Overwhelming

Jason and Erin cannot begin to express their deep gratitude to the outpouring of love and offers of support from all around the country.  They are overwhelmed, speechless, and humbled.  It is quite obvious this family has touched the lives of many and they are deeply loved.

I would like to try to give some guidance with your support so that we can be more efficient with our planning time as well as protect Jason and Erin's time so they are not on their phones texting/emailing trying to respond to everyone contacting them.  

1) Please contact Tina Lin (teen103@gmail.com, 312-371-4195) regarding anything
2) Please do not contact them with questions in general because they will feel the need to take the time to respond. 
3) Instead of asking the questions "How are you doing?" or "How is John doing?", please subscribe to this blog to stay informed
4) Instead of asking "How can I help?" or saying "Let me know how I can help", please take the initiative and be proactive in contacting Tina Lin with your availability and what service you are able to provide

Today was an overwhelming day with medical staff coming in and out of John's room.  I was only inside of his room for a very tiny part of the day, but activity was non-stop.  John was agitated and not feeling well.  Trust needs to be built with the rotating cast of medical staff coming through to care for his various needs.  His daytime nurse, Julie, was in the room the whole time checking and changing out his lines and suctioning out his mouth when it was full of saliva and he started to complain.  The bed was inclined for his assessments and the change in body position helped to loosen some mucous.  He had no fever at that moment so he was wearing a hospital shirt and was able to be covered by both the bedsheet as well his knit blanket.  He is still on an oxygen mask.  He tried watching Word World episodes through it all and the nurse advised it would be time to turn it off if he got restless because it is a sign of over-stimulation.      

Speech Pathologist:
She spent time talking to John and Mr. Bear.  He does try to speak, but her assessment is that his lips and tongue are still weak.  She does not recommend trying to feed him for safety concerns.  On a normal soft palate surgery recovery timeline, John should be able to be eating soft foods like jello by now.  

Occupational Therapist (Rebecca), 1 session/weekday:
Her role is to check small muscles like his hands.  She carefully removed his left wrist brace which is protecting the IV line.  She asked John to play his matchbox cars with her.  He was able to point to the car he wanted when she held them out for him.  He wanted to hold each car with his right hand and he would put them down on the bed.  He was not interested in using his left hand so she put his IV wrist brace back on.  She asked him to pick up each car with his right hand, raise his arm straight up and then put the car in her hand which he repeated to do four times.  He was also able to raise his left arm straight up.  Rebecca asked Erin if she has noticed any deficit in using his hands and she responded that he is getting stronger, he will roll his matchbox cars around, and will clutch and grasp onto her.  His nurse, Julie, agrees his hands are stronger and that he will communicate more of what he wants such as suctioning, moving Mr. Bear, or repositioning a line, but he is still weak overall. Rebecca asked John to sit up without leaning on the inclined bed to check his back and stomach muscles.  She helped him sit up and John was able to do a lot of the movement himself, but his neck muscles are so weak the nurse and therapist had to immediately support his head.  John quickly complained, signaling that he wanted to lean back against the bed.  She suggested to Erin to bring in coloring items and playdoh to work on his hand and arm strength.            

Physical Therapist, 1 session/weekday:
The physical therapist will work with John on larger movements such as sitting up and, as he gets stronger in the future, to work with him on standing and walking.

Daytime nurse (Julie):
John tries to cough, but gets frustrated.  A big concern is his blood pressure and temperature, although not today for temperature.  He is still on IV antibiotics.  He needs to continue to work on his trunk and head strength.  Cognitively he is doing better with his alertness.  One of the goals now is to transition to an oral blood pressure medication.  

Just as the room was about to be quiet for a brief moment, John's IV alarm sounded off so Julie came right back in, re-suited up and checked his lines.  And then it was Jiggle Jacket time.  And later the neurologist would be coming in for an assessment.  This neurologist gave an estimated timeline of two months in the hospital and then he would be able to move back home for in-home care and therapy.

Finally, a moment of rest for the little guy.  Jason went in to the office today for the first time since John's surgery.  It was not productive office time, but it was therapeutic time away.  Some of Jason's own words that he posted on Facebook throughout today:

"My stomach is feeling queezy with the thought of leaving john to go work for a little bit. But since he will be here so long, I have to figure out how to do it."

"We were told today that there is likely to be residual effects from his brain injury. it is most likely what we've already seen, unless there is another event. As an example, it could be that he is sleepy 16hrs a day. They have medicines to help. But we were also told that kids brains are much better equipped to heal from these types of injuries than adults."

"Even though John has been getting nutrition, it doesn't go into his stomach which is how the body feels full. Consequently he has been asking for water, food, and specifically... Cheese quesadilla. He has asked me four times now. A few days ago, after asking if he could have some food, he asked me "are you guys eating?" I told him no because we hadn't eaten yet but it was really bothering me because I lied to him. Since then I've skipped a few meals to experience the hunger with him. I would be thrilled if others would consider fasting and praying for john for one meal and then breaking the fast with a cheese quesadilla and sharing the photo with me."

"John is really uncomfortable with his arm brace protecting the line in his artery. In the middle of his moaning he says "I don't like it." I told him "I know buddy. I don't like it either." John replied "you're not wearing it!" I love this little guy."   

Please make note of the new overnight working visitation shifts that are listed on the Visitation page.  Also, due to the response I am receiving about this, a Financial Support page is under construction, so please pay attention for updates on that page.
  
Prayer Requests:
- John to trust the entire medical staff so they can do their job well
- Jason to wake up refreshed and rested in the morning to be able to have a productive day at the office
- John's body to continue to strengthen in every aspect
- preparation for life after this week when extended family leave which has been stressful to think about
- John to be able to swallow so he can eat and experience fullness again
- for Jason and Erin to be free from guilt: guilt of having the ability to eat, guilt of lying about not eating, guilt about having hopeful signs of John's recovery when families around them in the PICU unit do not, guilt of neglecting their kids, etc