 |
| Aidan over the summer at a family party |
As many of you know my sister Carolyn has been maintaining the blog for Aidan, but today I wanted to log in personally to share the weekends amazing updates.
Saturday morning they systematically lowered the vent ultimately to zero and Aidan was breathing fine on his own. His blood gas remained good and did his vitals. I can't explain what a relief it was to see him that stable. Since he lost his autonomic functions (ability to regulate this blood pressure, etc.. ) the fact that this has normalized is proof his nerve functions have repaired themselves for these controls.
Around 1 pm they prepared to pull the tube and with a team of doctors and respiratory therapists; and Mom and Dad of course they pulled the tube. At first they didn't hear proper lung functions, but shortly they were able to hear perfect lung operations. We think he must have been scared and was holding his breath.
They put a mask with oxygen and an Albuterol treatment on him and with in 15 minutes they removed the mask; and put the oxygen into his nostrils. We stood anxiously bedside awaiting a response. And then it came.. He SMILED with his cute little Chiclet teeth and said "Mama"! I said "ah buddy, you are going to make me cry", he smiled even more.. I said "you think that's funny that you're going to make me cry?" We were laughing, crying and smiling from ear to ear. I can honestly say, I had NEVER been happier in my life. It was a miracle, an awakening. We've always said our lives' story would make a best seller and this just added the best chapter in my life.
They have stopped all medications except the methadone, that they are using to ween him off the pain meds. They pulled most of his IV's, except the one for his plasmapheresis (which today will be the last round) and then we will pull the femoral line which is causing him discomfort in his left leg.
We are currently waiting for the speech therapist to come and evaluate Aidan's ability to swallow. He's currently still getting his nutrition through a feeding tube in his nose. If all goes well it's possible he gets the feeding tube out today!
We already met last week with the representative from Children's Specialized Hospital in New Brunswick. We expect to see her again today and confirm when they have a bed available for Aidan. Our guess is by Friday we'll be moving there for a while. Their program is fantastic! They offer everything from Physical, Speech, Occupational therapy, Nutritional Counseling, Psychological, Swimming, etc...
Currently, Aidan moves his arms but not with a tremendous amount of control. He can wiggle his toes, but can't move his legs to speak of. As mentioned in previous posts, we expect this to take the longest to return. We only pray it does and with a complete recovery! Both his eye lids open completely and his facial expressions are clear and purposeful. He is talking, albeit softly and not too often as we imagine his throat is sore from the tube being in for so many days.
Aidan was up all night last night and is still awake now.. I don't understand why he isn't exhausted. I am! The child life specialist came in to visit and offered us the Wii and we asked for Go Fish cards. While he can't really hold the remote or cards I will assist him.
We are so happy of the progress and pray it continues. Thank you to everyone for your love and support! Many continue to ask what can they do.. stay tuned for detail for an evening out. My cousin Jenny has 4 bands which have volunteered their time and the Elks club is donating the venue while others are offering food. We will likely hold an event in late October or mid November on a Saturday night. We are also working through details to start a foundation called Aidan's Angles. Which all of you are!
The mission is start a foundation to assist families through this difficult time. In the future we'd like to help others and pay it forward so others can have one less thing to think about during their time with a sick child. There is no other place that we need to be then here for Aidan. The normal routine of work and managing life outside his recovery has been non-existent. You, Aidan's Angles have helped us tremendously. So, stay tuned for a night of great music, food and celebration. We already feel celebratory for the answer to our prayers to have Aidan smiling again.
Much love to all,
Kim, George, Taylor, Zachary and Aidan.
No comments:
Post a Comment