This Heart Broken

We had a great time in Spokane and the drive wasn’t too bad; the only problem we experienced was Zoe refusing to eat during the car ride because there was just too much to look at.  The drive back on Sunday was LONG but we went over the pass at the best possible time in regards to weather and there were no backups, we just had to drive slowly.  The one thing I discovered is that Zoe doesn’t take too well to change.  Her sleeping got WAY out of whack and so did her eating.  I actually expected her to be more flexible seeing as she has been hospitalized three times.  I’m a little worried she may have lost some weight because she’s dropped significantly in her food intake since Saturday.  I thought being home would kick her back into gear but today was not good.  Her sleeping schedule came back right away but she seems to be on a bit of a hunger strike.  She’s hungry and shows it but when I try to feed her she arches her back and screams.

Noah also shocked us because he asked to go home every day we were in Spokane (usually at bedtime); I guess we’ve been so homebound he got kind of attached to the place.  It was a little sad for me because he used to see my mom’s house as kind of a second home but he hasn’t been there in so long he wouldn’t sleep in his bed there.  All in all I think he enjoyed himself and he was so excited he ran around the house screaming when I told him we were going to Spokane.
While in Spokane Paul and I got to go out twice alone!  It was heavenly!  Zoe still won’t take a bottle but she will take milk from a medicine syringe; sometimes you’ve got to be inventive   I’m looking forward to some more freedom with this discovery.

Good night all!

-Jen

Real quick update….

Had another appointment today but we didn’t have to do labs!! Her immunosuppressant level in her blood had stayed steady for two weeks so we were able to take a week off.  Her echo looked good; her heart still isn’t back to “normal” but it is getting better.  Her ezcema is so bad that they decided to put her on an oral dose of prednisone for 5 days and then do topical cream.  It looks like this is going to be a real struggle for her.  WE HAVE TRIED EVERYTHING and are getting new suggestions all the time (thank you all who have contributed).

They checked her CMV scores last week and they were up slightly but still under 1,000 so it’s not too concerning.  The prednisone will probably cause them to rise also.

We have been given the okay to bust out of Seattle for Thanksgiving.  We will be hibernating at my mom’s house and still isolated but a change of scenery is just what the doctor ordered.  I will only have to go in for labs next week since I begged to go out of town

Zoe had her first cold this week and did better than me!  No infections and it seems to be all but cleared up.

Noah went with me to clinic this week and they gave him his flu shot since his pediatrician’s office had a shortage and couldn’t spare any for him.  What a champ!  He didn’t even cry.  Happy Thanksgiving to all!

Yet another appointment at the Heart Center.  Her echo looked good and her blood pressure was at a level that allowed them to mess with her meds again.  They are gradually increasing one medicine (captopril) while gradually decreasing another (verapamil).  They also are going to start weaning her off the lasix and are hoping she’ll be completely off of it by the first of the year.

This was also our first trip back to the lab to have blood drawn since she got her central line.  This may seem bizarre to most of you but we have her med schedule set based on the work schedule of our favorite phlebotomist.  Hector is the only one in the lab that can get blood from her with relative ease. Drawing blood from little babies is an art and you either have it or you don’t.  THANK YOU HECTOR!

Zoe’s eczema is still out of control and we are probably going to try a topical steroid to reduce the inflammation.  Her poor face is covered; just when I think it’s getting better it flares back up.  Thanks for all the advice people have emailed me with….I’m trying it all.

Oh, and she gained weight again!  Another 6 oz this week; she is almost in the 3rd percentile for weight now.  She is also 22 inches long (about 5th percentile for her age).

Tomorrow she will get her first shot of medicine to reduce her risk for RSV this winter and next week she will start her immunizations at the pediatrician’s office.

That’s all for now!

I’ve spent a lot of time thinking lately about where the summer went. It seems to be one big blur; autumn leaves litter my back deck and I can’t remember but one day of gazing up into their green canopy. I routinely leave my house with a 2 1/2 year old and no coat because it doesn’t dawn on me that it is now cold. I look in the mirror and am startled at how long my hair is until I remember it’s been almost 5 months since I’ve had a haircut. As crazy as it’s been being “in and out” of our house (notice I don’t say “in and out” of the hospital) I have recently been reminded how smooth our transplant has gone.  It’s easy to compare our situation to other people; families with completely healthy children but for every family that seemingly has more there’s one that has less. I think of my friend Erika who I met in the NICU at Children’s and whom I hope will always be in my life.  Her struggles are barely beginning and if not greater, are at least of a different quality. I think a lot about how bad it could have been; the families we got to know who’s children didn’t make it and although we don’t write much about them, I constantly think of our donor family.

I’ve been meeting families. Families at the heart clinic getting their 3 month checkups with their “transplant kid” toting their feeding pumps and their stories. Many of these families were hospitalized for four or five months straight. These are the families the coordinators describe as “they had a rough go at it”. And it’s not just getting their heart to take; when your baby’s heart doesn’t form correctly it seems to cause random malfunctions elsewhere. Feeding issues seem to be the norm even a year after transplant. One family reminded me of how sick Zoe could have become from the CMV; their boy was on a ventilator for a month and he was three at the time. These families had amazingly slow progress to deal with but you should see their faces when they describe their children who are one or two years post transplant; total awe like they’re staring at ghosts who never should have been there. With their grins and laughter they tell me it will get better.

Zoe had her central line successfully removed this morning.  It was a long day but the procedure itself was surprisingly expeditious.  Yesterday I spoke with anesthesia and was told the procedure would take an hour and they would have to place an IV line in her.  If you remember, it took them over 2 hours just to place the IV line when the they put the central line in so we were planning for a long surgery and a VERY long day.  However, her anesthesiologist today told us the procedure was only a half hour total and we dialogued about even putting in the IV line at the beginning of surgery which he eventually decided not to do.  They didn’t even need to put in a breathing tube!  (By the way, the IV line is usually placed at the beginning of a surgery so that if something goes wrong during the procedure there is an immediate way to administer medications that may be necessary to stabilize the patient.) The procedure ended up taking barely a half hour and we weren’t expecting to see her for another hour after she came out but about 10 minutes after they paged us I heard a very familiar cry and a nurse whisked her into our recovery room because she was awake, hungry and wanting mom.  We then had to stay in the recovery room for four hours to make sure she wasn’t having any problems from anesthesia.  Paul ended up staying with us the whole time because for those four hours I would have been unable to leave and get food (or even have food in the room) or use the bathroom.  We’re home now and so excited to have a baby with no tubing coming out of her for the first time!  Everytime something is removed I feel even more  like she’s my baby and less that she’s a medical specimen. This weekend I plan to clean out our medical cabinets (yes, plural) and get rid of all the supplies we no longer need; we’re slowly reclaiming our house (and maybe our life?).

We had a fun Halloween. We went trick or treating around a friend’s neighborhood and boy was it cold! Noah had a great Thomas the Train costume that Paul built but he refused to wear it when we went out. Last night I told him that the nurses at Children’s asked what he was for Halloween and I told them he was Thomas the Train. He told me he wasn’t and I asked if that was because he didn’t put on the costume. He looked at me and said, “I’m not a train; I’m Noah”. Glad we got that cleared up.

I made Zoe a little surgeon’s outfit which was hilarious. She slept all the way through trick or treating but wore it to the hospital yesterday and we got a lot of laughs. Check out the pictures at our flickr site

Zoe had her clinic appointment yesterday…..there are a few things to report.  First of all, she has lost the slight murmur she’s had since the transplant.  When they transplant the new heart it puts it under a great deal of stress which causes swelling to occur; it takes a considerable amount of time for that swelling to go away.  One of the byproducts of the swelling in her heart was a slight murmur which Dr. Boucek discovered is now gone.  It has also been nearly three months since her transplant and her severe immunosuppression is starting to end.  For the first three months they attempt to keep her main immunosuppressant drug at a very high level but now they will begin lowering it.  I’m not sure how low the level will eventually be set but she will always have to be on it.

She also will have her central line taken out tomorrow morning so tonight she will receive her last dose of ganciclovir!