The Missing Piece

What an emotional roller coaster this entire process can be! We had labs Monday morning and man were we worried sick about these! It was a terrible lab draw with 4 sticks and a finger prick to get enough blood to also run some extra allergy testing. I was already emotionally drained from holding Thatcher through that 30 minute ordeal and it was only 9am.

As I mentioned before, the doctors have been concerned about what is causing Thatcher's liver numbers to go up and down. Granted, they are nothing compared to pre-transplant readings but not perfect at times. When the November biopsy showed no rejection or other damage/issues they began looking into other reasons for the fluctuations. After speaking with the doctor last month, a family history of thyroid disease was mentioned. (I have hypothyroidism along with almost all of my immediate family on both sides). Apparently there is a relationship between the thyroid and the liver. More importantly, there is also a correlation between the thyroid and another liver disease.

I was stunned and very upset upon hearing this. While rare (we've heard that before!!) the doctors wanted to cross off this other disease so they began watching his thyroid numbers. With thyroid disease so rampant in my family and his last set of labs showing his thyroid levels were borderline I very nearly lost it. I was so worried we were going to be diagnosed with another disease! I just didn't know if we could handle anymore.

These past 4 weeks have been spent in deep prayer and wrestling with trying to enjoy Thatcher and not worry unecessarily. It seems to be so important in the medical world to make sure you have all the pieces of the puzzle and explore all options. I commend our doctors for looking into this issue! However, we were so scared of what they may find, which was very stressful for both BJ and I. I guess we thought transplant would be the worst, that it would "fix" him, but now there was this other possibility of having to endure another diagnosis. As lab day approached we grew increasingly worried, anxious, and even cranky. I know we are supposed to trust in the Lord and his plan. He has our best interest at heart, and to even worry means I'm not having faith in his plan. Even so, I hate to admit it, but I've been scared at the Lord's plan for Thatcher and our family. He does know best!!

I still can't believe it, but besides good liver numbers, Thacher's labs revealed he has hypothyroidism, like me. Normally, (certainly nothing is quite normal with Thatcher :)) this would be upsetting news, but I felt nothing but relieved it was not worse. Having had hypothyroidism (a low or non-functioning thyroid) since about the 4th grade, I guess I knew I would probably have a child with this issue. However, I always thought it wasn't so bad and such an easy fix that I never let it influence my decision to have children. Still, poor Thatcher has had enough to deal with that I do especially hate that he has yet 1 more "issue."

This is not transplant related. While hypothyroidism is quite common, I don't think it is at all common in such young children. If Thatcher didn't live under such a microscope, they would probably have never caught this until symptoms began to show delayed growth and development. If untreated, hypothyroidism can affect liver function as well. He has a new pill to take every day, for the rest of his life, but there are no known side effects and it is quite small. We just crush it up and give it in a syringe with water until he is old enough to swallow. Thank God he can take this with his other meds and that it will fix him right up. They caught it so early that there has not been time for symptoms to show. Maybe this is the piece of the puzzle that was missing!!

I feel as though a weight has been lifted. Everything is relative I guess. We have an appointment with the hepatologist Tuesday and an endocronologist for his thyroid in about 4 weeks. No doubt he is high maintenance, but check out all this cuteness. I was trying to catch him walking around in Amelia's play heels and got all this instead:

January 2012

The ultrasound went surprisingly well. Thatcher was AWESOME! He looked at the fish on the walls, played with his toys, then watched a movie on the laptop. The doctor called that afternoon to say everything looked fine as far as the liver was concerned (yay...all we care about really!) but they saw some "debris" in his bladder. We went Monday morning to give a urine culture via cath...poor guy! This was not comfortable I'm sure and Thatcher was much more upset than with labwork. His urine is fine, cultures were negative for bacteria so they are not concerned with the debris.

Our allergy appointment was last Thursday morning. I was worried about how painful the test would be so BJ joined me. Thatch had 5 pricks on his back and did not seem to mind...tough guy!! They are very small needles and feel like the end of a paper clip, said the doctor. However, he cried and got so upset every time he heard the baby in the room next to us crying. My little softie.

The allergy testing was kind of interesting. They tested him for egg and banana based on our dinner before his reaction. They did the test on his back and nothing could touch it for 15 minutes. He walked around the halls with his shirt off, and we watched as the banana mark did nothing and the EGG test grew. Yep, he is allergic to egg. Apparently this can happen with kids on Prograf. Hopefully he will outgrow it. They'll check our next set of labs to see just how allergic he is. He has eaten scrambled eggs before and does not have a problem with baked goods (thank goodness, we would be in serious trouble if we had to give up waffles). They prescribed an Epi-Pen in case he has another reaction in the future.

The doctor said it was not true that subsequent reactions are worse, however we were instructed to stab him in the leg with the pen and hold for 10 seconds while the medicine dispenses if we have another reaction. I hope I don't ever have to use it!

We have had a week filled with doctor's appointments. I even had a check up last week! Hopefully we can stay away for at least a few weeks until lab time again.