and finishing up of things to do but the lion's share of the work will be completed by today and that feels great. We've been bad about pictures but will get up new ones soon. (may take a few more days.)
There is also some good news to report in regard to Madeleine-- she continues to do well, is putting on weight back on-- she's just getting back to 9 lbs-- and we're close to getting her home. While this is great news, Kirsten and I are quite frustrated with the hospital as we've gotten mixed signals regarding Madeleine's next steps. When we first came back to Children's from the rehab hospital (HSC), we hoped to return quickly to HSC and then come home as we had laid out a plan to ensure that Madeleine remained stable. However, Madeleine wasn't able to return quickly as the virus took a while to resolve and then she ran into the Thanksgiving holiday weekend-- transferring wasn't an option during the holiday weekend as staff at both facilities (Children's and HSC) were low. Additionally, HSC hasn't had a bed available this week for Madeleine so transferring earlier this week hasn't been an option. We understood the reasons for delaying our return to HSC and were pleasantly surprised to see Madeleine make significant progress at Children's. In the past week, she has been successfully weaned from a respiratory rate on the vent meaning that she is breathing entirely on her own. She still is attached to a ventilator for pressure support (when she breathes, it is easier for her to get a breath) and she gets a small amount of oxygen but that is all. Our plan is to remain at this level of support for the time being to ensure that Madeleine's lungs don't develop problems and also making it easier for Madeleine to breathe, thereby enabling weight gain. (less calories burned breathing = more weight gain.) Madeleine's also become much more aware as she's been weaned from atavan and
This is all great news and Kirsten and I are excited but we're also extremely frustrated with the level of communication we've received from the hospital. By and large, we've been impressed with the level of care that patients and families receive at Children's hospital. We're confident knowing that Madeleine's life has been saved a number of times during her short life and we simply can't thank them enough. That being said, the past few days has proven extremely frustrating as we've received numerous mixed signals regarding the next step in Madeleine's care. Some doctors suggested late last week that going home rather than going back to HSC made more sense. These doctors reasoned that Madeleine has been stable for over a week in the hospital, she has been successfully weaned from the respiratory support, and frankly questioned what benefit could be gained by going to HSC. They also raised the concern of infection that is always evident when one is institutionalized. With these comments in mind, we asked about the option of taking Madeleine home and reached agreement that this would be the path moving forward. For the past two days, we've made plans to bring Madeleine home as early as tomorrow morning and we've worked to coordinate the kitchen remodeling, our work schedules, the nursing schedules, as well as medical supplies to make it possible to bring Madeleine home tomorrow. (I didn't have time to post this information and now I'm somewhat glad.)
Today, we learned that during rounds, the doctors decided to send Madeleine to HSC and have set a date of next Wednesday for us to bring Madeleine home. We haven't gotten a medical justification for this decision and for obvious reasons, Kirsten and I are confused and angry. We're confused as this decision doesn't appear to have any medical justification and seems weird to transfer someone for such a short period of time. We're angry as we feel that Children's has presented us with contradictory decisions, has failed to include us in the medical conversation, and we feel like we're getting put through an emotional roller coaster with little concern for our role in Madeleine's care. Needless to say, Kirsten and I are anxious to voice these concerns (we're not the shy type) and we intend to discuss both our concerns regarding Madeleine's care plan as well as Children's decision making progress before we consent to the decision to move her to HSC.
I expect we'll have a team meeting with Madeleine's doctors this afternoon and we will work to separate our emotions surrounding the decision making process and our desire to bring Madeleine home apart from the medical decision that needs to be made. That being said-- I expect this to be a difficult conversation for all involved parties.
That's all for now. The important part is that Madeleine is doing well and we expect to get her home soon. We expect to resolve our concerns shortly and hope to keep in perspective the great care that Madeleine has received throughout her stay at Children's. Thanks for reading.
Brent
There is also some good news to report in regard to Madeleine-- she continues to do well, is putting on weight back on-- she's just getting back to 9 lbs-- and we're close to getting her home. While this is great news, Kirsten and I are quite frustrated with the hospital as we've gotten mixed signals regarding Madeleine's next steps. When we first came back to Children's from the rehab hospital (HSC), we hoped to return quickly to HSC and then come home as we had laid out a plan to ensure that Madeleine remained stable. However, Madeleine wasn't able to return quickly as the virus took a while to resolve and then she ran into the Thanksgiving holiday weekend-- transferring wasn't an option during the holiday weekend as staff at both facilities (Children's and HSC) were low. Additionally, HSC hasn't had a bed available this week for Madeleine so transferring earlier this week hasn't been an option. We understood the reasons for delaying our return to HSC and were pleasantly surprised to see Madeleine make significant progress at Children's. In the past week, she has been successfully weaned from a respiratory rate on the vent meaning that she is breathing entirely on her own. She still is attached to a ventilator for pressure support (when she breathes, it is easier for her to get a breath) and she gets a small amount of oxygen but that is all. Our plan is to remain at this level of support for the time being to ensure that Madeleine's lungs don't develop problems and also making it easier for Madeleine to breathe, thereby enabling weight gain. (less calories burned breathing = more weight gain.) Madeleine's also become much more aware as she's been weaned from atavan and
This is all great news and Kirsten and I are excited but we're also extremely frustrated with the level of communication we've received from the hospital. By and large, we've been impressed with the level of care that patients and families receive at Children's hospital. We're confident knowing that Madeleine's life has been saved a number of times during her short life and we simply can't thank them enough. That being said, the past few days has proven extremely frustrating as we've received numerous mixed signals regarding the next step in Madeleine's care. Some doctors suggested late last week that going home rather than going back to HSC made more sense. These doctors reasoned that Madeleine has been stable for over a week in the hospital, she has been successfully weaned from the respiratory support, and frankly questioned what benefit could be gained by going to HSC. They also raised the concern of infection that is always evident when one is institutionalized. With these comments in mind, we asked about the option of taking Madeleine home and reached agreement that this would be the path moving forward. For the past two days, we've made plans to bring Madeleine home as early as tomorrow morning and we've worked to coordinate the kitchen remodeling, our work schedules, the nursing schedules, as well as medical supplies to make it possible to bring Madeleine home tomorrow. (I didn't have time to post this information and now I'm somewhat glad.)
Today, we learned that during rounds, the doctors decided to send Madeleine to HSC and have set a date of next Wednesday for us to bring Madeleine home. We haven't gotten a medical justification for this decision and for obvious reasons, Kirsten and I are confused and angry. We're confused as this decision doesn't appear to have any medical justification and seems weird to transfer someone for such a short period of time. We're angry as we feel that Children's has presented us with contradictory decisions, has failed to include us in the medical conversation, and we feel like we're getting put through an emotional roller coaster with little concern for our role in Madeleine's care. Needless to say, Kirsten and I are anxious to voice these concerns (we're not the shy type) and we intend to discuss both our concerns regarding Madeleine's care plan as well as Children's decision making progress before we consent to the decision to move her to HSC.
I expect we'll have a team meeting with Madeleine's doctors this afternoon and we will work to separate our emotions surrounding the decision making process and our desire to bring Madeleine home apart from the medical decision that needs to be made. That being said-- I expect this to be a difficult conversation for all involved parties.
That's all for now. The important part is that Madeleine is doing well and we expect to get her home soon. We expect to resolve our concerns shortly and hope to keep in perspective the great care that Madeleine has received throughout her stay at Children's. Thanks for reading.
Brent
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