Swallowing

Facebook post from Jason:

"No new update with john beyond what Tina wrote. Still waiting for john to swallow. Tonight a doctor was watching John sleep for about five minutes. Afterwards he remarked that he didn't see drool while john was sleeping indicating john is swallowing in his sleep. Sooooo, I guess that means my stubborn stinker is just too scared to do it while awake."

How to Help

Please note the new "Babysitting" page with spots available for sign-up.  

All volunteer opportunities, including meal drops, have now been consolidated on this blogsite so please check back often under "Visitation", "Take Them a Meal", and now "Babysitting" for opportunities to serve the family.

Two Weeks

Today marks two weeks since the day John first entered the hospital for his soft palate surgery on Tuesday 4/22.  For a quick recap, after devastating setbacks in recovery, that Friday 4/25, Jason and Erin were told to prepare themselves that John may need to be in the hospital for up to a year.  Exactly one week ago, on Tuesday 4/29, the neurologist mentioned that John might be out of the hospital in two months and moved to in-home care.

Fast forward to a follow up of what has been going on today since John had a feeding tube inserted yesterday.  Today's assessment of the feeding tube went well so the big line in his leg was removed.  John also took a walk around the entire PICU with the aid of his Physical Therapist.  Yesterday there were talks about moving him out of the PICU to the regular pediatric floor, but that has been put on hold because that floor is full.  Once there is space, he will be moved to the pediatric unit.

So the best perk about being the Rowland's blogger is that I get to be the bearer of good news and the good news just keeps on coming.  Today there were talks of home again and with a new timeline.  Two weeks.  Two WEEKS.  That is actually a timeline that is within grasp now, a timeline that allows the Rowlands to be able to start thinking about how to get ready for home life again.  Two weeks is not set in stone, but they are switching gears to prepare for that now very real possibility.  The doctors really want John to be swallowing more before being released to in-home care.  He is receiving 45mL of Pediasure an hour through his feeding tube and the hope is that his desire to swallow will come back now that his stomach is receiving the nutrition.  

Prayer Requests:
- John's stomach nutrition to trigger swallowing
- the timeline of two weeks till home to hold true
- preparation for home life for the entire family and what long-term, in-home care will look like
- continued forward steps in John's recovery and continued good news

Feeding Tube

Dart gun fun with his PT and OT

 

He shot it down the hallway and with assistance, walked over to pick it up 

Stroll around the PICU

Getting his feeding tube inserted

John's good days have been abundant and he kept the streak going today.  A foot-long feeding tube was inserted through his nose and taped to his face this afternoon.  He complained right beforehand saying "I don't want that", but Erin and his nurses strategically timed the procedure right before his nap so he was able to fall asleep soon after.  He has been doing well with no complaints since waking up.  This feeding tube is better then the stomach port they had been considering in that he did not have to go under and get an incision for it, but it is not something he can leave the hospital with (there are still no talks of when that would be).  

He is currently off all medication, except possibly some Tylenol, and nutrition.  As previously posted, his arterial line on his left wrist had already been removed.  His jiggle jacket therapy has also been completely stopped because he has been up and out of bed.  If the feeding tube is successful when they assess it tomorrow, the port attached to his leg will also be removed and then he will only be attached to a feeding tube and his oxygen sensor.  Ready for the big news?

John might be getting moved out of the PICU and onto a regular floor in a few days!  That will be a huge sign of progress for him recovery-wise, but it is most significant in that the entire family can be together in one room again whenever they would like. 

His left side is still weak (face, arm, and leg) and he favors his right, but overall, John has become more alert, interactive, and social giving lots of smiles.   

Prayer Requests:

- John to continue to not be bothered by the feeding tube

- his body to strengthen quickly with this new form of nutrition and his hunger and thirst to subside

- John to move out of the PICU in a few days

- continued effort to try to swallow 
- Jason, Erin, and Joanne to find their groove in routine this week as the main caretakers for the family

Fresh Air!

Going for a stroll outside.  First time John has been outside since Tues 4/22

First family photo since Easter. Lots of smiles today!

Family photo with Joanne and Jim.  They arrived safely in Denver this afternoon. 

Climbing back into bed with the help of his nurse after a stroll around the hospital block.  Hoping this will become a regular activity for John.

Facebook post from Jason:

"It can seem from all the progress that John is making that he will be out of the hospital any time now. It's more likely he won't leave for a while still. I'm only posting the brief moments of progress. We still have a very long way to go. He is still very tired all day. He still can't sit up well for very long. He can't stand or walk on his own. Instead of smiling nearly the entire time he is awake which was his normal, we are excited to see one smile a day. Please stay with us in prayer for the long haul. I'm hopeful he will recover but we are preparing for a long road ahead of us."

Good News from the Kidney Doctor

Facebook post from Jason:

"The kidney doctor just came in. She just told us his blood pressures have looked great off medication so she will step back as the blood pressure was almost certainly due to swelling in the brain. She told us she had a stroke after her child was born and she is doing fine and that the brain can recover so have hope."

The left wrist line and brace were removed today so the only thing remaining on his left arm is a finger heart rate monitor. 

Sleepovers and Smiles

(glowsticks with Joe)

(Rowland boys having a sleepover with John)

(watching Angry Bird cartoons together)

("With smiles and a tiny bit of laughter!" - Jason)

Hunger and Thirst

John's overnight rest has drastically improved these past few nights now that he is allowed much more uninterrupted sleep.  He still gets a neuro check about every six hours and a diaper change when necessary.  However, he only gets agitated while the nurse is in his room, rather than for the whole hour following, and is able to quickly fall back to sleep.  Last night when he was woken up, he complained about being thirsty, repeatedly saying "I want water."  His nurse gently responded with, "sorry sweetie, it's not safe yet."  She increased some of his fluid intake through his line to try to curb some of his thirst.  She also dipped a small sponge in water and placed it in his mouth while suctioning at the same time.  Tonight Jason's mom and her husband begin their drive out to Denver from California with the hopes of arriving sometime tomorrow.  Erin's mom will be heading home early tomorrow morning.

Prayer Requests:
- John's hunger pains to subside and his thirst to be quenched
- continued restful nights
- safe travels for both Jason and Erin's moms this weekend
- John to continue to try to swallow so that he can experience eating and drinking again soon
- John's body to strengthen so that he can get up and move around   

Out of Bed

(John was moved into the chair next to his bed to color with siblings today)

(with Grandma Linda)

It's Official

Erin's dad left this morning and her mom will be flying out Sunday morning.  However, it's official that Jason's mom will be moving into town and arriving later that same day leaving no gap in extended family support.  

(morning with Papa Chuck)

(physical therapy)

(John had a couple of tiny swallows so he will be getting popsicle therapy 2x/day)

Facebook post by Jason:   

"Erin said she heard John laugh at Shaun the Sheep. I'm officially jealous that she gets the fun shift."

The neurologist pointed out that they will need to pay closer attention to John's left facial muscles.  It was assumed that he did not have good movement because his whole body has been weak, but they would like to start paying special attention now.

Prayer Requests:
- Joanne to get ready to move herself and her work in just three days
- John to continue to strengthen all of his muscles, especially his facial muscles
- John to keep attempting to swallow