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...