Fighting a cold

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

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.

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.)

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

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

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.

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!

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.

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!

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.

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

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

Small Bump

Madeleine is doing fine but she's hit a little bit of a bump in terms of getting transferred back to HSC. We were hopeful that she would be transferred tomorrow morning back to HSC as she was tolerating her feeds very well on Sunday and through most of the day yesterday. Unfortunately, when Madeleine was switched to full feeds last night, she had some trouble with dumping-- essentially diarhea-- and the doctors have just slowed down the pace of food. This isn't a major set-back but with the Thanksgiving holiday limiting the number of staff at both Children's and HSC, she isn't going to be transferred to HSC until early next week.

In short: Its a disappointing slow point in her recovery but in the end,it shouldn't result in anything other than a short delay.

That's about all to report right now. Kirsten is on her way to the hospital to resolve Madeleine's respiratory plan. One of the downsides of being the healthiest kid in the ICU is that the doctors don't pay much attention to you and we've had some unanswered questions as to why the doctors continue to tweak her ventilator settings despite previous claims that the settings shouldn't be changed. I'm sure that Kirsten will get it figured out.

Thanks for checking in.

Making Progress

Despite the disappointing showing by Michigan football teams this weekend, Madeleine has made very good progress. She is still in the ICU as it took her a while to shake the virus she picked up. However, she started feeds again yesterday and is tolerating them well. I haven't gotten an update on the plan from this morning's rounds but we believe that Madeleine will reach full feeds in the next few days and ideally will be transferred back to HSC before Thanksgiving. We'll likely spend a few-- hopefully healthy-- weeks at HSC and then make plans to bring her home. In other words, we're going to miss the Dec 1 timeframe that we initially envisioned for getting her home but likely only by a few weeks. Its not great but we've come to accept setbacks.

As far as Madeleine's demeanor, she looked great over the weekend. I had little time to visit with her as we were working on the kitchen for the entire weekend but when we were there, she was attentive and smiling and really seemed to be turning the corner. She was active kicking her legs non-stop and displayed hunger signs including sucking on her hand, pacifier and even her bottom lip. She's still way too skinny but other than that, she's looking great. I don't have any pictures to show for it so you'll have to take my word for it until Kirsten takes some pictures (hopefully tonight.)

In other family news, the kitchen is progressing very well and countertops will be installed today. We hit a few snafus-- namely, the backsplash tile wasn't delivered correctly (long story) and our drywaller didn't show up over the weekend but even with these setbacks, we've made tremendous progress. We'll have another big work weekend after Thanksgiving and electrical finish work will be finished by December 2. Assuming we can get the backsplash tile delivered (no time frame yet) all work will be complete by December 2nd. The major construction is complete as we've demo'd the old kitchen, re-routed air ducts, installed new cabinets, replaced windows, upgraded the electric, run a new gas line, and installed a tile floor all in 6 days. Today, the countertops get installed and we begin doing the "little jobs" of trimming, grouting, cleaning, etc. My uncle Mike and his co-worker JJ deserve special kudos for all of their time and efforts. They're getting paid but there's no to pay someone to work as hard as they have. Its not directly related to Madeleine's care but their ability to work so fast has made it possible for us to get her home and we will enjoy her in our home with a beautiful new kitchen.

One more note unrelated to Madeleine: Happy 35th Anniversary to my parents, Rick and Kay Bushey! Your relationship is still strong so many years later and you're an inspiration to us all (though at times we think you're crazy.) As an FYI to everyone else, my parents are down in their condo in Florida and are staying in Key West tonight. My brothers and I weren't thoughtful enough to set anything up in advance for them but luckily we married women who are much better at such things and they've set them up for a nice romantic night.

In any case, that's the update on Madeleine and related issues. We're staying in town with friends for the Thanksgiving holiday and then Kirsten's parents are coming in for a weekend of additional Turkey eating mixed with finishing tasks in the kitchen. Anyone with a screwdriver and a knowledge of how to use it are welcome to stop by!

Thanks again for everyone's support. I'll provide additional updates this week as we track Madeleine's continued progress.

Brent and Kirsten

Slow Progress

I've been swamped with work and the house construction but finally made it up to the hospital last night with my Uncle Mike last night. We walked in and she was calmly staring at the ceiling while playing with her fingers and looked great. When she saw us, she dropped the pacifier in her mouth and immediately started crying. I wasn't surprised by this reaction as they had stopped feeding her a few hours earlier due to concerns about dumping (diarhea). The basic plan over the next few days is to slowly try to reintroduce food to her gut. Unfortunately, she's struggled the past few days when they give her food so they've had to stop and start a number of times. This likely indicates that she's still getting over a virus infection-- no cultures have grown but everyone's still convinced she has a virus-- and we hope this resolves itself in the short-term. The summary from the doctor ended with: "We want to feed her and as soon as that works, get her out of here."

That's about it for now. Kirsten's headed up tonight to State College with friends to watch Michigan State demolish the Nittany Lions and ruin their story book season. I'll be working to complete the kitchen construction and will definitely spend some time up at the hospital with Madeleine. Don't expect any major updates until Monday when I hope to report that we're close to going back to HSC. Have a great weekend.

Brent

New Plan

As one might expect, the Doctors conducted a bunch of tests on Madeleine in the past 24 hours and they're now waiting to see if anything grows in her cultures. While we wait to see if anything shows up, Madeleine is receiving IV fluids but they've stopped feeding her to give her intestines a break. Assuming everything continues to be fine-- and Madeleine is doing well-- they'll start giving her pedia-lite (essentially sugar water) tomorrow and then on Friday they'll start her back on formula. She'll spend the weekend in the ICU at Children's and, if everything remains calm, we'll re-convene on Monday and determine when to move Madeleine back to HSC.

In short, this just looks like a week delay. It is frustrating that she's gotten sick again and moved backwards but we're hoping that this is a temporary set-back (how many times have I typed that?) and we'll get back on schedule next week. That's all for now-- just wanted you to know the latest information. Thanks again for your support.

Not too Bad...

Kirsten is back at Children's with Madeleine but before departing HSC, she spoke with one of our long term doctors-- Dr. Bloom and we learned the following:

- Madeleine's mucus culture came back positive with bacteria. However, that doesn't mean that there is a bacterial infection-- it just means that bacteria is present. Since there is bacteria on everyone's skin, this isn't very surprising. Furthermore, they're doubtful that there is a bacterial infection.
- The Complete Blood Count (CBC) came back and it indicated that it is likely a viral infection that Madeleine is fighting. I don't fully understand how they can tell but evidently, the CBC gives you a count of red blood cells, white blood cells, and also white blood cell "bands." The bands are the confusing part but by analyzing the "trends" of the bands they can tell if the infection is likely to be bacterial or viral. I'd provide more information but that requires an MD.
- Given Madeleine's symptoms-- increased watery output in the ostomy bag (laymen's term is dairhea) and intermittent temperatures, Madeleine has an old fashioned case of the common cold. Given the diarrhea and danger of dehydration, they're going to closely monitor Madeleine at Children's and then will transfer her back to HSC once she's stable.

We don't have a specific timeframe but if we have to guess, it's probably going to be between 4-7 days. In other words, this is just a temporary setback... at least at this point. We're still frustrated/angry/blah, blah, blah but in the grand scheme of things, this doesn't appear to be that big of a deal so we're also thankful.

Thanks for checking in... I'll try to keep updating as we learn more.

Brent and Kirsten

Going Back to Children's...

We're disappointed to report that Madeleine is headed back to the CICU at Children's due to an infection at her tracheostomy site. She's stable and this infection shouldn't be a huge stumbling block. However, she continues to run intermittent fevers and her fluid levels are fluctuating. Dehydration is a concern in all children with an infection and this concern is heightened when the patient has pulmonary hypertension. Since HSC doesn't monitor fluid levels closely, they recommended sending her back to Children's. One note on the ICU: Madeleine isn't unstable and generally wouldn't go back to the ICU. However, since she is on a ventilator for breathing support, she has to go to an ICU as the policy requires it. Her pulmonary hypertension requires that the ICU be the Cardiac ICU.

We have no idea how long our stay will be and/or how this impacts long term issues. Needless to say, this infection will likely delay/slow down everything. We're disappointed/bummed/angry and lots of other emotions but still confident this is just another bump in the road... I'll provide more information once the transfer takes place and we have a better idea of what is going on.

Brent

PS-- Just in case you missed-- there are new pictures on our blog of Madeleine from Halloween and some at HSC... not a ton but at least some new ones...

Monday Update

Hey Folks,

Sorry for the short, disjointed update last night. I was exhausted and just wanted to get something up. Madeleine is doing good today and before I get to all of the details, I wanted to make sure to send out a specifc thank you. This one is to the nurses, doctors, and staff of the CICU (I think you're checking the blog now)-- THANK YOU! Kirsten bought a card on the discharge and called me asking what to say. I think we ended up putting something like "How do you thank someone for saving your daughter's life?" This was our second extended stay at Children's and again, we were floored by everyone's support and care. Madeleine had some extremely difficult days-- as did Kirsten and I-- and we can't say thank you enough to those that cared for Madeleine while dealing with her crazy, question filled parents. You are special people and we can't thank you enough.

Okay-- with that much needed thank you out of the way-- here's an update on Madeleine at HSC. In short, the transfer to HSC is truly paying off. We were reluctant to move to HSC as we really wanted to get Madeleine home but we're definitely glad to have made the decision. The first reason is that HSC is a very comfortable place and is a perfect step down from the ICU. The nurses are still in the room with Madeleine but they are assigned to three children meaning that they're not able to spend as much time with each child but can monitor her very effectively. Additionally, they take therapy very seriously at HSC and we're confident that Madeleine will be pushed to develop. Third-- and perhaps most importantly-- they're able to medically monitor Madeleine closer than we can at home. As I stated last night, Madeleine has been running temperatures intermittently and they've been able to take blood and mucus samples and have ruled out-- so far-- any infections. Additionally, they've taken an X-Ray and are confident that her lungs are doing well. At this time, they're chalking up the temperatures to a round of vaccinations given last week and also to the ongoing wean from Methadone and Atavan. Madeleine was placed on these drugs a few weeks ago to help wean her from the sedatives required when she was intubated. The head doctor at HSC explained to Kirsten this morning that methadone is an extremely long acting drug and explained that the CICU weaned Madeleine down on her methadone levels last week but the effect is now just hitting her. We're going to be weaning from these drugs for a few more weeks, so we can expect some strange fevers, etc. The nice part is that HSC can track the fevers and can be ready in the event that any infection presents itself. If we were at home, we'd have likely made a trip to the ER and wouldn't have slept from worrying about what was wrong. We're still worried-- that never goes away-- but it helps tremendously knowing that she's in a facility that can manage her situation effectively.

On the home front, we've spent a great deal of time getting ready to renovate our kitchen. Demo starts tomorrow and we have a crazy schedule that concludes next Monday with the countertops being installed. (Yes-- we're fully aware that we're crazy.) Its an extremely condensed schedule we've put together and we're hopeful that we can stick to it. If it happens, my uncle Mike should be nominated for some type of remodeler of the year award.

That's all for the update now. Check out the blog for a few more pictures-- Kirsten should take some more this week. You'll see Madeleine with the Trach for the first time. Its a bit strange looking but she doesn't seem to mind it and it seems to help keep her stable. We'll also be posting the Before, During, and After construction pictures so you can see the dual craziness of our home life.

Thanks again to all-- take care.

Brent

PS-- If you see or talk to my Uncle Matt, tell him to get his butt out of the hospital-- we have enough sick folks in the family. Matt's never been much for cheesey stuff so I'm not writing anything special. Get healthy old man! (Its nice to return some of the tough love he's famous for doling out.)

A Good Weekend

Sorry for the lack of updates-- Kirsten and I have been swamped with spending time with Madeleine while also planning our kitchen and preparing for construction (starting on Tuesday). In any case, I'll provide a quick update on Madeleine and then promise to provide better information this week. Madeleine was transferred to Hospital Services for Children (HSC), a rehab hospital. This was a major step as it indicates she's stable enough to leave the ICU. She's stable and is doing very well at HSC-- though she's run a bit of a fever this afternoon.

We'll know more about any potential infection tomorrow though everyone's inclination is that the fever is in reaction to a number of vaccinations she received at the end of last week.

That's all for now-- I know its not much. I just wanted to get up a quick post and a promise to provide better information this week. Thanks again to everyone-- we're getting closer to getting her home!

Bittersweet (more sweet than bitter) Update

As you might be able to tell from the title, we're not bringing Madeleine home today. While this is somewhat disappointing, we're actually encouraged by this turn of events. We met with the doctors last Thursday to plan out Madeleine's discharge plans and learned that Madeleine wasn't quite ready to be discharged. The first reason was that antibiotics were scheduled to run through Sunday meaning the earliest they would discharge would be this Wednesday. On Wednesday, Madeleine would be technically cleared to leave the ICU but the doctors were split on Madeleine's next step.

In short, all of the doctors wanted to find a medium step in between home and the ICU. At the hospital, there are no other options as all patients on a vent must be in an ICU according to hospital policy. Recognizing this reality, the only other option is a rehab facility. Kirsten and I were at first opposed to a rehab facility as we didn't want to go somewhere without a clear medical rationale as well as clear objectives for release. Some of the doctors-- while preferring a step-down facility-- preferred to default to the parents' preference and sided with us against other doctors who clearly preferred a rehab hospital. In the end, the meeting concluded at an impasse where the doctors agreed that the final decision lay with Kirsten and I regarding next steps. Since the doctors didn't agree on the path moving forward, they essentially left the ball in our court.

Kirsten and I were obviously frustrated and confused and we took last Thursday night and Friday morning to consider our options. We're obviously anxious to get Madeleine into our home but we're also reluctant to rush her home and then simply end back up in the ICU. (Been there, done that.) Here's the part that really confused us: despite all of the contrary medical opinions we heard, Madeleine looks absolutely fantastic. She has gained steady weight for the past two weeks and is now over 9 lbs (4.1 kilos). Additionally, over the past week she's made huge strides with her muscle strength and has recouped most of the head control and muscle functioning that she had prior to this last hospitaliziation. Over the weekend, Madeleine was able to follow along with Kirsten reading a book and she's back to wooing staff as they walk by her room. (seriously, many nurses and doctors have stopped as they're amazed by her rapid progress.) In short: Madeleine has made outstanding gains in the past week and we don't want to slow down this momentum.

We're fairly confident that Madeleine can continue these gains at home but we've decided to default to the Rehab facility for a few weeks. We made this decision for medical as well as lifestyle decisions. On the medical front, Madeleine's weight gain and other vitals will be monitored more closely in the rehab facility. At the facility, they will take regular X-Rays to ensure her lungs remain clear and they'll also check her blood work to ensure that her electrolytes remain stable outside of the ICU. There's no reason to believe that any of these issues will be problematic but we're essentially at the point where we want to do everything we can to prevent any additional setbacks. At the same time, Kirsten and I have turned our attention to a longstanding project: remodeling our kitchen. We originally planned on starting construction in our kitchen the week of March 3rd to overhaul our kitchen in advance of Madeleine's expected arrival in May. As you likely know, Madeleine was born on March 3rd and our garage has been filled with construction supplies and appliances ever since. Recognizing that Madeleine should come home and stay home when she finally gets home, we want to complete the construction in advance of her arrival. As Kirsten put it "The doctors won't let us the leave the house for 4 months once Madeleine leaves so we might as well install a kitchen that we like." I have to hand it to her-- she's more succinct than me. The next few weeks promise to be challenging for all. Madeleine is going to be pushed more than she's ever been pushed before as we expect her to continue to make progress and to make up for time lost. On our end, Kirsten and I are working like crazy to coordinate all of the contractors and we've even roped My Uncle Mike back for this new project. (You'd think he'd learn not to answer our calls!) We're a little concerned about the short timeframe for completing the kitchen but it sure feels nice to be back to our normal hectic lifestyle-- we've been treading water way too long.

In any case, the plan is to transfer Madeleine to the Hospital Services for Children (HSC) sometime this week-- we're waiting for a bed to open up. From a medical and lifestyle stance, this move won't change life for Madeleine or for us. HSC is located about a half mile from Children's (closer to our home) and HSC is run by Children's so Madeleine's primary doctors won't change-- just the nursing staff. Madeleine is going to be moved into the "premie express" floor where they only deal with babies that are considered to be "feeders and growers." There will be 6 babies and 3 nurses in the room at all times, so Madeleine should receive constant care. They do OT and PT on a daily basis and Kirsten and I will fill in as needed/possible. Our plan is to finish the kitchen and get Madeleine home by December 1 with the caveat that Madeleine has no additional setbacks (and we get the construction done.) We're expecting Madeleine to pack on atleast another pound and honestly hope that she comes home close to weighing 11 lbs. If she can pack on the weight, we'll finally believe that she's a true Bushey. :)

That's about it on the Madeleine front. I'm extremely remiss in posting pictures (as are the grandparents) but I'll try to get them up tomorrow-- the federal government is off for Veteran's Day. That's all on our end-- thanks for checking in.

Brent and Kirsten

Monday

That's the day we've scheduled to get Madeleine home. She is doing very well and we're working to set-up all of the logistics for her coming home. Here's the plan for today:
- At noon, we are interviewing three nurses that would be taking care of Madeleine at our house.
- At 1PM, we're meeting with the entire medical team to finalize her medical plan including medicine at home, future appointments and targets.
- At 2PM, we're getting CPR training for a child with a trach.
- At 3PM, we're meeting with the home ventilator trainer to practice adjusting the vent
- At 4PM, we're going to practice changing the trach on Madeleien.

Additionally, we're working with the case manager to resolve insurance issues associated with home nursing. In short, we're a bit busy but excited that we're getting close to getting madeleine home. I'll post the medical plan tomorrow and will try to get pictures posted soon. Thanks

Brent and Kirsten

A Good Weekend

Madeleine continues to recover from the infection that set her back last week and she is starting to get back to "normal." Kirsten and I had a great time with her this past weekend-- we held her for quite a while and played with her while she was in her crib. Additionally, we worked a lot with the trach as we begin to learn how to take care of the trach. I've had lots of questions about the trach when speaking with folks, so let me provide some further information:

- The trach was inserted to allow Madeleine to receive long-term ventilation support. Currently, Madeleine is on very low vent settings and she'll remain on these settings throughout the winter. Next Spring-- in April-- we will re-assess to determine if ventilatory support is necessary.
- There are two main reasons why Madeleine needs the support of the ventilator. First-- her lungs are very compromised by all of her infections and her general prematurity. By providing ventilator support, the lungs don't have to work as hard and can repair themselves easier. Additionally, since Madeleine will breathe easier while on a vent, she should gain weight faster as she won't burn as many calories.
- The trach was necessary because you cannot be intubated long-term. Long-term intubation is uncomfortable (try shoving a tube down your throat) and it is also more difficult to keep clear. The trach is just over 2 inches long so it is relatively easy to suction.
- The trach sits at the base of Madeleine's neck and has a short tube that extends into her airway. The trach itself is held in place by straps that velcro at the back of her neck. (Similar to a choker necklace.) The ventilator tube snaps onto the trach and is held in place by a tie-- we'll use a ribbon when we're home as it looks a little better.
- The most frequently asked question is: what if the trach or ventilator comes out or off? The asnwer is: it will come off/out and it isn't a big deal. Here's why: Madeleine, for the most part, is breathing on her own as the ventilator is just providing a little bit of support-- she's doing most of the work. I held her on Saturday when she was extremely active and the vent popped off a couple of times. I just had to pop it back on-- the nurse didn't even come over. We'll get better at tying the vent on but its not a big deal if the tube falls off. It is a little bigger deal if the trach itself comes out. Still, Madeleine can breathe through the hole where the trach inserts and you just need to insert a new trach back in. Kirsten and I are changing the trach today for the first time so that should be interesting.
- In terms of caring for the trach, its pretty straightforward. The trach itself is changed once/week. (Monday is trach change day.) They change it as gunk builds up on the trach and you don't want it to be obstructed or cause an infection. On a twice daily basis, we'll change the straps that hold the trach in place. This ensures that we keep the site clean and also watch out for any rubbing/wear on Madeleine's neck. Additionally, since Madeleine can't clear out the gunk on her own, a person must be near to suction Madeleine when she starts to cough. For this reason, we'll have nursing care at our house during the day when we're at work and at night so that we can sleep without worrying about Madeleine.
- Kirsten and I have come to realize that in the grand scheme of things, the trach isn't a big deal. From a cosmetic standpoint, it is pretty strange/intimidating but Madeleine doesn't seem to mind it and is actually very comfortable. (My parents have a ton of pictures that I'll post soon.) When you first see the trach-- as well as Madeleine's colostomy bag and associated cords, it can be intimidating but once you get past all of that, she's pretty comfortable and over time, all of these devices/cords will go away.

That's about it on the trach issues. As far as other updates, we're cautiously targeting next Monday for Madeleine's release from the hospital. We've spoken with the case manager and the list for discharge is fairly intimidating. Still, we think that Madeleine is stabilizing and if we're able to get everything in order and Madeleine can stay healthy, we'll have our daughter home next week. There are a lot of "ifs" involved with that scenario but things are trending in the right direction.

One final note: I've gotten lots of questions about her size. I haven't posted her weight much because its been fairly depressing. However, we were asked to bring in clothes over the weekend and Madeleine has definitely grown-- she's much longer now and is fitting comfortably into the 3-6 mos clothes. When she was admitted two months ago she was just starting to wear 0-3 mos. The difference is that while she's much longer, she's extremely skinny-- her legs don't come close to filling in even half of the openings. (The nurse on Saturday said, tough luck for your daughter-- I'd kill for someone to tell me my thighs were too skinny.)

Last night she was weighed at 8 lbs 2 oz-- not great but its a little heavier. Our goal is to get her back to the 1 oz/day that we've been targeting for a long time.

That's all for now-- I think that's enough. Thanks to everyone for your support. Take care,

Brent

PS-- Judy, we're thinking of you...

Moving in the Right Direction

Since learning on Tuesday that Madeleine had an infection, we've seen steady progress in the right direction and we're fairly confident that Madeleine is overcoming this infection successfully. We've obviously pleased and we're simply chalking this episode up to a fact of life-- it seems like everyone we know in the DC area is fighting a cold right now. The doctors haven't gotten anything in the cultures-- that is not uncommon-- but they'll likely keep the antibiotics going for a few more days just to be safe.

In terms of impacting the date for Madeleine coming home, we're still not able to predict how long this will delay us. In a perfect world, Madeleine would be coming home today or Monday-- neither date is a possibility as Madeleine is still being weaned from the ventilator-- she's come down on her oxygen levels to 35% (very good) but still needs to come down on the breathing rate and amount of pressure support provided by the vent. Additionally, the doctors are going to closely monitor Madeleine to make sure that she's stable and able to be successful at the lower vent settings.

All in all, we're in a good state in the long-term and we're dealing with the frustrating short-term issues. On the bright side, this delay gives us time to resolve some lingering insurance questions, lets us get our house fully prepared for having nursing care in our home, and also allows us to get trained and more comfortable with the trach.

That's all for now-- we'll keep you posted as we learn more.

Brent and Kirsten

Not a Huge Deal

Hey folks-- I've gotten a few worried phone calls and emails and I feel the need to clarify my last post. Madeleine is doing fine-- the doctors are already coming down on her oxygen support and they're pretty convinced that this is a minor virus infection. We're still awaiting results from the cultures (they typically take around 24 hours) so right now, they are administering general antibiotics to address any possible bacterial infections and are also protecting against secondary infections (pneumonia being the biggest concern.)

All that being said, this isn't a big deal. Madeleine's come through 5 surgeries and a ton of other much worse things. That being said, it was and is frustrating to accept that our time frame is being delayed again. I was very prepared for Madeleine to be home soon and this is going to delay us. It could be just a few days and while not a big deal in the grand scheme of things, every day/hour/minute/second delay in the hospital is one too long for me. Simply put: I want my kid home and she will get home, just not in the timeframe we expected...

Thanks for your concern and support.

Brent

Banging My Head Against My Desk

I just got off the phone with the hospital and they're starting antibiotics under the suspicion that Madeleine has an infection. She has a low grade fever, has increased output in her colostomy bag, and the mucus secretions from the trach are thicker. Additionally, they did a scan of her blood (CBC) and it revealed an elevated white blood cell count. All in all, its pretty textbook signs that Madeleine has some type of infection.

There's nothing particularly alarming or terrible but they've sent off cultures and have started general antibiotics (Venc and mirapenum) to treat any possible bacterial infection. We don't know much else but its likely this will delay her return home-- they've gone up on her vent settings to keep her comfortable. In the grand scheme of things, is this a big deal? Likely not. Its just frustrating/agonizing/unfair and lots of other much more inappropriate words all tied together. (I don't have it in me right now to be positive/upbeat.)

I'll post more once we hear back-- its likely we won't know much for the first 24-48 hours...

Close to Going Home

All,

Sorry for the lack of posts in the past week-- I've been busy, tired, and just didn't feel like blogging. Despite my lack of energy, Madeleine continues to do very well. The surgery went great last week and she's recovering very well. Today was the week anniversary of the surgery and the original trach was replaced today and the surgical sutures were removed. The trach surgeon was happy with how it looks and has cleared her for normal maintenance procedures. With that in mind, here's a recap of everything we've learned about the trach and the medical plan going forward:

- The trach sits at the base of Madeleine's throat (if you want to know exactly where, follow your sternum up with your index finger until you get to the end in between your collarbones-- there should be a semi-circle opening. )
- The trach is easily removed and has to be changed on a weekly basis. The most frequent question I've gotten so far is "what if she pulls it out?" The answer is that we just put it back in. The trach is held in place by velcro straps that make it look like a tight necklace. (I'll take pictures soon so you can see what it looks like.)
- Madeleine has been weaned to very low levels of ventilator support (for those that care, she's on a rate of 8 breaths/minute and 12 on pressure.) She doesn't have to have this support all of the time but it ensures that her lungs don't collapse and also allows her to breathe more easily, thereby conserving calories for growth. She is also getting 30% oxygen support-- normal air is 21%. This low level of oxygen support is given to help her lungs develop and should also help prevent increases in Madeleine's pulmonary hypertension.
- Madeleine is going to be on 24 hour ventilator support until at least April of next year. This isn't typical and isn't absolutely required for Madeleine but the doctors have set this expectation as they want to maximize her growth and also want to protect her in the event that she gets sick this winter. Since her lungs are extremely compromised and her pulmonary hypertension can get drastically worse during an infection, they want to have the ventilator providing support throughout the winter. This sounds pretty bad but the vent came last week and it is small-- about the size of an old laptop. Its heavy but its size makes it fairly easy to maneuver.
- In April, we'll determine the path going forward. A lot will depend on how her lungs are performing and how much weight she gains. In the spring, they'll re-assess her pulmonary hypertension with the expectation that with her growing, the PH will be lower. Additionally, they'll re-conduct tests on her GI tract (swallow study, sleep study, milk scan, etc.) to determine if Madeleine can begin feeding via her mouth again. (she's going to be on tube feeding via the NJ tube throughout the winter.)
- In the next few months, we're going to spend a lot of time at home as we've been warned to limit Madeleine's interactions with others given the concern surrounding infection. We hope folks can visit (sans children) and hope that you'll understand our hyper-vigilance regarding infection. (prepare to be inundated with Purel when you stop by.) We hate the concept of keeping Madeleine isolated but since any infection can be life threatening, we've accepted that as a fact.
- In short- the plan for the next four months is to keep Madeleine at home as much as possible, to keep her happy and stable, to see significant gain in weight, and-- most importantly-- outside of a few checkups, to AVOID THE HOSPITAL AS MUCH AS POSSIBLE. (We love the foks at Children's but I think they understand the necessity for capital letters.)
- Given Madeleine's medical needs, we're going to have nursing care in our house for 18 hours/day. This care will allow us to go to work knowing that a nurse is caring for Madeleine. Additionally, we'll have a nurse at home when we're asleep so that we don't have to worry about Madeleine. The big concern is that Madeleine must be suctioned when she is on the ventilator and we can't worry about that and sleep soundly. This requires some major life changes for Kirsten and I and we've already taken one step by moving Madeleine's nursery onto the ground floor office. (My parents have done the Lion's share of moving and painting and we can't thank them enough.) Again, these were changes we didn't want nor anticipate but by moving the nursery to the ground floor, we limit the amount of lifting and moving of all of Madeleine's medical equipment and we also limit the intrusion of a nurse when we're sleeping (and I am snoring.)

That's the major changes that we've learned/made in the past week. We're also still getting used to the cosmetic nature of the trach. I'm now getting to the point where it doesn't bother me but the first few times I saw it, it was definitely difficult to see. (Its hard to explain.) I understand why Madeleine needs it and I think it was the absolute best decision we could have made as she looks much happier and more comfortable. Still, its difficult to see something like that on your child. Kirsten and I recognize that others may have a difficult time the first time they see it and that's just something we'll have to get used to. It isn't a permanent fixture on Madeleine-- its just medical support that she needs so that she can grow and develop.

That's all for now. We're hoping to get Madeleine home soon as she'll be medically cleared on Wednesday or Thursday. The logistics of identifying nursing and getting the insurance and other stuff resolved is slowing us down right now but I'm sure we'll get all of that figured out in the next few days. Thanks again for your support!

Brent and Kirsten

Successful Surgery

Madeleine's tracheostomy was successfully inserted yesterday and she is recovering very well. The surgeon was extremely pleased with the procedure. In addition to inserting the trach, they took a "look" with cameras to assess the extent of any damage done by the previous ventilation tubes as this is a risk whenever you are intubated. There was some swelling in the airway that could be attributed to the presence of the prior intubations. They can re-assess later once the swelling from surgery has decreased and the hope and expectation is that this will go away.

In terms of immediate recovery, we've been told to expect Madeleine to experience some pain adn discomfort for the next 5-7 days. They're giving her medication to keep her comfortable so we hope the pain she feels is minimal. Once past that timeframe, we expect her to be much more comfortable.

The hardest part about the tracheostomy so far is the cosmetic nature. In some ways, it is much better as she has far less tape on her face-- only the feeding tube's tape remains. On the flip side, it is hard to see another "medical apparatus" on Madeleine. I know rationally that she needed it and that it will go away once its no longer needed but it is still tough to accept. I'll get over it-- just being honest about the frustrating aspect of the surgery.

In terms of plans moving forward, we're meeting with Madeleine's whole team of doctors and caregivers today and will lay out the plan going forward. We have tons of questions including:

- Expected time remaining in the hospital?
- Expected time in a rehabilitation hospital (if any)?
- Medical supplies we'll need once she gets home?
- Nursing care we'll need at home?
- The impact on lifestyle when Madeleine is on the ventilator.
- The impact on lifestyle as Madeleine is weaned from the ventilator and then breathes through the tracheostomy?
- When can we start to wean off the ventilator? What evidence do we need to look for?
- How long do we expect her to need the ventilator? What milestones will indicate that she won't need it?
- How long do we expect the trach to remain? What milestones will indicate that it can be removed?
- What other procedures may be necessary to ensure that Madeleine's airway is protected? This includes any surgeries to strengthen the valve at the top of her stomach to prevent reflux and posible aspirations. How do we make such decisions?

We've had preliminary discusions on all of these issues but we want to raise these questions in the family meeting so that we reach a consensus with her medical team. The folks at Children's have been great-- especially the CICU folks during our stay-- but getting everyone on the same page is difficult and the family meeting should help facilitate such communication.

We'll post the results of the meeting when we get some time following the meeting. Thanks again for your support.

Brent and Kirsten

Surgery Today

If you haven't seen the posting from yesterday, please read below as it explains the tracheostomy surgery/procedure. We met with Madeleine's doctors yesterday and agreed that the tracheostomy is needed and there is an opening for today (Monday to do the procedure). We're the "add-on" case for the day so we don't have a specific time. Its likely that the procedure will take place in the afternoon but if they have a change in schedule this morning, they will take her in. As I said in my post yesterday, we're disappointed to reach the point where Madeleine is dependent on the vent for the next few months but we've accepted that as fact and are looking forward to seeing Madeleine make progress in the weeks and months to come. We've grilled her team of doctors and they're quite confident that this is the step that will get us over the hump.

In any case, I don't have much else to report right now. I'll definitely send up a post to let everyone know once the procedure is completed. We also have a team meeting with all of Madeleine's doctors (I hope they have a large room) so that we can discuss the short and long-term ramifications of the tracheostomy. The meeting usually takes place before the procedure but we realized that we're doing the procedure anyway so there was no need to wait. Instead, we hope to use the meeting as a way to lay out medical milestones for Madeleine (at this weight, we'll decide to try this... etc.). We will also discuss the lifestyle impact of the trach procedure and how Kirsten and I will need to adjust our lifestyle to meet Madeleine's needs. That's all important information and I'm sure will be included in the posts this week.

Thanks all. Keep the prayers/thoughts coming. This surgery/procedure is pretty routine but with Madeleine, routine seems to be anything but....

Brent and Kirsten

Up and Down Week

Up and Down Week

Its been a long and busy week, thus the lack of posts. This will likely be a long post so if you’re looking for the quick status: Madeleine is currently on a ventilator and is stable. Read on for the details and the plan moving forward.

My last post indicated that Madeleine was intubated and was stable. The following day, Madeleine continued her slow wean from the ventilator and the plan was to extubate Madeleine by the end of the week. Of course, Madeleine—true to form—decided to shake up the plans on Tuesday night when she extubated herself by pulling out her breathing tube. The nurse was shocked that Madeleine was able to do it as the tube was connected very well and Madeleine was sleeping. The nurse stepped out for a moment and when she came back in Madeleine was still sleeping but the ventilator was making noise. The nurse went to turn off the buzzer on the ventilator and then realized that Madeleine had pulled her tube out. Kirsten and I have seen babies in the NICU extubate themselves and it is usually very scary as the baby can struggle due to the traumatic nature of such a drastic change. Not my daughter... Luckily for Madeleine, she was fine and didn’t even need to be re-intubated. Yes—we’ve just added this event to the ever growing pile of crazy events that Madeleine has encountered.

Unfortunately, after a few good days off the ventilator, Madeleine’s lung performance went down hill on Friday and she was re-intubated on Friday afternoon. Right now, Madeleine is doing well on the ventilator and we’re faced with some difficult decisions. The doctors are concerned that Madeleine needs long-term (likely months) ventilator support until she will be able to breathe effectively. They believe that the repeated bouts with pneumonia, her prematurity, her pulmonary hypertension, and her inability to grow have caused her lungs to be underdeveloped and unable to breathe without the support of a ventilator. Furthermore, they believe that while she can do well for a few days off the ventilator, her repeated steps back makes it difficult for her to gain weight and develop. Recognizing that Madeleine can’t continue to wean off the ventilator only to be re-intubated a week later, they are recommending that Madeleine receive a tracheostomy—a surgically placed ventilator tube. Their reasoning is as follows:

- A tracheostomy (trach) is recommended whenever someone will knowingly be on a ventilator longer than a few weeks.
- The trach is better for someone with Madeleine's medical picture as it is easier for the nurses to suction and clear out the gunk (that's a technical term) in her lungs.
- The trach is less intrusive than a normal ventilator tube as it doesn't impact her sinuses and some of her throat/airway. Repeated on/off intubation can cause scarring and other problems.

As with any medical procedure/treatment, there are some negatives as well. While there is some medical risk with the trach, the negatives are more lifestyle issues as there will be additional burden on maintaining and monitoring Madeleine with a trach. I'll go into detail on these issues in a future posting and while they could be significant, they're somewhat inconsequential as we agree with the doctors that from a medical standpoint, Madeleine needs to have a trach. We're obviously disappointed that we have to take this step and admit that Madeleine needs to have medical support for an extended period of time. At the same time, we're comfortable with the fact that this step should be the one that helps get us over the hump and will allow Madeleine to grow and develop. That's essentially the most important thing for Madeleine right now. As she grows and develops, the doctors expect her lung functioning to improve and they expect her hypertension to improve/decrease. Eventually, they will be able to re-attach Madeleine's intestines, thereby eliminating the colostomy bag and she'll also develop to the point where we can begin feeding her without a feeding tube. These goals are all a bit down the line and we can't even begin to put a time frame around them. However, I've listed them to reiterate that the goal of the trach for Madeleine is to allow her to develop so that all of her other issues can be addressed. Furthermore, the trach itself is a temporary step as it will be removed when the doctors determine that she's able to breather on her own. In short: its a step we would prefer to avoid but recognizing the necessity, we're moving forward and expect this to be the step that allows Madeleine to recover and move forward effectively.

I'm sure you may have questions about a trach as it is a fairly uncommon procedure. I'll do my best to post information about how they do the procedure, what it entails, and how long we'll have it as we learn more about it. If you have questions, feel free to research online and/or give us a call. Thanks again for your support. I'm headed to the hospital and I plan on posting additional information later tonight.

Brent

The Roller Coaster Continues

This was supposed to be a positive post about all of the progress that Madeleine has made since being weaned last week. Unfortunately, after a great day two days ago on Saturday, Madeleine took a turn for the worse yesterday. She's stable and okay right now but she had to be intubated (placed on a ventilator) yesterday after struggling most of the day with her oxygen saturation levels. The doctors aren't entirely convinced they know what is going on but they believe the culprit is her lungs and not her pulmonary hypertension. Here's what happened yesterday:

- Madeleine was breathing great all day Saturday and looked great-- we held her and played with her and talked with the doctors about when she could be moved off the ICU floor. The only factor holding Madeleine back was that she was still on high flow nasal canula. Additionally, Madeleine's X-Rays indicated that her left lung was collapsed/obstructed and the assumption was that she had a mucus plug (the technical term I believe is a snot ball or lugie) that was blocking her ability to move air in and out of the left lung. This sounds bad but while it isn't good, its fairly common when coming off a ventilator and the assumption was that it would slowly resolve as Madeleine's health improved.

- On Sunday, the doctors weaned the high flow from 7 liters to 8 liters and a little while later, the nurse noticed that Madeleine's oxygen saturation level was dropping.

- The doctors ordered an X-Ray at noon (the morning X ray was taken at 6AM) and were astonished with the results as the midday X-Ray showed that the left lung was fully ventilated but the right lung was collapsed. It isn't uncommon for different areas of the lung to collapse at different periods but this shift was extremely dramatic and shocking. In fact, the first assumption was that the X-Ray technician had flipped Madeleine over.

- The doctors and nurses began chest percussions (they use little rubber mallets and "pound" on Madeleine's chest and back trying to loosen up the mucus plugs. (It sounds harsh but Madeleine really likes it.) Unfortunately, this didn't work.

- They tried lots of other interventions-- they "tented" her with oxygen and even added nitric oxide to the high flow nasal canula. In the end, nothing could pull her saturation rates up so they made the decision to intubate Madeleine again.

Since she's been intubated, Madeleine has done much better. Both of her lungs are inflated and she's responded to the Chest PT (percussions) very well. Additionally, they've been able to wean some of her vent settings and support. In short: its going much better this time than the last time she was intubated. That being said, this is still a major step back and its going to be at least a few days before we will consider extubation.

Kirsten and I are obviously frustrated and disappointed in this additional setback. At the same time, we're encouraged by Madeleine's will to fight and we're fully expecting her to come back from this setback. (I sound like a broken record, don't I?)

That's all for now. I'll provide further updates tomorrow. Thanks again to everyone.

Brent and Kirsten

PS-- A belated congratulations to Rebecca and Lauren on completing the Chicago marathon on Sunday. Despite a persistent leg injury, Lauren was able to cover 21 miles before wisely dropping our (her knee pain was shooting into her hip.) Rebecca finished in 4:24, beating her target goal by six minutes! They're both an inspiration to Kirsten and I!

As Lee Corso Says...

Not so fast my friend... Madeleine is doing fine but she's not able to be weaned in the aggressive manner that I laid out this morning. They tried weaning her every 8 hours but this morning's X-Ray revealed some collapsed areas in the lung. That's nothing new for Madeleine and it was easily corrected by increasing her flow back to 10 liters. She's now down to 9 liters and is doing fine and the new schedule is to wean 1 liter every 24 hours. That's excruciatingly slow but Madeleine's still moving in the right direction and that's all that matters. (I'll keep repeating that to myself when I get frustrated.)

That's all for now. I do have a very cool picture to post with a neat story-- but I can't post right now. Check back later tonight for some cool stuff.

Brent

Steady Progress

Last evening, the doctors decided that Madeleine is stable and they're moving rather quickly to get her weaned from the breathing support so that she can be moved out of the CICU. Starting last night at 10PM, the nurses began decreasing the flow (rate of air) that Madeleine is receiving via the high flow nasal canula. She was turned down to 8 liters at 10PM and then went down to 7 liters at 6AM this morning. We're scheduled to go to 6 liters at 2PM and 5liters at 10PM. If all goes well, she'll be at 4 liters tomorrow morning at which point they will likely discuss making the transition from the high flow canula to the traditional nasal canula. If this change is made tomorrow, we think its likely she'll move off the CICU by tomorrow evening and/or Saturday morning. As you might expect, we're cautiously optimistic as we know that Madeleine could have a set back-- no one is immune to setbacks when in an ICU setting. That being said-- Madeleine is really doing great.

That's all for now. Check back for an afternoon update of pictures. Thanks,

Brent

Successful Extubation

Madeleine was extubated last evening and is doing very well breathing without the ventilator. She's still on a high flow nasal canula but all reports this morning are that she's doing well and will be slowly weaned. We're trying not to look too far ahead as we know that Madeleine can always fall backwards, but if all goes according to plan, its possible that Madeleine's stay in the CICU will be coming to an end. (We're likely still days away.) We expect to move from the CICU once she's stable and has been taken off the high flow nasal canula. Rather than go home, we'll likely go the Heart and Kidney Floor-- just down the hallway-- and will then determine a plan to get her home. Again, that's down the road a bit but that's where we're focused.

That's all for now-- all good news. Thanks again for your support.

Brent and Kirsten

Slight Delay

You didn't really expect Madeleine to make it easy did you? This delay doesn't appear to be a big deal but the doctors are playing it safe after Madeleine spiked a temperature yesterday. We're not exactly sure what happened but yesterday, the nurse noticed she was running a temperature (around 101F/38C). The standard response to a fever in the ICU is to take blood, urine, and respiratory cultures and start a round of IV antibiotics. Madeleine received two antibiotics yesterday and within 6 hours, the fever was gone. The cultures are negative so far and assuming they stay this way, the doctors will discontinue the antibiotics tomorrow (after 48 hours). We're not exactly sure what happened and honestly, as long as it doesn't come back, don't really care.

We're particularly encouraged that this isn't a big deal as there was never a need to increase Madeleine's medical support. In fact, they've continued to slowly wean her off her support. She's close to being off all sedation and the vent settings are nearly weaned to extubation levels. They'll likely test her tonight for her extubation readiness and then will extubate tomorrow. Its not the schedule we were hoping for, but in the grand scheme of things, its not a big setback.

That's all on the medical front. On a related issue, Kirsten has started back at work today-- she was on maternity leave for 12 weeks. I know she's disappointed about going back to work with Madeleine still in the hospital as its not exactly a dream scenario that a new mother envisions. That being said, I just wanted to publicly post my admiration for Kirsten. If you know me, you're fully aware that I'm not the easiest guy to live with-- especially when my routines are thrown out of whack. Despite all of Madeleine's ups and downs, Kirsten has been there as my partner and best friend, keeping me centered and ensuring that our life continues moving forward. She's amazing and I definitely don't say thank you enough. Thanks babe.

Alright, that's all for now. Thanks again for your support. Ideally, you'll see a post tomorrow trumpeting Madeleine's progress.

Brent

Still on Target

I'm just posting a quick update to say that Madeleine is still on target for tomorrow morning as she's done very well being weaned from her sedatives as well as from the nitric oxide and vent settings. She's completely off nitric oxide and her vent settings are very close to wean levels. We're not too focused on tomorrow as its completely possible that they'll decide that Madeleine is doing well but could use an extra day of rest before extubation. Still, we're extremely pleased with her progress and look forward to playing with her soon.

Have a good weekend-- wherever you are, we hope the weather is as perfect as it is here in DC. Get out and enjoy it-- it won't last forever. (Unless you live in Hawaii or SoCal-- not cool.)

Brent and Kirsten

PS-- A big shout out to our friends Steve and Becky for their first 10 mile run this morning. Also for my co-worker James-- he made Treasury proud. Last but not least, Rebecca and Lauren-- our two former PAs from the NICU that are running the Chicago Marathon next weekend-- also ran the Army Ten Miler this morning. As soon as I can find the camera cord (a constant struggle in my life), we'll have pictures posted to the blog of everyone!

Monday's the Target date

For extubating Madeleine from the ventilator. This is the plan that was laid out this morning during rounds in the CICU. We all know that the adage "the best laid plans of men and mice..." applies to Madeleine wholeheartedly so we're not getting to excited. That being said, she's doing really great. They continue to slowly turn down the nitric oxide and the ventilator settings and she is satting very well. They've discontinued the antibiotics and over the weekend, they hope to get rid of the nitric oxide and sedation. Once that is all gone, the final step is to get her ventilator settings down and ensure that she's able to handle the extubation process. There are tons of issues that could delay us, so we're prepared for delays. However, we are extremely encouraged that the doctors were willing to even discuss dates.

That's all for now. I'll provide daily updates over the weekend. Thanks again for everyone's support.

Brent

Continued Progress

Sorry for the lack of posts-- for the first time in a while, I just didn't have much to report and work took precedence-- the Federal fiscal year ends on 9/30 and things get a little hectic in my office. It was actually nice to be distracted.

In any case, Madeleine has really made a dramatic turn around in the past week. We're still being very cautious as we know that she can turn on a dime but she's done great the past few days. Here are her current settings:

- Dopamine (blood pressure): Was completely weaned yesterday.
- Vecuronium (VEC- the paralytic drug): Was completely weaned two days ago.
- Oxygen: She's down to 50%.
- Nitric Oxide: She's down to 10 mcgs.
- She's still on low doses of Fentanyl and Versed (two sedatives) to ensure she remains calm while on the vent but she's awake portions of the day and calm.

That's pretty much it. Over the next few days, we hope to continue weaning the nitric oxide and we've been warned that the last 5 mcgs can be excruciatingly slow and difficults-- big surprise, eh? Once the nitric is weaned, they'll have to tweak the oxygen a bit further down as well as some of her other vent settings and then we'll discuss extubation. (All of this presupposes that there are no setbacks.) We still haven't talked timeframes with the doctors but Kirsten and I think its possible that she could be extubated early next week. We're not getting our hopes up and honestly don't care how long it takes, but we can't help but start thinking that things are going well.

That's all for now. We'll keep you posted as things continue to progress.

Brent and Kirsten

Baby Steps

Madeleine has had another positive day today. She's maintained her low level of oxygen support and was successfully weaned from Vecuronium (VEC), the paralytic drug that they used to keep Madeleine calm. This was a fairly large step forward today as the doctors weren't certain that Madeleine could remain calm after the VEC was weaned. As with everything else, there is no guarantee that we won't have to go back on the VEC but we're cautiously optimistic.

The next step is to slowly begin weaning the nitric oxide-- they're not sure if we'll start this tonight or if we'll wait until tomorrow to move forward. As with everything else, our mantra is simple: slow and steady wins the race. Madeleine is doing great and we don't want to push her to the point that she falls backward. Its still possible that we'll fall backward anyway but the hope is that by going slowly, we can avoid further crises days.

That's all from our end. We're hopeful for slow and steady-- dare we say boring?-- days. Thanks again,

Brent

PS-- I forgot the most important point: for the first time in well over a week, Madeleine held my hand. She's still heavily sedated so she probably thought I was a smurf or a pink elephant but I'll take that over seeing my daughter paralyzed...

Madeleine: The Roller Coaster

This will likely be a long post, so let me get the important details up front: After some extremely difficult days, Madeleine has stabilized and is "doing well." I've used the quotation marks because she's still on a ventilator in the CICU but she has come a long ways in the past few days and we're feeling much better about her short and long-term prognosis.

That's the short story. Here's the long one: Starting on Thursday afternoon, Madeleine began to struggle with her oxygen saturation levels and her oxygen dependence grew rapidly. She finally stabilized Thursday evening and the doctors told us that our "day of crisis" appeared to be over. Friday was a relatively easier day as Madeleine appeared to stabilize despite being very reliant on oxygen and other ventilator support. We hoped that this stable trend would continue through the weekend but Saturday turned into another day of instability. In addition to struggling to maintain her oxygen saturation levels, on Saturday, Madeleine's blood pressure fluctuated from very high pressures to dangerously low pressures. Madeleine's nurse had never met Madeleine before Saturday and by the afternoon she looked at Kirsten and I and exclaimed "she's just really frustrating and doesn't make any sense." I think you can categorize such a statement as "preaching to the choir."

Fortunately, starting on Saturday night, Madeleine finally appeared to get her act together and in the past 24 hours, she's made major progress. She has greatly reduced her oxygen dependence to 50%, has stabilized her blood pressure allowing them to wean her dopamine level (down to 8 mcgs from 12) and the doctors are beginning to make plans for tomorrow's weaning. (They don't make plans when they're concerned about another crisis.) Assuming Madeleine stays on course, tomorrow they hope to have her dopamine down to 5 mcgs (a low level) and then will turn to reducing the nitric oxide-- she's currently at 20mcgs (a high level). In the next few days, we hope to slowly wean the nitric oxide, the dopamine, the oxygen and other ventilator settings. If all goes well, the doctors would possibly talk about extubating Madeleine by the end of the week.

We'd like to be optimistic about such a short timeframe but honestly we're dug in for the long haul as we've learned (or re-learned) these lessons in the past few days:
1) Pulmonary hypertension is extremely complicated and when you are on a ventilator and sick, you can expect to have challenges-- weaning is never simple and just when you think things are going well, they can all fall apart.
2) The ups and downs are extremely frustrating and can be dangerous. While this reality is difficult to accept, we learned this fact on Saturday and it at least helped us understand why Madeleine is having such a difficult time-- understanding helps us keep things in perspective.
3) Madeleine is an extremely frustrating and difficult kid but is also tough as nails. If you're a frequent visitor to this blog, you already know this fact. Kirsten and I have had some difficult days and we've honestly questioned whether Madeleine would make it through these challenges. We're not out of the woods yet but we've been amazed by Madeleine's will to live and are confident that she's going to make it through these challenges. She just doesn't quit and I love that about her. (Though I'd love her if she could find a way to get healthy and stay that way.)
4) We have an astonishing network of friends and family. Here's a few examples of the support that we've been amazed by:
- During our difficult day on Saturday, two of Madeleine's long-time caregivers came to Madeleine's hospital room and talked to us, explaining how pulmonary hypertension helps explain the ups and downs. Their ability to put our experience in perspective and to empathize (I can never remember if its empathy or sympathy?) with us was truly remarkable and helped us unwind and sleep well on Saturday night. (The important of sleeping well can't be overstated.)
- Kirsten's co-workers, sensing that we were down, put together an amazing basket of goodies including food for the week, lotions, magazines, and tons of other items.
- Our parents have agreed to travel out here in the next few weeks to help support us as Kirsten makes the transition back to work (starting next Monday). Given the uncertainty surrounding Madeleine's situation, this flexibility makes it much easier for Kirsten and I to continue working, knowing that Madeleine will have an advocate in the hospital.
- One friend of ours demanded my keys so that she could go to our house and clean our kitchen. She'd heard Kirsten complain about not having enough time to clean and she practically backed me against the wall telling me that I needed to give her my keys so that Kirsten wouldn't have to go home to a dirty kitchen. (true story)
- Our close friends and neighbors allowed us to stay over last night to watch the Penn State game despite being so tired, they both fell asleep in the third quarter. We didn't want to leave as VA. Tech was on and pre-empted PSU in our house. (They have the Game Day package.) This is just one example of this couple's constant role as our "surrogate DC area family" as they're the ones that help us pick up the pieces on a daily-- and sometimes hourly-- basis.

In short: Kirsten and I continue to be amazed by the outpouring of support that we've received. (These stories don't take into account the countless number of people who have listened to us vent about Madeleine and the difficulties we've faced.) We're humbled and honestly don't feel worthy of such kind acts. We simply hope that folks know how appreciative we are even if we can't get thank you notes out in a timely fashion.

I'm sure my brothers are reading this and right about now are thinking "Geez Brent, cut it with sappy crap" so I won't continue any further. I'll report back this week as the hospital sagas continue and hope to repot that the Madeleine roller coaster continues on this smooth section. Have a good start to the week and thanks again for your support.

Brent and Kirsten