Finally - Some Normal

My days have been super busy being back at home. I enjoy writing updates because I do want to keep everyone in the loop about Nolan's journey and I want Nolan to some day read about his story. I also do not want to forget this part of our lives, as we naturally seem to forget about the more tragic and hard times. This has been some of the most difficult times of our lives, but one where we have gained an amazing appreciation about life, family and friends.

So, Nolan is home! Matt and our warrior got home late Friday night. He is not totally out of the woods yet. When he left CHP his liver enzymes were still high. There are two specific enzymes: alanine transaminase (ALT) and aspartate transainase (AST). Today he got lab draws done and his ALT was 446 and AST was 239. He was over 1000 before, so the levels have come down a lot, but this is still high. We are hoping that these levels were heightened due to medications; because of that they did remove two medications. One was an anti-rejection medicine, Rapamune, and the other was an antibiotic, erythromycin. No other meds have been replaced, so currently we are off of two meds...which is exciting if everything remains stable. Today they also checked his FK level which lets the doctors know that whether or not he is receiving the proper amount of the anti-rejection medicine, Prograf. While he was at CHP he was also tested for various bacterial and viral infections...all of which, so far, have come back negative. WITH ALL OF THIS SAID, we are not 100% sure why the liver enzymes went array, however, it seems we are trending down and we should get a better answer by tomorrow.

Nolan seems to be doing better. Especially today. He has still had some bouts of throw ups here and there, but with his liver enzymes being high, he could not be feeling well. We had a nice Easter holiday. I am pretty sure this was our first holiday all together...at home! The Easter bunny came, Riley, my parents and I went to church, we had a nice family dinner (McLaughlins, Everetts and Uzupis) and then everyone went out to the Cabin and Nolan and I relaxed at home. Just all around a decent day.

Last week was a rough week for us. It seemed like we had some sort of situation every day. Crossing my fingers, today was a great start to the week. First, it was an absolutely gorgeous day. Second, Nolan had lab draws today and they got the draw on the first poke. Third, Nolan was pretty chipper all day...having one significant throw up. Fourth, I am finally getting SOME organization done to the house and Matt has projects going on in the yard. Fifth, Nolan's buddy Ollie is stable and hopefully on his way to some brighter days (more on that in a minute). AND FINALLY - two of my co-workers are about to have babies and I am excited to meet them both! I actually feel like I (dare I say it...) had a normal day. Came home, made dinner, did the normal house chores, baths, etc. It feels SO good!

Last...I would appreciate many prayers for our buddy, Oliver (Ollie). Unfortunately Oliver crashed Easter evening. I have a pit in my stomach because Ashley, Ollie's mom, was standing right over him when it happened and witnessed the entire horrifying moment. FORTUNATELY Ollie is stable and no damage was done. The Halligan family have a big week coming up and some decisions to be made, all that will help this amazing boy gain strength and grow...so I am praying this wonderful family has a positive week. They deserve it.

OK - I am hoping to continue to post daily! If anything, I always put a little something on Nolan's Facebook page: Nolan - Heart of Steel.

Good night! Thank you all for the prayers and support last week. It will be a bumpy year, but we have come so far and have such an amazing team of people (ALL OF YOU!) helping us through!

#nhos

#donatelife

http://childrenspgh.org/2014/04/18/nolans-heart-of-steel/