Homehomehome...We Are HOME!

Wow! We have been home one week now...this is after an additional month-long stay in-hospital (totalling 2 months). I hadn't bothered to update the houseblog yet because, well, no house-related progress had been made during the interim. This all started on May 30th, when our 3 yo daughter who has Hypoplastic Left Heart Syndrome (HLHS) went in for an open-heart surgery [not a direct part of her 3-part surgery]. After a month in recovery, we went home, only to return back to the hospital within a week. In short, she developed a further infection and her life was in serious danger for some time. There was plenty of drama to go with that stay, and she was so depressed for most of that time.

During that time, I focused my blog-writing prowess on her 'blog [carepages.com], and completely neglected the house & it's 'blog. I spent most of my time driving, as I work Northwest of home (1-2 hours), and the hospital was Southwest (~2-3 hours). I have written enough for a book on her carepage by now, and if you care for the details, I will happily point the way. So for here, let me just say that Michaela is doing very well now and is her happy charming self again. The only caveat is that her total heart-function is still not very strong, which means that she may not be a candidate for the 3rd heart surgery (Fontan)...this would then mean that she may be getting a heart transplant before she turns 5.

So, I suppose I now have a fresh set of eyes to look over the house and the projects I have started (read as: NOT FINISHED). I will be making a new priority list and endeavor to start marking off the tasks ASAP, because like all home owners, the task not-yet-started is infinitely more sexy than the one that stares at you unfinished for months...and I DON'T need any more of those.

In no particular order, here are a few of those:
- install door hardware on back door
- finish installing last ~25 sq.ft of hardwood flooring
- install toe plates for new wood floor
- prime & paint plaster walls in dining room
- strip paint from built-in bookcases & china cabinet
- sand wood trims, rails & built-ins in living and dining room
- shellac all that wood (and find another source of quality shellac)
- replace 8 mini-lites in entry door with beveled glass
- replace plumbing with copper tubing

My wish list is actually infinitely longer, but this would quell my angst for some time.

Drama-mine

It's been a month since our 3yo's heart surgery began. Last week, she was able to come home, not so much because she was doing better, but because she was doing worse staying in the hospital. With so many alarms, nurses, doctors (& residents) "messing" with her, wagging needles and probes about, her anxieties hit a threshold and she began to do worse. After we bargained to get her home and recover in the comfort of her home, she started to do well again...until this past weekend.

By Sunday, she had developed a 102° F fever, was overcome with fits of coughing and her Oxygen Saturation levels dropped. We took her in to her pedatrician, who deferred to her to her cardiologist, who had her admitted into the Pediatric Cardiac ICU discharge wing, where she was moved to the full PCICU. This, by the way, is at her former hospital where her former surgeon commands. She tests positive for a bacterial infection somewhere about her chest, and the threat of another open heart surgery looms overhead.

The akwardness of facing her former doctor had been palpable and complicated matters, and with this possibility of another operation, she is being moved yet again to Stanford...where she undergo another battery of testing and whatnot. We feel naueous.

The Girl is Alright

Michaela, our 3 year old with a congenital heart defect, had a good heart surgery last week at Stanford. Amazingly, they were able to perform this procedure without putting her on bypass, and without lowering her body/brain temerature to ~16°C!!! This has made an enormous difference on her recovery, which seems to be progressing along swimmingly.

They were, however, suprized to find an infection that had been "simmering away for the last 2½ years", encased within some scar tissue. This was on an abandoned Gore-Tex shunt that joined her right ventricle to her pulmonary artery that was left inside after her second heart surgery. In other words, it had been contaminated by her previous surgeon!!! Had this inflamed and burst it's cocoon, it would surely have been fatal for her, and it could have happened at ANY time.

Of course, there are a number of complications, like having all her IV-sites blown, and a possible temporary or permanant vocal chord paralyzed, and still having oxygen saturations in the 65-70% range, rather than the upper 80's (you and I are at about 100%...give or take). But it is still early in the recovery process and she looks marvelously well. Very little swelling and warm hands/feet for the first time in her life. Here she is after a visit from Grandma.

2-chamber heart

No house was harmed in the making of this post. Instead, we spent all day with our 3 year old, Michaela, as she underwent a battery of tests for Pre-Op at Stanford's Lucile Packard Children's Hospital. For those of you who are unaware, Michaela was born with a serious congenital heart defect, Hypoplastic Left Heart Syndrome. This is where the left ventricle doesn't develop in utero, and therefore the aorta never fully develops. This is the part of the heart that distributes the oxygen-rich blood to the body, and should be the largest and strongest part of the heart.

We found out several months prior to her birth, and were given 3 options:
- Heart Transplant
- 3-Part Surgery
- "Compassionate" Care.

The later option means you take your child home without medical intervention until they expire 2-10 days later. Until about 20 years ago, this was the only option. The former two options became available in the early 80's. Baby Fae was one of the first infant transplant recipients, although she lived only a few days. We, however, chose the 3-stage surgeries for our precious daughter, and pray every day that we made the right decision. It means that she will live with a 2-chamber heart, and that heart would have to work twice as hard for her.

Her first operation, call the Norwood procedure, was performed at 4-days old and the second stage, called the Glenn procedure, was done at 4-months. I could write reams of copy on all that has transpired through those days, but I shall refrain. Instead, I will share this: We have decided to move her surgical services from her previous hospital (UCSF) to Stanford for another mini-reams-worth of reasons.

She isn't yet ready for the 3rd stage, called the Fontan, where they complete and close the 2-chamber heart system, and so an additional heart surgery is needed. The issue is to open up the bottleneck in her aorta where the completely reconstructed arch meets the existing transcending aorta. The pinch you see at the top is caused by scar tissue that just wouldn't grow with her. Angioplasties are just not effective on this. Unaddressed, it would force undue pressure on the heart, valves and lungs.

She has this new proceedure planned in the next 2 days. Of particular concern is that she will be on bypass for a signficant ammount of time, and the "goods" are in a rather tricky spot to get at. She is also old enough to understand what is going on.

Although the prognisis is quite good, it still scares us aplenty, and she could certainly use your prayers. So if you sincerely wish to know more, email me and I would be happy to answer any questions and invite you to her care page we have set up. Otherwise I plan to leave short update posts on this as it progresses.