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.

Rejection

I did not have a good feeling about labs yesterday, and unfortunately I was right. We had an appointment with Dr. Gillis Friday morning that revealed one of Thatcher's liver numbers was elevated - indicating likely rejection. Thatcher is also getting his molars and gave us a scare last week with a low grade fever. He, Amelia, and myself have colds and have not been sleeping well. All this to say, things have been a little off for Thatch lately.

We are very disappointed at the likelihood of rejection but have the weekend to prepare for next week. We have repeat labs Monday and an ultrasound. If his labs are still elevated, we have a biopsy scheduled for Tuesday afternoon which will determine if it is actually rejection. He will stay over night in the hospital Tuesday night, and if the biopsy determines it is in fact rejection, we will be there for 5 days on IV Prednisone and meds to treat the rejection. We have not had a biopsy before. He will be put under for this and a needle will take a very small portion of his liver to examine. However, he is not to eat before the procedure, which is always awful.

Smelling Mommy's anniversary flowers

I was slightly comforted by Dr. Gillis' reaction to the elevated numbers. It is concerning, and not at all fun, but this is an expected part of transplant. 80 percent of pediatric transplant cases experience rejection. I suppose we wish we had already had our 1 incidence early on, but that is just not realistic. We knew rejection was part of the transplant process, but it is still scary. The good thing is that this is treatable and manageable. Maybe one of the bad parts is that we have to start Prednisone again as we enter into flu season/the holidays (Prednisone is used to further suppress his immune system making him more susceptible to illness).

Between the drool and the snot...his shirts have stayed wet lately

As his mother, I'm full of worry, but it is my job to be strong and take care of him. One of the most important lessons I have learned through this process is to stay calm and take it 1 day at a time. It does no good to borrow trouble and worry about the future. Pray, hope, and don't worry about the rest. I still plan for Thatcher to grow up, live a quality life, go to school, and for this to all get better every day/year we get further from transplant.

He likes to play with momma's necklaces

Fall

We saw Dr. Gillis Friday before last and were taken off 2 meds...yay!! I was especially excited about being taken off Prednisone since it is a strong medication with long term side effects. His labs were the same as last time, which is good. He is growing and gaining but still only in the 10th percentile for weight and 25 percentile for height. We get repeat labs the 22nd, exactly 6 months after transplant. We also get to drop another medication that day which he has taken since his diagnosis. This will leave us with a grand total of only 6 meds!

Future Doctor...he seriously wears this on his own all the time!

I get this view alot!

Life in the Link house is the same as usual. Pretty boring but working every day to be grateful for how far we've come. I love this time of year, but just yesterday it hit me that this time last year we thought our baby boy was perfectly healthy. We had no idea our lives were about to be turned upside down. Thatcher's 2 month checkup was on September 23rd 2010 and his Kasai procedure was the 27th...definitely the worst time of our lives. BJ and I both agree that diagnosis and all the unknown has been the worst part. Luckily, we have fared well, and I wish I knew then what I know now, but the doctors really could not be certain if we would be so lucky either. I wish I had known I had his little golden ticket tucked in my right side and that transplant, while certainly not ideal, has been Thatcher's best chance at a quality life.

I pray everyday that Thatcher continues to heal completely, lives a full life, and gets off his medication one day. He is such a funny guy. He doesn't talk as much as Amelia did at his age, but he lets you know what he does and does not want with his own set of points and grunts. He loves water, bath time, and the toilet (putting things in and taking them out!). He's walking everywhere and likes to climb things...pretty typical boy I think. There really is so much to be thankful for including a much better fall 2011!!

Go Vols!...(funny picture, Amelia likes to hide at the door before people come in)

Update...better numbers

Thatcher's last set of labs were better and trending down. We return to the liver doctor 1 week from Friday, September 9th. Thatch also had his 1 year check with the pediatrician and a dermatologist appointment in 1 day last week. He was prescribed a cream for his rash and it is getting much better. He has sensitive skin and the prednisone was making it worse. Hopefully he'll get off Prednisone soon and not need the cream.

Been meaning to post this sooner, but not really much else going on, luckily! We joke that labor day is coming up and since Thatcher doesn't have the best track record with holidays we are somewhat nervous he will be admitted. No indication we are headed in as of yet.

August Update...More Labs

Just a quick update on Thatch for those who may occassionally check in to see how he's doing. We've actually been back for repeat labs since my last post. We didn't get the 1 month off as I'd hoped. In fact, we'll be going back for labs Wednesday to get another check. I spoke too soon after our last visit. Thatcher's labs weren't quite perfect so they are keeping a close watch.

There are 3 liver labs we watch for rejection (among other labs they take that measure various other functions) the AST, ALT, and GGTP. 2 of these were in the proper range but the AST was just slightly elevated both times. Another lab we don't normally pay attention to (Alk Phos) was also up. The Alk Phos is a liver indicator but it is also elevated when children are growing (for instance, it's usually high in kids going through puberty). This along with a couple other things have raised the doctors eyebrow a bit so they are watching him. I have been told this is not considered rejection, but they did not want to go a whole month without looking at his numbers just yet.

Honestly I am a bit worried (as his mom this is my job) but am trying to not borrow trouble and continue to give him the best care I can. Best case, he is growing and outgrew his dose of Prograf. They increased his dose slightly so I hope this has corrected the AST by Wednesday labs. I don't like to go into worst case unecessarily, but there is a potential for a liver biopsy if they can't figure out what is going on exactly. I've been praying for good numbers and no biopsy.

Thatch has also had a rash on his face for a couple of weeks now. I'm not too concerned, and I attribute it to his new teeth and all the drool from his molars coming in. Otherwise, Thatch is doing well. He even took his first 4 steps on the 9th! Our whole family was around cheering him on :).

Please say a quick prayer Thatcher's labs are good this week.