December 2011

We did have labs again the first week of December that showed what have become usual results for Thatch - normal on 2 of the 3 liver indicators but a slightly elevated AST. They have not adjusted his medicine and I get the feeling we are low on the priority list right now, which is a good thing.

In the meantime, we are trying to be germ conscious during this busy time of year. Our Thanksgiving was a bit untraditional in that we did not see my siblings and their children because they were all getting over upper respiratory infection and coughs. We really do have simple instructions for Thatcher's care - give him his medicine on time and stay away from sick people. It's a hard call sometimes, but we cannot knowingly be around sickness. It is the unknown sickness that is so difficult to gage, church, shopping, etc. We've all been praying for the family to stay well for Christmas. Even so, this first year post transplant will surely be the most difficult, and we are willing to make sacrifices.

He was so handsome in his little suit!

That said, I feel as though Thatcher has been around more people than normal the last several days and I'm nervous to discover a fever or the tell-tell "sick eyes" indicating that he caught something. If he remains well by Friday, I'll feel a bit out of the woods. Thatcher was a stand-by ring bearer at his uncle's wedding this past weekend, went to church with us Sunday, and ran errands with me yesterday. All relatively normal activities that for us involve alot of germ-x and making sure anything that he drops on the floor doesn't go in his mouth.

Daddy & Thatch wearing his Braves hat

One pooped flower girl

Like alot of people this time of year, I have alot of things to go do and struggle with the feeling that I'm putting Thatcher's health at risk. I reason that he does not get down, touch anything, and I wash his hands often throughout our trips. To catch an airborn illness you have to be pretty close to someone's face and carseat covers keep us from touching surfaces...is this enough?? All things that run through my head. I'm certainly not complaining! I simply share this to give a more accurate picture of life after transplant. What a much better life it has been!

Thatcher is 16 months old now. He's also black and blue right now. A jumping on the bed incident and trip in the hallway left his head and nose quite swollen. They're much better now, but I was afraid he had broken his nose at one point. He'll let you know what he wants, which I often have to translate - "coo-coo" for "Blues' Clues", "cacka" for "cracker", etc. Christmas decorations have been interesting. Like most parents with children this age, the bottom third of our tree is not really decorated, almost all ornaments are plastic, and Thatcher thinks it is filled with "balls!" he likes to throw around the living room.

"Balls!"

He and Amelia love to play together, and we are super excited about Christmas this year. The whole concept of these wrapped presents under the tree is baffling to Amelia. She thinks it's everyone's birthday present and wants to makes sure everyone will share their presents with her. I've explained the meaning of Christmas and that we are waiting until Christmas to share the gifts. We even have a paper chain to count down the days, but we worked so hard on it that Amelia did not want to tear them off at firts, ha! She will be 3 the first of January and is so excited about her birthday party...um, a Tangled party. We'll see what I come up with :). I'm more nervouse about having alot of people in our house in the winter time.

We continue to pray for Thatcher's healing and for a healthy family. We are so blessed to be together this holiday season...not in Pittsburgh (as I know many families are up there in that Ronald McDonald house right now). God has taken care of our family beyond what we could have imagined. Merry Christmas!

One of Pittsburgh nurses that took Thatcher's blood pressure everyday sent us this Pirates outfit...how sweet!! He wears it even though it hurts his dad's feelings a little being such a Braves fan :)

Happy Thanksgiving

We did get to come home Tuesday late afternoon. They took a few extra cultures that came back negative. We had repeat labs Thursday morning that were slightly improved as well. The doctors are trying to figure out what to do next with Thatcher's medicine, but I'm getting the feeling that they are thinking his medicine is running high. I've just been told it is extremely hard to reach a target level with a baby's metabolism and unpredictable growth and eating patterns. We get 2 weeks off and will get repeat labs the first of December to determine any med changes.

All that to say, I think I'm ready to jump up and down just a little bit at Monday's biopsy results! Since they haven't found anything worse than rejection, I'm very glad we are not on prednisone and his liver is safe and sound right now :). We are also not in any extra danger of being admitted through the holidays or anytime soon. Praise God!! I know He knows what is best and we just have to have faith...in the good and scary times.

Biopsy

Today has been a LONG day. Thatcher is finally asleep and I'm heading there myself. Since today was a scheduled procedure, I did not realize we would be waiting around so long...why was I surprised! I was so worried about Thatcher not being able to eat before his procedure, but this did not seem to bother him tremendously, thank God! Every hospital stay is just a little different as Thatcher grows up and he was much easier to entertain yet much more active this time.

Thatcher was poked 3 times trying to get the IV even though he was given a small dose of medicine to make him groggy. This is heart breaking. I'll spare Thatcher the future embarrassment, but we do have his little dopey time on video...hilarious :) - not sure why kids on drugs are so funny!! Once they finally got him under, the biopsy went as expected lasting only about 30 minutes. Since the liver is so vascular, they place the needle using ultrasound technology and get only a small cylindrical piece - about the width of a paper clip once unfolded. After Thatch woke up, we were in holding for aound 5 LONG hours.

Long story short, we were told the biopsy showed no signs of damage to the liver or inflamation meaning there was no rejection. I knew not to jump up and down since Thatcher's liver function numbers are not doing what they are supposed to. However, we are not starting Prednisone and may go home tomorrow pending the results of his ultrasound. I'll post an update once we have a better idea of what's going on. In the meantime, Thatcher's labs were better this evening and I'm praying they figure this all out soon and it is not any worse than rejection.

Rejection

Thatcher's labs were not good yesterday, indicating likely rejection. Pretty much all of the numbers were elevated significantly. This is always a punch in the gut to see when I pull up his labs online. We are scheduled for a biopsy at 9AM Monday morning and should know if it is in fact rejection by that afternoon. If so, we will begin IV meds to treat him over a 5 day period. We will then come home on a steroid taper that will likely last through the holidays/flu season meaning Thatcher will need to be even more careful about germs while his immune system is "extra" suppressed.

This is the anticipated course of action so we will make plans accordingly and deal if things happen differently. It's hard to be positive sometimes, but I'm so thankful they can treat him so effectively. I'm also very thankful that Thatcher is not in any pain and will likely have a great weekend. I'm also super happy that we should be dishcarged and out for Thanksgiving. As always, thank goodness we live so close to Vanderbilt.

That said, please keep our family in your prayers. Thatcher will be put under anesthesia so cannot eat after midnight Sunday. Once the procedure is over, we will likely just being hanging out all week for the IV meds. Being in the hospital is always trying. I miss Amelia and hate sleeping there with nurses coming in and out to check vitals through the night. The high dose of Prednisone at first can make the kids a little "kooky" or moody but will hopefully taper off as the dose reduces. I'm also kind of dreading keeping Thatcher in his bed while he's hooked up to the IV and couped up in 1 room. At least we have the weekend to prepare and maybe this time next week this will all be behind us and we'll be coming home.

Little Stinker

Thatcher was a skunk for Halloween

When asked how Thatcher is doing lately, I reply that he is doing well, which is pretty much the case. There is still 1 lab they are watching closely, and if it does not drop within range soon we will need to do a biopsy. As always, he makes me nervous, always worrying about catching a bug, whether we should take him certain places, etc., but we try to enjoy our time at home together and make the best decisions we can about going out.

I was supposed to be Bambi along with Flower the skunk and Thumper the rabbit

Of the 3 main liver labs they watch (AST, ALT, and GGTP), Thatcher's AST has been hovering above range since the summer. The other 2 numbers have been good except for the bump last time. That said, according to the doctors, the AST is not as liver specific as the other two numbers. Meaning there are other factors that can affect the AST. I'm sure it gets even more complicated than this, regardless, it's been in the 50s and 60s and needs to get to 40 or lower.

The coordinator also commented that, unlike other organs, the liver offers more blood indicators than kidneys, heart, or lung so it does not have to be biopsied as often. In other words, Thatcher's bloodwork says alot about how his liver is functioning without having to actually look at the liver tissue. I am greatful for this. That said, this AST seems to have the docs a bit confused so they may have to go in and see what's up. They adjusted his medicine (reduced it actually in case there was some liver toxicity going on from his dose) to see if this would get the AST to lower. It does not necessarily mean it's rejection, but I'm more than anxious to get labs Thursday. Thatch once again has the signs of a small cold so I'm not sure if that will bode well for his liver function numbers...we will see tomorrow.

As always I'm praying that Thatcher is completely healed and he gets to live a very long quality life. I guess I'm kind of worried this week, but we have gotten better at going about our lives and waiting for something to react to instead of just worry. We were told early in the process that this would be a lifestyle. I guess this is what they meant. I remember when they told us that. I did not want this to be a part of our lives, but having come to terms with many things, I think we get to live a good life...especially compared to what it could be and what it was!

More than anything I want Thatcher to be healthy of course, but selfishly, I would also like to be home Thanksgiving and Christmas...just a small request :). We were in the hospital last Thanksgiving for elevated white blood counts. We have not been admitted since July, and even if we were somehow in the hospital over Thanksgiving, I wouldn't go back to last Thanksgiving for anything (yet I may need to be reminded of this at times)!! Regardless of this weeks labs,there is so much to be thankful for this Thanksgiving - that's for sure!

Still Getting Better

Friday labs were still getting better so the plan is to hold off and get labs in a couple of weeks. A cold and/or virus can certainly cause anyone's liver numbers to jump around. Hopefully we'll get Thatcher well and get his numbers right where they need to be. In the meantime, we'll enjoy our time at home and being down to only 3 meds!!

Good news Tuesday

We did NOT have to get a biopsy today because Thatcher's liver numbers were significantly lower yesterday...yay!! We were both surprised and very excited. We had labs at 3 then an abdominal ultrasound at 4 that checked blood vessels, blood flow, and bile flow to name a few. The ultrasound lasted 1 hour and Thatcher was definitely over it by the end. The doctor called this morning to say his ultrasound was good, and we will hold off on the biopsy. He gets repeat labs Friday. We are not out of the woods but very hopeful.

Today is such a blessing. Thanks to everyone who is praying for us. I just felt the need to post the good news with the not so good news. I hope we have more good news Friday.