Remember when you learned in sixth grade biology that all mammals have certain characteristics including live childbirth, hair, and warm blood? I've always sworn that my wife violates the third principle as I don't think she's ever comfortable until the temperature gauge hits about 92 degrees. I've also always heard about how babies are always cold and I assumed that Madeleine would take after her cold blooded mother. However, the past two days in DC have been scorching hot and it has been patently clear that Madeleine takes after her sweaty father who realizes that life is best in the 60s while occasionally enjoying temperatures in the 70s. Even Kirsten was forced to recognize this reality today when we came home and our nurse was taking wet washclothes and wiping down Madeleine and she smiled with glee each time a fresh, wet washcloth hit her forehead.
As you might be able to tell, things are going extremely well here in the Bushey household. I started a new job at the Department of Homeland Security-- I'm working in the IT Department of the Immigration and Customs Enforcement (DHS ICE) and am supporting a program called "Secure Communities." Its all still very new but I'm extremely excited by the switch in jobs and thoroughly enjoyed my first day in the office.
As far as Madeleine is concerned, she continues to grow and we hope to have an updated weight at the end of the week when we meet with GI. We're meeting with a new doctor on Friday-- actually she's a nurse practitioner-- and her specialty is feeding tubes. We plan on discussing Madeleine's calorie intake and also will discuss the plans for the surgery scheduled for Friday, May 15th. We don't expect any major changes/surprises and rather hope that we'll see continued progress and will make plans for the future. Other than that, Madeleine continues to be extremely happy and amazes us with her growth and tenacity. We're seeing her core strength continue to increase and her ability to roll over, sit up on her own, and frustrate her parents whenever we want to change her clothes increase every day. In short-- its a good time to be a parent.
That's about it. I hope things are going as well for everyone out there as they are for us. Thanks again for your support and interest in our blog.
Monday, April 27, 2009
Thursday, April 23, 2009
Successful Surgery
That's right-- surgery was successful today... on our dog Grady's leg. Gotcha! Yes-- our loving and extremely dumb cocker spaniel tore the cruciate ligament in his rear leg (in humans, we call this, the ACL) and he just completed successful surgery. A number of our friends offered cheaper alternatives but we decided that we wanted Grady around... hope we don't regret the decision.
Madeleine, on the other hand, continues to do great. Kirsten worked last last night so I was able to play with her by myself all evening. It was weird since it is very rare that we're home alone-- when Kirsten isn't around we usually have a nurse or other visitors. I loved it since I usually defer to others and I had a great time. The time also drove home the amazing love that a child has for its parents. I guess I've always focused on how my feelings toward her have been so life changing-- lots of other parents have asked rhetorically "did you ever think you could love something so much?" While this love was apparent, it really dawned on me last night how much Madeleine trusts and loves both Kirsten and I. I'm not bragging-- kids usually adore their parents (at least when they're young) but its taken a while to develop that mutual bond since Madeleine has had so many different care givers in her life. Obviously, Kirsten and I are the two constants but we're now just beginning to see her dependence on us-- she recognizes our voices immediately when we walk in the door and its apparent that she prefers us to hold her. (much like other kids) In any case, she continues to grow (we hope to have a new weight for you soon) and her muscle development continues to improve. She's starting to sit upright with very little support and is playing non-stop. Since posting the survey regarding how many times she will pull out the tube, we've had three close calls but so far, no trips to the hospital. (Yes-- I realize I just jinxed myself.)
That's all for now. I believe that new pictures have been posted but can't access Picasa right now-- long story. Hope to have new pics and maybe even a video in the coming days.
Brent
Madeleine, on the other hand, continues to do great. Kirsten worked last last night so I was able to play with her by myself all evening. It was weird since it is very rare that we're home alone-- when Kirsten isn't around we usually have a nurse or other visitors. I loved it since I usually defer to others and I had a great time. The time also drove home the amazing love that a child has for its parents. I guess I've always focused on how my feelings toward her have been so life changing-- lots of other parents have asked rhetorically "did you ever think you could love something so much?" While this love was apparent, it really dawned on me last night how much Madeleine trusts and loves both Kirsten and I. I'm not bragging-- kids usually adore their parents (at least when they're young) but its taken a while to develop that mutual bond since Madeleine has had so many different care givers in her life. Obviously, Kirsten and I are the two constants but we're now just beginning to see her dependence on us-- she recognizes our voices immediately when we walk in the door and its apparent that she prefers us to hold her. (much like other kids) In any case, she continues to grow (we hope to have a new weight for you soon) and her muscle development continues to improve. She's starting to sit upright with very little support and is playing non-stop. Since posting the survey regarding how many times she will pull out the tube, we've had three close calls but so far, no trips to the hospital. (Yes-- I realize I just jinxed myself.)
That's all for now. I believe that new pictures have been posted but can't access Picasa right now-- long story. Hope to have new pics and maybe even a video in the coming days.
Brent
Friday, April 17, 2009
New Poll
Check out the poll on the left-- anyone care to guess on how many times Madeleine will pull out her feeding tube before it is removed on May 15th? My vote is 3+... sigh.
Going Great
As you can tell from this picture, Madeleine continues to be happy and is doing great. In fact, you can't tell from the picture but her hood is up because Kirsten brought her outside yesterday to surprise me when I got home from work. She was sitting in her chair playing when I walked up. Not a bad way to come home from a day of work, eh? As I promised weeks ago (yes-- I've been chided for not blogging/posting pictures and am trying to get better), I've posted a number of new pictures to our picasa site. Check in this folder for new pictures from Kirsten's Uncle Joel's visit. I've created a new folder for April and hope to add pictures from my parent's visit last weekend. We'll also upload some pictures and likely even some video this weekend as Kirsten's parents are in town. The pictures tell most of the stories about Madeleine so check back for lots of cuteness.As far as medical updates go, we have a great report for you. Kirsten and I took Madeleine to a doctor's appointment with her surgeon yesterday. Dr. Gengalewski (I love Polish names!) is a great surgeon and knows Madeleine from her intestinal surgeries a year ago. We reviewed Madeleine's progress and Dr. Gengalewski agreed that it is high time to get rid of the feeding tube in Madeleine's nose. She also agreed with us that it makes sense to insert a PEG feeding tube directly into Madeleine's stomach and also to reinforce the valve connecting the stomach with the esophagus. (This is called a Nissen or Nissen fundoplication procedure.) The benefit of doing the Nissen is that it will protect Madeleine's airway by preventing her from refluxing food back into her esophagus. The surgery will also benefit Madeleine by removing the feeding tube from her airway, thereby reducing irritation and secrections caused by the tube's presence. In short, we can expect to see even better GI and pulmonary performance once the surgery and recovery is complete. The other obvious benefit of the surgery is that Madeleine won't be able to pull out the PEG (or will have to pull MUCH harder). This is great for us since right now, we have to take her to the hospital every time she yanks on the feeding tube and dislodges it. We love Children's hospital but I'd prefer to not be on a first name basis with EVERYONE working in the X-Ray department. :)
As with any surgery, there are some important risks. Most serious is Madeleine's pulmonary hypertension and the possibility that the surgery could trigger a crisis. The doctor's don't think this is likely but PH is something that they never take lightly. Additionally, the recovery period can vary greatly depending on a ton of different factors. If all goes well, we're hoping for a short 3-5 days in the hospital. Right now, we're targeting May 15 for the surgery date and we'll have a number of doctor visits before hand to ensure that Madeleine's whole team of doctors agrees that she's ready for this surgery. We're pretty confident that everyone will be in agreement but we're not taking anything lightly when it comes to Madeleine's surgery.
As you might be able to tell, Kirsten and I are a bit worried but we're also excited because this is a big step forward. Once Madeleine has recovered from the surgery, we expect her growth to continue to improve and we think that the PEG will make everyone's lives much easier. Additionally, with the timing of the surgery in mid-May, we'll likely still be on target to start weaning the ventilator at some point in June-- likely late June. We still have tons of hurdles to clear but we feel like yesterday was a great step forward.
That's all for now. Please check back soon for further blog updates and pictures.
Thursday, April 2, 2009
Lots of Good Updates
Welcome back after a two-week hiatus. Please check back for more-- I'll have pics posted soon.
Madeleine and I visited with a number of doctor's yesterday and we got some really great news. In no particular order, we learned:
- Opthamologist: Madeleine has no serious eye problems. Children with Down's Syndrome commonly have problems with lazy eyes, crossed eyes, and other more serious issues but Madeleine doesn't display any of these issues. Furthermore, she didn't have any nearsightedness and the doctors only identified small farsightedness and a slight astigmatism. Neither issue is affecting her at this time and it is fully possible that she'll grow out of it so we don't have any plans for future eye visits for TWO YEARS! I can't describe how strange it was to hear the doctor tell me that she didn't need to see us for two years. It was pretty great.
- Weight: She weighed in at 15 lbs. This was a huge breakthrough as we had been struggling to reach 14 lbs. Honestly, we're a little skeptical that the scale was accurate but regardless, we know that Madeleine is gaining weight.
- Pulmonary: Madeleine is fighting a cold right now-- she may have gotten it from her Dad-- and was needing a slightly higher level of oxygen support. This is slightly concerning and we'll have to monitor her closely for the next few days. Still, the doctors were encouraged by her weight gain and overall demeanor in the office and agreed that we can just hold the course. We are going to meet with them again in two months and if all goes well, we'll likely consider weaning her from the ventilator during the day. Typically, patients start with two hours off the vent and then increase a half hour every week. Our goal is to get her off the ventilator during the day but back on it when she is sleeping. This would make moving her around much easier but would also ensure that we could hook her up to a ventilator easily if she was in distress and/or needed additional support.
- Cardiology: Perhaps the best news of the day came from Cardiology when the doctors confirmed that Madeleine's pulmonary hypertension is unchanged and is being medically managed. Normal right side heart (pulmonary) pressures should be 25% of the left side pressures (systemic pressure) and Madeleine's pressures were at 30%. When Madeleine was diagnosed with pulmonary hypertension, her percentage was above 80% so we've come down a long ways. Given her continued development and weight gain, our cardiologist is going to slowly start weaning one of her PH drugs. Our ultimate goal as her lungs develop is to wean from all PH drugs. We don't know if this will be possible but we're encouraged now that we are at least confident enough to try weaning.
- GI: We didn't meet with a GI doctor but our cardiologist cleared us to discuss removing the nasal feeding tube and installing a direct port through her abdomen. This is great news for a number of reasons. First: the nasal tube is a pain as we have to go back to the hospital whenever Madeleine pulls it out. Second, it poses a risk as it can easily be dislodged without us knowing and could pour food into her lungs-- unlikely but still possible. The direct port sounds bad but from a lifestyle perspective it is much easier to deal with. Eventually, Madeleine will eat by mouth like anyone else but given her low muscle tone issues coupled with her compromised lungs and we're likely a year away from seriously considering mouth feedings. Since it will be that long, the best option is the direct port. The direct port requires a surgical procedure and anathesia. We've avoided this surgery for quite some time as PH patients can have very bad reactions to anasthesia. We're very encouraged that our cardiologist feels confident enough to allow this surgery as it shows how far Madeleine has come in her development. In another post, I'll talk about the different options that the GI doctors will consider when determining what type of port to install.
- Physical development/benchmarking: This is the area where I've been concerned as it is very hard to compare Madeleine against a standard set of development. Since my last post, I've gotten a number of links to various sources of information but there isn't a link for babies that have Down Syndrome, prematurity, GI problems, and Pulmonary hypertension (among other health issues). Simply put, Madeleine is one unique little kid. I was very concerned about how Madeleine has been doing and I'm ecstatic to report that my fears are largely unfounded. In contrast, the doctors were amazed at the progress that Madeleine has made in the last three months. They were glad to see her weight gain and furthermore, were glad to see how much her core body strength has improved (I'll provide another post in the near future that lists out all of Madeleine's new "tricks"). Furthermore, they charted Madeleine' s weight gain against the baby development growth charts and drew the following conclusions:
1) On the "normal" growth chart, Madeleine is still below the 3rd percentile in development but the slope of her growth line is much steeper than the normal curve. For those of you that failed high school geometry (or its been too long to remember) that means that shes catching up to the curve. Even better, when we plotted her weight on the chart adjusted for female children with Down's Syndrome, she's at to 20% percentile! This was significant for two reasons: first, it underscored to me that girl's with down syndrome are actually much smaller than traditional babies-- I didn't really grasp this until yesterday. Additionally, it means that Madeleine is catching up extremely rapidly in the Down Syndrome category. In fact, the most outrageous comment of the day came from Dr. Bloom-- our do everything/quarterback/complex care doctor-- when she suggested that our GI doctors may choose to DECREASE Madeleine's caloric intake so that she doesn't grow too fast! Needless to say, I was near to tears a number of times yesterday.
To summarize yesterday's visit: Madeleine has good eyesight, is gaining weight, her heart conditions are stable and improving, and we now have a plan in place to rid ourselves of the nasal feeding tube and to even start weaning off the ventilator during the day. Not a bad day's work, eh?
I'm getting way ahead of myself but I'm usually over-confident (much to the chagrin of my wife and mother) but I know many have asked, "how long will Madeleine be on X medical equipment?" Here's a quick synopsis/list of goals:
- Ventilator: 24 hours/day through May. The plan-- assuming two good months of health-- is to start weaning from the ventilator during the daytime. We'll likely keep this arrangement for at least another year (Madeleine would be around 2 and a half) before considering weaning further. The vent isn't a problem at night and it ensures that her lungs are supported and also allows Madeleine to grow faster by making breathing easier thereby decreasing the amount of calories she burns.
- Trach: She'll have the trach until we're certain she won't need the ventilator. This means all surgeries need to be completed, including reattachment surgery, and that Madeleine's lungs are developed enough that they won't need ventilator support. A good goal is likely around Madeleine's 3rd birthday. When we take off the ventilator, we'll put a "nose" on the ventilator-- a small cover that humidifies and filters the air that Madeleine breathes (kinda like our own nose). It looks a little strange but nearly as strange as all of her tubes.
- Colostomy bag: At this point, the decision to get rid of the colostomy bag is mostly cosmetic. If we hated the bag and complained enough, our surgeon would agree to reattach her. However, our stance is that first, it is a major surgery and we have no reason to subject Madeleine to such a surgery given her pulmonary hypertension. We do believe the PH is under control but have no reason to tempt fate with such a large surgery. Furthermore, while Madeleine is stooling fine (yes, "stool" is still my favorite word since her birth), her poop is still watery. Over time, her body should get better at extracting liquid via the small intestines. Additionally, when she begins eating solid food, we expect that the stool will thicken up. Until that time, the colostomy bag is a lot more convenient that dealing with watery, poopy diapers. We currently don't have any issues with diaper rash or skin issues associated with the colostomy bag. Eventually, we'll have to deal with these issues but again, they shouldn't be as bad when she is larger. Our current plan is to wait until she starts crawling/walking and then re-assess what to do. The goal is that around 2.5 years old, we'll want to re-attach her.
- Feeding tube: We hope to get rid of the nasal tube in the next few months and to install a direct port for feeding. I'll list out all of the options for this direct port and the decision factors that we must consider but ultimately, we hope to stop using a continuous feed pump and instead "bolus feed" large amounts of food in short timeframes. This would be great as we wouldn't have to carry around the pump and bag all the time.
Here's where I get really confident: if all goes well (yes, a very big "IF"), there could be a day in June where we pick up Madeleine and she doesn't have any cords dangling. The ventilator could be off (albeit for a small amount of time), the feeding tube would only be necessary during bolus feedings, and the rest of the monitors aren't necessary when she's healthy and looking good. That thought brings a huge smile to my face.
Okay, this post is WAAAAY to long. If you've made it this far, thanks for your interest and persistence. I'll post some great pictures from this weekend shortly and will also plan on posting more regular life postings once again. Just a quick FYI: I've been really busy working on our rental house (we just listed it for sale) so I haven't had much free time at all and blogging fell off my priority list. I'm done remodeling for a while and I plan on posting more often. That's all-- Have a great day!
Madeleine and I visited with a number of doctor's yesterday and we got some really great news. In no particular order, we learned:
- Opthamologist: Madeleine has no serious eye problems. Children with Down's Syndrome commonly have problems with lazy eyes, crossed eyes, and other more serious issues but Madeleine doesn't display any of these issues. Furthermore, she didn't have any nearsightedness and the doctors only identified small farsightedness and a slight astigmatism. Neither issue is affecting her at this time and it is fully possible that she'll grow out of it so we don't have any plans for future eye visits for TWO YEARS! I can't describe how strange it was to hear the doctor tell me that she didn't need to see us for two years. It was pretty great.
- Weight: She weighed in at 15 lbs. This was a huge breakthrough as we had been struggling to reach 14 lbs. Honestly, we're a little skeptical that the scale was accurate but regardless, we know that Madeleine is gaining weight.
- Pulmonary: Madeleine is fighting a cold right now-- she may have gotten it from her Dad-- and was needing a slightly higher level of oxygen support. This is slightly concerning and we'll have to monitor her closely for the next few days. Still, the doctors were encouraged by her weight gain and overall demeanor in the office and agreed that we can just hold the course. We are going to meet with them again in two months and if all goes well, we'll likely consider weaning her from the ventilator during the day. Typically, patients start with two hours off the vent and then increase a half hour every week. Our goal is to get her off the ventilator during the day but back on it when she is sleeping. This would make moving her around much easier but would also ensure that we could hook her up to a ventilator easily if she was in distress and/or needed additional support.
- Cardiology: Perhaps the best news of the day came from Cardiology when the doctors confirmed that Madeleine's pulmonary hypertension is unchanged and is being medically managed. Normal right side heart (pulmonary) pressures should be 25% of the left side pressures (systemic pressure) and Madeleine's pressures were at 30%. When Madeleine was diagnosed with pulmonary hypertension, her percentage was above 80% so we've come down a long ways. Given her continued development and weight gain, our cardiologist is going to slowly start weaning one of her PH drugs. Our ultimate goal as her lungs develop is to wean from all PH drugs. We don't know if this will be possible but we're encouraged now that we are at least confident enough to try weaning.
- GI: We didn't meet with a GI doctor but our cardiologist cleared us to discuss removing the nasal feeding tube and installing a direct port through her abdomen. This is great news for a number of reasons. First: the nasal tube is a pain as we have to go back to the hospital whenever Madeleine pulls it out. Second, it poses a risk as it can easily be dislodged without us knowing and could pour food into her lungs-- unlikely but still possible. The direct port sounds bad but from a lifestyle perspective it is much easier to deal with. Eventually, Madeleine will eat by mouth like anyone else but given her low muscle tone issues coupled with her compromised lungs and we're likely a year away from seriously considering mouth feedings. Since it will be that long, the best option is the direct port. The direct port requires a surgical procedure and anathesia. We've avoided this surgery for quite some time as PH patients can have very bad reactions to anasthesia. We're very encouraged that our cardiologist feels confident enough to allow this surgery as it shows how far Madeleine has come in her development. In another post, I'll talk about the different options that the GI doctors will consider when determining what type of port to install.
- Physical development/benchmarking: This is the area where I've been concerned as it is very hard to compare Madeleine against a standard set of development. Since my last post, I've gotten a number of links to various sources of information but there isn't a link for babies that have Down Syndrome, prematurity, GI problems, and Pulmonary hypertension (among other health issues). Simply put, Madeleine is one unique little kid. I was very concerned about how Madeleine has been doing and I'm ecstatic to report that my fears are largely unfounded. In contrast, the doctors were amazed at the progress that Madeleine has made in the last three months. They were glad to see her weight gain and furthermore, were glad to see how much her core body strength has improved (I'll provide another post in the near future that lists out all of Madeleine's new "tricks"). Furthermore, they charted Madeleine' s weight gain against the baby development growth charts and drew the following conclusions:
1) On the "normal" growth chart, Madeleine is still below the 3rd percentile in development but the slope of her growth line is much steeper than the normal curve. For those of you that failed high school geometry (or its been too long to remember) that means that shes catching up to the curve. Even better, when we plotted her weight on the chart adjusted for female children with Down's Syndrome, she's at to 20% percentile! This was significant for two reasons: first, it underscored to me that girl's with down syndrome are actually much smaller than traditional babies-- I didn't really grasp this until yesterday. Additionally, it means that Madeleine is catching up extremely rapidly in the Down Syndrome category. In fact, the most outrageous comment of the day came from Dr. Bloom-- our do everything/quarterback/complex care doctor-- when she suggested that our GI doctors may choose to DECREASE Madeleine's caloric intake so that she doesn't grow too fast! Needless to say, I was near to tears a number of times yesterday.
To summarize yesterday's visit: Madeleine has good eyesight, is gaining weight, her heart conditions are stable and improving, and we now have a plan in place to rid ourselves of the nasal feeding tube and to even start weaning off the ventilator during the day. Not a bad day's work, eh?
I'm getting way ahead of myself but I'm usually over-confident (much to the chagrin of my wife and mother) but I know many have asked, "how long will Madeleine be on X medical equipment?" Here's a quick synopsis/list of goals:
- Ventilator: 24 hours/day through May. The plan-- assuming two good months of health-- is to start weaning from the ventilator during the daytime. We'll likely keep this arrangement for at least another year (Madeleine would be around 2 and a half) before considering weaning further. The vent isn't a problem at night and it ensures that her lungs are supported and also allows Madeleine to grow faster by making breathing easier thereby decreasing the amount of calories she burns.
- Trach: She'll have the trach until we're certain she won't need the ventilator. This means all surgeries need to be completed, including reattachment surgery, and that Madeleine's lungs are developed enough that they won't need ventilator support. A good goal is likely around Madeleine's 3rd birthday. When we take off the ventilator, we'll put a "nose" on the ventilator-- a small cover that humidifies and filters the air that Madeleine breathes (kinda like our own nose). It looks a little strange but nearly as strange as all of her tubes.
- Colostomy bag: At this point, the decision to get rid of the colostomy bag is mostly cosmetic. If we hated the bag and complained enough, our surgeon would agree to reattach her. However, our stance is that first, it is a major surgery and we have no reason to subject Madeleine to such a surgery given her pulmonary hypertension. We do believe the PH is under control but have no reason to tempt fate with such a large surgery. Furthermore, while Madeleine is stooling fine (yes, "stool" is still my favorite word since her birth), her poop is still watery. Over time, her body should get better at extracting liquid via the small intestines. Additionally, when she begins eating solid food, we expect that the stool will thicken up. Until that time, the colostomy bag is a lot more convenient that dealing with watery, poopy diapers. We currently don't have any issues with diaper rash or skin issues associated with the colostomy bag. Eventually, we'll have to deal with these issues but again, they shouldn't be as bad when she is larger. Our current plan is to wait until she starts crawling/walking and then re-assess what to do. The goal is that around 2.5 years old, we'll want to re-attach her.
- Feeding tube: We hope to get rid of the nasal tube in the next few months and to install a direct port for feeding. I'll list out all of the options for this direct port and the decision factors that we must consider but ultimately, we hope to stop using a continuous feed pump and instead "bolus feed" large amounts of food in short timeframes. This would be great as we wouldn't have to carry around the pump and bag all the time.
Here's where I get really confident: if all goes well (yes, a very big "IF"), there could be a day in June where we pick up Madeleine and she doesn't have any cords dangling. The ventilator could be off (albeit for a small amount of time), the feeding tube would only be necessary during bolus feedings, and the rest of the monitors aren't necessary when she's healthy and looking good. That thought brings a huge smile to my face.
Okay, this post is WAAAAY to long. If you've made it this far, thanks for your interest and persistence. I'll post some great pictures from this weekend shortly and will also plan on posting more regular life postings once again. Just a quick FYI: I've been really busy working on our rental house (we just listed it for sale) so I haven't had much free time at all and blogging fell off my priority list. I'm done remodeling for a while and I plan on posting more often. That's all-- Have a great day!
Subscribe to:
Posts (Atom)
Posts
