Behind the Curtain - Part I

Here it is CHD Awareness Week again, and I have been giving some thought about what to write. Last year I posted each day about each of Tim’s surgeries, but I feel like that chapter has closed. Tim’s heart transplant was indeed a gift of life, and I worry less about his heart, but more about things I could have never predicted.

I thought this year I’d try to answer the question we hear so often, “so now what, is he just normal?”

When Tim was waiting for a transplant, the nurses and doctors told us that a transplant is not a cure, it’s just trading one chronic medical condition for another, the difference being that with a transplant the patient has a much better quality of life. For Tim this is 100% true. His diseased heart could not support him very much longer, and he was lucky, he received a heart that was a perfect match for him.

Tim looks like an average 8 year old. He is definitely on the small side, but can physically do anything he wants to do. On the inside, it’s a different story. For us, the cardiology part is familiar – daily medicine, lab work, and frequent check-ups. I think what has surprised us are the new specialties we must become familiar with - neurology, nephrology, neuropsychology and now infectious disease.
Following his transplant, Tim had a brain bleed, which has left him with a seizure disorder. There seems to be no specific trigger for them, and they are pretty well under control with medication. Still, he has been rushed to the hospital 3 times after becoming unresponsive. Also, the medicine for his seizures is tough on his kidneys, so he sees a nephrologist to make sure his kidneys are healthy. We have been fortunate that despite his immunosuppression, Tim has been able to weather the usual colds that float around school, but this fall he contracted c. diff, a nasty intestinal infection that is not a danger to you or I, but quite dangerous for Tim. He was treated and recovered, but seems to have had a relapse in the last few weeks. The result of this is he lost about 10% of his body weight, and has felt much less than 100%. Additionally, the medicine to treat this infection interacts with his transplant medication, meaning he has to have blood draws at 7:00 a.m. every several days. We are seeing an infectious disease specialist this week to figure out a new treatment plan.

Only the shadow knows...

We've been quite delinquent in posting here.  Our last post was six months post transplant, and now Tim is very nearly SIXTEEN months post transplant.  How's he doing?  In a word - wonderful!

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Medically, things are pretty stable.  He has shown no sign of rejection and has weaned some of his medications.  We did have a scare this summer when he had another seizure, but after an overnight stay in the hospital, he's started taking his anti-seizure medication again and probably will take it for a while.  Seizures are hard things to figure out.  In Tim's case, the part of his brain that bleed after his transplant is just sensitive, and it seems that being overly tired or worn out triggers his seizures, so we're doing our best to avoid that.  During our last visit, his echo showed a shadow over his heart, and a repeat showed the same thing, so that's our next issue to follow.  Chances are it's nothing, but Tim will have to have an MRI to give us more answers. 

 

On the kid front, he's grown a lot.  I'm not sure just how much, but several inches and several pounds.  He spent the summer making up for lost time - learning to swim and ride a two wheeler.  In September, Tim turned 7 and started the first grade.  This fall he's been busy playing soccer.  I'm going to try and catch up on posts, and share some more pictures of all the fun stuff we've been up to.

Six months!

Believe it or not, it has been a little more than six months since Tim received the incredible gift of a new heart, a second chance at life.  Yesterday he went for his six-month heart biopsy.  The day went quite smoothly.  We made all the regular stops - blood draw, ekg, cath lab.  Tim was in a pretty agreeable mood.  Not too chatty, but content to play his iPod and watch movies.

The results of the biopsy came back today.  It was not a perfect 0, but pretty close.  The result was 1A/1R which indicates minimal rejection.  It is not uncommon, and it does not require any additional treatment.  The other factors they look at - heart pressures and BNP - were good, so unless something changes, we will not need to see cardiology again until mid-March.

Next up we do have appointments with both the Renal Department for a check up on Tim's kidneys (they are fine, we just want to keep them that way), and in February a follow up with Neurology.  Hopefully we can start to wean Tim off of his anti-seizure medicine then.

Today was Tim's first day back at school since winter break, and he had a good day.  It has taken some time, and patience on his teacher's part, but Tim seems to have found his place in school.  He is happy to go, and trying very hard to learn all his letters and start reading.  We are very proud of the progress he has made in the last few months.

It is incredible to think where we were six months ago, and even where we were a year ago.  Last year right before Christmas, Tim spent a week in the hospital getting his pacemaker repaired.  This year, he was able to celebrate with friends and family, his pacemaker no longer helping him stay alive, but instead sitting in a drawer.  As his parents, it is so wonderful to see the transformation.  So far, 2013 is shaping up to be a great year for Tim, and the rest of us.  We hope it treats you well too!

Thanksgiving

For the first time ever, we traveled for Thanksgiving.  We had a trip to Disneyworld planned for last June that we had to postpone after Tim was put on the transplant list.  There was no school the week of Thanksgiving, so we took the week and drove to Orlando. 

This year we are especially thankful that Tim is still here, and that his health is greatly improved.  He didn't walk all the time at Disney, but he walked more than ever before and had a lot of fun.  This was Rosie's first time, and she quite enjoyed a lot of the rides in between throwing herself to the ground as toddlers are wont to do.  Lou discovered a new "quest" they have going on there where you must collect cards and visit different areas of the park.  All in all, I think each of them had a good time, and we all benefited from a week away from home, work and school.

Below are a couple of pictures of Tim from our trip:

Waiting for the Toy Story ride

On the spinning tea cups

On "safari"

With Daisy Duck

Onward and Upward

It's been a busy couple of weeks.  Last week, September 24th, Tim started kindergarten!!  He was very excited and nervous to be joining his class in school after a month of home bound tutoring.  He went for a half day the first day and then asked to go all day.  So far he's been doing quite well.  Like many kindergartners, he is adjusting to the new routine and rules, but he is enjoying it AND he says that PE is his favorite class.  This from the boy who would not walk a block this time last year.  It is good to see him being a "normal" six year old.

Today he had a follow up appointment with cardiology.  Everything went smoothly and is moving in the right direction - up!  He was able to discontinue two more medications, and his echo and EKG looked good.  He will have another biopsy at the end of the month.  He has lost some weight, but not enough to be concerned about - it is probably due to his higher activity level and growing.  The doctor's prescription - a bowl of ice cream every night!

The hospital also asked Tim if he was interested in being a featured story in their Superior Street windows.  They are telling the stories of some of their "firsts."  Tim was the first heart transplant, and he decided to bring his hedgehogs to be part of his story.  His family of hedgehogs has been growing and they have been with him through many of his hospitalizations.  Today while we were there they took some pictures and work will begin on the window soon.  It should be up around the beginning of November.  Here's a preview of his little friends - Hedgie, Reggie, baby Reggie, and Veggie.

Now I am six....

A long overdue update will follow, but today's big news is that Tim turns six years old today!!  What a journey it's been.  Since he is still under quarantine orders, there will be no party for Tim just yet.  Instead we spent the day checking in with neurosurgery and having lunch with dad at his office.  We're hoping this year will be calm, and just filled with normal six year-old milestones - learning to read, riding a two wheeler, etc.

As for that update -

Medically, Tim is doing very well.  His last biopsy (8/29), showed no signs of rejection.  Neurologically, he has been fine as well.  The EEG he had last month showed the part of his brain that had the bleed was still "slow."  The doctor explained it is still healing, so he will stay on anti-convulsants for a few more months just to protect his brain.  We've been backing off on one of his blood pressure medications and he is doing well.  He's done with prednisone, and two other medicines that went with it.  He still takes a lot of medicine for a kindergartner, but it's manageable.

School started last week for Lou, and all the other kids in town.  We've been very lucky that Tim was assigned the same kindergarten teacher that Lou had, AND she agreed to be his home bound tutor every afternoon.  She has been trying to keep him in the classroom loop, and I think it will make his transition easier.  On that note, Tim has been cleared to go back to school as soon as his official 90 days are up!  He will be starting the week of September 24th, and while he might not agree, we think it will be good for him to be "normal" and get back into a routine with his peers, not to mention to exercise that brain of his!

We'd like to send out a HUGE thank you to everyone who has helped our family - be it with meals, childcare, emotional support, lemonade stands, garage sales, and donations of all kinds.  It has indeed been a very challenging summer for us all, but I really feel like we are on the upswing.  I'm not quite sure how our family would have survived this summer without the help of our friends, family and community.  THANK YOU, THANK YOU to you all.  Also, a tremendous thank you to the anonymous family that selflessly gave Tim the gift of life.  We will never be able to repay them, but we will try our best to pay it forward.

E-N-E-R-G-Y

We seem to be a little out of date here on Tim's blog, so here's a quick recap:

After an uneventful biopsy last Wednesday, we all got some very good news - the biopsy showed a minimal amount of rejection, the doctors assured us that it is quite typical following transplant, but nothing to worry about.  So, on Thursday, Tim (and the rest of us) were given the go ahead to leave Ronald McDonald and head home!  It was a major relief to each and every member of our household.

In the few days we've been home, Tim's attitude and energy have improved daily.  He is still typically Tim, telling me that he "doesn't do chores," and trying to convince us that he is incapable of doing simple things like filling up his own water cup.  Today though, he insisted that he run the two blocks to his grandma's house and is playing outside with his brother for the second time today.  It is fabulous to see him with so much energy.  The challenge now will be keeping him close to home for the next two months!

Tomorrow, Wednesday, we have another cardiology follow up downtown - blood work, EKG, echo.  With any luck, our update afterwards will be full of boring news!