On Monday night we fed Liam late, around 9:30 since he had to fast after midnight. We expected that he would complain about being hungry and had prepared ourselves for that for the morning. Our appointment started at 8:30 at the Children's Hospital in Highlands Ranch. We left early and Liam asked for breakfast once and didn't care much when we told him he couldn't eat right now. On the 35 minute drive there he started to get nervous after we told him where we were going. We did tell him before this what was going to happen so he wouldn't be caught off guard. I held his hand and when we arrived at the hospital we walked in and felt God's presence. The hospital is only a year old and it's a kids dream! There are wagons instead of wheelchairs, toys, beautiful kid friendly pictures, it's so colorful and EVERYONE that worked there greeted us warmly was happy and friendly and wanted to talk to Liam. Talk about easing fears. We got to the infusion lab and again were greeted by friendly faces. They confirmed we were all healthy and gave Liam and arm band with his info. The nurse took us into the first check in room and took Liam's vitals. She then brought us to the lab where everyone had their own room. He was her only morning patient and gave him the choice of which room he wanted- he was excited to pick!
The two nurses came in and brought all their IV tools. They took time to talk to Liam and he was his cute, sweet little self. They started looking at his arms to figure out which one would be good for the IV and explained to him what was happening. He sat in Danny's lap and started to get upset, we held him down and she got the IV in the first try. That was the worst part. It was over quickly though and he went back to playing.the nurse explained everything to us and then brough in the Clonidine for Liam to take. He drank it and she came back in 15 minutes later for his blood pressure (and every 15 minutes for his blood pressure for 2 hours) at 30 minutes after taking the medicine she came in and drew blood from the IV (blood was taken every 30 minutes for two hours). At this point he had fallen asleep and was out for the remainder of the two hours.
The nurse then started the Arginine, which was pushed through his IV during a 30 minute period. He woke up during this time and was groggy but ok. He let the nurse do anything she needed and was so cooperative. Near the end of this part he started to get pale, unresponsive and just very "off". I started to get worried and called the nurse in who checked on Liam and said its very normal due to the medicine, the fasting, and the long day. When we were about 45 minutes from being done she said we could order him food and he would be able to eat after the next blood draw. We were so excited, we had been told it would be a 6ish hour test and we were only at the 4 hour mark! As long as he would eat we would get to go home soon! He ate 2 cookies :), though he was still very out of it and she released us.
We were only there 4.5 hours. The nurses were so pleased that Liam was so easy to work with! Liam slept the whole way home and then for a few hours at home. He woke up pretty much back to his normal, spunky, active self!
She had mentioned it would be about 48 hours before we would get the results.I received a call today, around 3pm from Dr. Travers, Liam's endocrinologist. She explained that the normal kid has a level of at or above 10. The gray area is 7-10 and Liam's level was 2.76. A VERY clear indicator of Growth Hormone Deficiency.(GHD). She mentioned she also did a test for his cortisol level which was normal. She said the next step is an MRI. I asked why they do this and she explained that it is to rule out a tumor or deformity in his brain which could also be the cause of GHD( pituitary gland). It takes a lot of steps for insurance to approve it so it might be awhile but that since he's so young he would have it done at the Children's Hospitlal and be put under. As long as the MRI comes back normal we will proceed with the treatment. The treatment for Growth Hormone Deficiency is Growth Hormone shots that Danny or I would give every night. Which is a bit overwhelming but one step at a time.
The last two days have been a whirlwind and I don't know how long it's been since I prayed so much, read so much or thought so much about God. Having a child go through something like this is truly heart wrenching. You never want to see your baby in pain, traumatized or pleading with you not to let the nurse poke him. I wouldn't trade these two days for anything though. Both Danny and I have felt God's undeniable presence the whole time. Walking into the beautiful hospital, meeting the nurses, Liam being so cooperative, getting results quickly and getting such a clear answer plus many other things were 100% God's tender mercies and grace. The love we have received in the form of prayers, Facebook messages, texts, meals, goodies for Liam and calls has been so overwhelming and so humbling and shows us God's love. God has changed my heart. For people, for him, for Liam. I know Liam is a temporary gift to Danny and I. He belongs FULLY to God. He was formed by God and his life is His. I pray this whole experience will be used to glorify God, and help Danny, Liam, Oliver and I to be able to help other families going through things like this. We are ready for this journey! Praise to God alone!
