One year ago today, we were sitting in a hospital room at Minneapolis Children's Hospital with Maisy, anticipating a procedure that would potentially change her life. It was decannulation day...the day the doctors would remove her trach for good. Few words could explain the feelings we had on that day. The feelings were overwhelming.....
Saturday, August 13, 2011
I have been so proud of Elijah as he has worked so hard to tell the nurses how he is feeling. To be honest, he is still really bad at it, but he tries so hard. When they ask him if he needs anything...often he tells them that they need to look in his mouth with the orange flashlight..it may not be what is hurting or even necessary, but he has recognized that he can tell them how he is feeling. He is not accurate most of the time...for example, as he is gagging and wretching, he will say "It's okay, honey." He repeats what I say to him when ever he isn't feeling well.. Often nurses interpret that literally and they think he is doing fine when he really isn't. Yesterday, on a hunch, I asked them to give him a bump (increase) of pain medication to see how he would respond. He doesn't often show typical responses to pain, so I worry that he is in pain and we don't know it. After the increase in medication, Elijah did really well. He was less gaggy, more interactive and alert. After a few extra doses of the increased pain medication, it was obvious that he had been in pain...we just didn't know it.
So, I have learned that I am not going to second guess by instinct. God gave us this sense for a reason....and this is it. I wish I had listened earlier..I wonder how long he had been uncomfortable. He gets chills from the fevers and is more worn out as his body fights with this fevers. He isn't playing much...just watching Sesame Street, Super Why, and Caillou.. But, he is more comfortable now.
Every day, God has shown us amazing things... He has taught us new truths about us and about Him. I am amazed at the way our bodies heal..A fever has a function in the body...pain has a function in the body..without these things, we would have little chance of survival. Isn't God amazing?
Elijah's lungs have remained clear. He is breathing well without any respiratory support. This is an amazing praise! Elijah came into this transplant with lungs that have been compomised. They are small (because of skeletal abnormalities due to the SDS) and have been damaged from prolonged respiratory treatment (i.e. he has been on a ventilator several times in his life.) Elijah has pulmonary hypertension as well. He has made it to day +15 with no respiratory complications...that is a reason to celebrate and give thanks. I am so thankful that God has kept his hand of protection on Elijah's body, heart and soul.
I can still say there is so much peace in this room...there is a sense of calm comfort all around. God has made his presence known through it all...he has given us all a spirit of praise and thanksgiving....we do not fear...
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10
at 9:24 AM