Transplant BBQ
Yesterday we went to a barbeque for families from Children’s heart transplant clinic. One of the mom’s organized it and the clinic advertised it for us. We met at a local park and I think 8 families came. The kids varied in age but most (except 1) were within 3 years of transplant. It was fun to see all those kids running around and looking so normal you couldn’t tell which ones were heart patients and which were the siblings. We were able to eat good food, share our experiences with other parents and hopefully strike up a few new friendships; many of these families I have met in passing in the waiting room but had no time to connect with them. Two things really stood out to us in hearing other family’s experiences; it was amazing how many of these children had one (or both) parents in the medical field and 2 or 3 of the children received transplants as a result of contracting a virus that destroyed their heart. I forget Congenital Heart Defects are not the only reason children need transplantation; all contacts through the heart center have been with parents whose children have CHD’s. These families went years with perfectly healthy children and then one day they got sick and because of a genetic predisposition, their hearts failed even though other members of their families came through unscathed.
Anyway, a good time was had by all and hopefully it was the first of many get togethers. Thanks Felice.
Procrastination
I like to think I’m on top of things. I like to think I kick ass when managing Zoe’s care. And then……I’ve needed to find a new pediatrician for a long time. Everytime something would happen at her clinic I would give them “one more chance” but after some events surrounding her bladder infection it became apparent I need someone else in charge of her care. Maybe someone who will actually take control of her care instead of leaving a mom with absolutely no medical experience to fake it. I realize it may be unrealistic to think I’ll find a pediatrician who will know when she’s in the hospital, check up on her, and let me know when she needs follow up with specialists; we’re not in Spokane anymore where your pediatrician gives you his home phone number (miss you Dr. Maixner). I would like someone who is competent; calls when they say they will, really calls Children’s to find out if a medication is appropriate for her. Being in Renton, my choices are not very good. I could drive 45 minutes South to a doc who has 2 other transplant patients, I could drive 40 minutes North to the pediatrician I really want who I have a gut feeling would be excellent. Maybe he would even come to the hospital and check on her since he’s only 10 minutes West. Or I could chance it and try another pediatrican that is 15 minutes from our house with ample parking. Or I could continue to do nothing which works right up to the point when she needs to be seen for something. I think I’ll stick my head in the sand for a few more days.
Roundup of the week
Last Wednesday’s cardiology appointment went well. Echos continue to be interesting since we have to try keeping her still for about 20 minutes. Zoe spent the time playing with the nurses and showing off her new skills while I talked with Dr. Boucek. We went back over her biopsy results; there had been some question later about one section of artery and I think they will be keeping an eye on it but Dr. Boucek was not convinced there was thickening. It’s not great news there was even debate on this but I was so thankful there isn’t obvious thickening yet. It’s hard not getting definitive answers; a permanent state of limbo is where we live. Routinely, 6 months after the biopsy a stress test is done and Dr. Boucek thought if there was any problem with that artery it would probably show up on the stress test.
Lots of med changes lately and her cyclosporine level still isn’t where it’s supposed to be so labs continue every two weeks. In three weeks we will be switching her off Cyclosporine to Tacrolimus and trying monotherapy with that specific drug. There are some definite advantages to this drug but they’ll watch her kidneys very carefully but one disadvantage is that it is not liquid. I laughed so hard when they told me that administering the drug means taking a capsule, breaking it in half and pouring the contents onto her tongue. I guess there are some tricks you can try like mixing it with water but it has to be done EXACTLY the same way every time.
Yesterday Zoe resumed physical therapy; she continues to favor one side and so I have new exercises for her. However…….we are done with physical therapy unless she’s not walking by 18 months. I don’t worry too much about that; I just have to get her left side stronger and I think she’ll be willing and ready.
We leave tomorrow to go camping! Have a great week!
All is well
Her bladder test went well (the results were normal) but Zoe DID not appreciate the experience. The nurse kept “encouraging” me to try and distract her because she was screaming. I kept wondering if she was noticing that everything I handed to Zoe was immediately thrown! The girl is not dumb; silly toys or a binky are not going to make her forget you’re shoving a tube up her yu-who. The procedure was all of 10 minutes maybe and we’re back home. Noah is actually napping (or maybe just passed out from the heat) and Zoe is happily tearing apart a magazine on the living room floor (Grandma Carol-bet you didn’t realize your gift was also for Zoe’s entertainment!).
Whole new perspective
Zoe has been thriving the last week or so. No problems with fluid intake or eating plus she figured out how to pull herself up to standing. She’s very excited. Today she managed to stand up in front of the DVD player, turn it on and open the tray. This, of course, pushed into her and so she had to grab on to keep from falling. Hmm.
She’s also very excited about her walking toy; when I put her on the carpet she can take a couple steps with it. I suspect she’ll be walking soon so maybe we can get rid of physical therapy. I’m taking her in next week for another assessment and we’ll see then what the recommendation is.
This week it is HOT here. 90+ in Seattle is not very common especially in July. We’re up at the hospital for appointments two days this week and I can’t say I’m too sad about it; all that lovely air conditioning. Tomorrow she goes in for her VCUG which is just a fancy way of saying they’re going to check out her bladder and make sure she doesn’t have any anatomical issues that caused her bladder infection (all young kids who get a bladder infection are subjected to this test). On Wednesday she goes in for her cardiology appointment; they’ll be going over her biopsy results in depth with me.
Have a great week and for those of you in the West….stay cool.
Up from here
Zoe is one today. Hard to believe. One year ago tonight she was in the NICU with dad and I was hell bent on healing up enough to get out of the hospital. Jen Zug was with me that night and although I have few clear recollections (Morphine is a funny drug), I do recall, on possibly the worst night of my life, laughing with her as if we were at a slumber party and that is a gift.
The year has been hard, to say the least but we are immeasurably grateful to everyone for your support and prayers; we could not have survived this without our friends and family. They say the first year is the hardest and we are relieved it has passed and we can move forward. There are new things to learn; how to give her as normal a life as possible; how to be the mom and dad who surround our kids with joy so they find it easy getting back up when derailed by illness or anything else.
It feels like another new beginning as we come to the anniversary of her birth and transplant.
In the words of one of my favorite artists:
Retrospect is suspect-still it’s been a heck of a year. Well I’m sorry about the message you didn’t have to lean on fear didn’t have to let your head go down cause things are looking up from here.
