Cheese Quesadilla

Success

John had a rough start with the swallow test today because he was mad he was back in the x-ray room and refused to eat.  Eventually he did it though and the study showed great eating and swallowing and the feeding tube was removed! 

Swallow Test Scheduled

Despite John's progress with swallowing and eating this week, his feeding tube was not removed today.  The medical staff needs to actually see him swallowing through x-rays before they will remove the tube.  John has been scheduled for a swallow test this Friday.  During the exam he will sit inside a special chair that will take multiple x-rays as he swallows food.  If all goes well, John will be parting ways with his feeding tube this Friday.

Prayer Requests:
- John to be relaxed during the exam and be able to swallow
- John's feeding tube to be removed this Friday after the exam
- continued strengthening of his entire body as he still favors his right side   

Hungry Boy

Facebook post by Jason:

"For lunch Erin gave john pudding, yogurt, and cream of wheat. He asked for eggs before he realized his tummy hurt and was full. The doctors prescribed 1000 calories a day for him. He is at 800 for the day so far with 550 coming from real food at lunch. No feeding tube at lunch!!!!"

"John is so excited about eating real food he hasn't figured out yet when he needs to stop. He eats and eats and eats until he gags and feels sick. Then he wants to eat some more. He ended up eating about 1,400 calories today. The doctors prescribed 1000 calories. Tomorrow Erin takes John for his therapy sessions. We are hoping that they will decide to take the feeding tube out now that he has eaten more than 1000 calories through real food. We also would like to know that he is safe to eat more solid foods and that he won't panic and choke on it. Thank you to everyone who has been faithfully praying on our behalf."

Pudding

Facebook posts by Jason:

"Having a down day. Sad. John said he was tired and asked if he could stay home. Erin had him out for several hours yesterday. Still trying to get used to how quickly he tires."

"Most of today was hard/sad. But at dinner this [referring to his posted video] was his second helping of pudding. I think he swallowed a majority."
 

First Post ICU Check-up

Facebook posts by Jason throughout today:

"John goes back for his therapies today. He will hopefully have a swallow study. I would like to know he won't hurt himself by swallowing."

(John at physical therapy)

"John failed his swallow test. We can't give him a donut to chew on because his throat muscles just aren't working yet. Doesn't really change anything. Just sad for him."

Donuts and Wrestling

Facebook post by Jason:

"Thank you for praying. The last few days have been easier. Still no swallowing. Erin said that she sensed a difference in John's attitude yesterday. He showed more interest in swallowing without getting as frustrated. It seemed like he was drooling less. He sat and licked and chewed on a doughnut for over 2 hours yesterday without getting frustrated. He also "pushed the button" under his chin on his own to try and swallow. We've been encouraged by several friends who have been through similar trials to think of this time as the summer of healing or the summer of adjustment and continue to rejoice in small victories.

This has been the hardest on Joe. He really enjoys when we wrestle and asks me frequently now so I've been trying to make sure I wrestle him even when I'm tired. Wrestling usually is me just holding him down and punching him repeatedly so I'm not really sure what it is about it he likes so much. But it makes him laugh and smile and seems to lighten his mood which makes me and the girls happy too."

Take Them a Meal

FYI, there are more meal spots available to sign up for so please go visit the "Take Them a Meal" page on this website.  Thanks.

Reality of Life at Home

Facebook post by Jason:

"My family is really struggling with the reality of a long recovery. I think because we are home with john we subconsciously expected fast progress. Especially how well he has done so far. We are all still grieving in our own way. Joe gets angry at simple things easily and really wants john back. Kelly is constantly angry at her mom. Kate maintains a cheerful smile but I catch her rubbing her eyes. Erin holds it together all day but then cries in the dark at night. I am impatient with our emotions because I want us to be strong and I am irritable because I can't fix it. I am hurting seeing john so desperate for real food that he asks to lick the left overs from our plates. It is so hard to go through this without knowing what the future holds. When we think about the past we are reminded of what we have lost. When we contemplate the future, fear threatens to overwhelm us. To survive we can only give thanks for each day that God gives us. When we are able to live in this moment right now, we can still enjoy life even when it doesn't look like we hoped it would be. Please remember to pray for us. I am desperate for your prayer."

Looking for: Twin-sized plastic bed coverings

Hi Rowland friends,

If you have a twin-sized plastic mattress cover or plastic pillow case cover you do not need anymore and would like to pass on to the Rowland family for John's use, please let us know.  Thanks!  =-)  

Homecoming

Photos of John's Homecoming today... 

I think the photos speak for themselves of John's big day today.    

John will have a full week at home before needing to go back to the hospital for a check-up on Friday and before therapy sessions resume.  He needs to be able to eat an entire popsicle before the feeding tube will be removed.  He may be at home, but John will still need a lot of care and therapy.  He has been in bed with little movement for two and a half weeks so he moves around with very wobbly legs and a weaker body in general.  He still is not able to eat or drink on his own.  Since he cannot swallow, he is constantly wiping his face of his saliva to the point he has a few raw spots on his face from all the rubbing.  He will also need to potty train again since he had to be in diapers during his entire hospital stay. 

The family will be discovering their new normal at home during the last few weeks of the school year and then they will need to adapt to another new routine as summer break begins.  

Prayer Requests:

- John's major adjustment from ICU life back to home life

- safety as John walks around and up and down stairs on wobbly legs

- John to swallow so that the feeding tube can be removed

- entire family as everyone adjusts to John being back home and the extra care and attention he will need in recovery

Last Night in PICU

(photos from last night)

After the big news yesterday of John being able to go home, the nursing staff trained Jason and Erin how to feed John through the feeding tube.  It involves uncovering the loose end of the feeding tube, attaching a syringe to it, pouring Pediasure into the syringe, and then letting gravity do the rest.  The entire process takes about 20-25 minutes including the time it takes to let some water drain through afterwards to clean the tubing.  After they return home, they will be provided a disposable IV tree and a gravity bag to pour the Pediasure into so they will not need to manually hold up the syringe for the entire meal.  They were sent home with a spare feeding tube in case the current one accidentally got pulled out.  They would just need to bring John into an emergency room to get the new one re-inserted.  When he is not being fed a meal, the loose end of the tube just gets taped closed and safety pinned to the back of his shirt. 

WHAT?!?

JOHN WILL BE GOING HOME TOMORROW SAT MAY 10TH!!!!!!

What!?! 

WHAT!?!

The excitement is palpable even over the phone.  Jason called me from work to tell me the crazy amazing news.  I asked how is he possibly going to focus at the office today and I swear I could hear him walking straight to his car to head to the hospital for the last 24 hours of John's stay.  You can be sure that stereo is going to be full blast on the drive over. 

John will be going home with his feeding tube and they will be training Jason and Erin how to use it.  He will be fed using a syringe and gravity three times a day and going back to the hospital for outpatient checks three times a week.  They believe John is physically capable of swallowing, but psychologically he will not.  They are hoping spending time at home watching everyone else eat will encourage him to swallow again.

(song lyrics that are running through my head)
"I'm coming home
I'm coming home
Tell the world I'm coming home
Let the rain wash away all the pain of yesterday" 

IT'S TIME TO CELEBRATE!!

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

Determination

John had another good day according to his nurse.  He was able to taste a couple of popsicles during the day.  Erin and nurse Julie gave him a shampoo and bath on the bed.  His lungs sound better so the Jiggle Jacket therapy was ordered to be stretched out to 6 hrs going forward.  Respiratory Therapy will continue as long as he is laying down for most of the day and not able to cough on his own.  Therapy will probably stop once he is able to get up and move around.  He was able to sit and hold his head up on his own for a significant amount of time.  He showed a lot of determination in coloring today.
 

He wanted to keep going even when he could no longer hold his head up so he was propped up with various pillows.

Even when his head continued to slump and he could barely keep his eyes above level of the paper, he was determined to finish his drawing for his buddy.  It is that kind of determination that is going to get him through this.

 

Jason and Erin's friends have continued to contact me with encouraging words and support to pass along.  Tonight I received this photo of the very moment John and the rest of the Rowland family first met.

(Jason on left in red, Erin holding John on right, Joe in yellow, Kate next to Joe, Erin's mom behind Erin in blue)

Prayer Requests:

- Jason's mom to be able to move to Denver temporarily.  She is planning for the move this weekend and to arrive in Denver by Sunday afternoon as long as her husband's boss says okay tomorrow

- John to continue to make significant steps in body strength so that he can start getting up and moving around

- stamina for Jason and Erin to keep juggling hospital, work and home life

Jason's Posts

Facebook posts by Jason throughout the day:

"Since my sister Shawna is leaving today, I went home to get one last uninterrupted nights sleep while I could. Instead of going to office, I really wanted to go see John at hospital this morning. He started asking for a tea party because that's what the speech therapist was tempting him with for the swallow test. I leaned over and was in the middle of giving him a hug when he lifted up his little arm and squeezed my neck. I miss him so much."

"Speech therapist. No swallowing but good tongue movement. Lots of suctioning"

"Erin sent this to me a few hours ago. "Really using neck muscles to play angry birds"  "

"I just broke the rules. I secretly kissed john on the cheek without my mask. Don't tell."

Uninterrupted Sleep

John had quite the full day yesterday.  After all the coloring, playing, and smiling, the Physical Therapist had come in and helped John up to a standing position.  She had to brace his knees, but he was actually putting a little pressure on his legs.  He needs to continue to do exercises that will strengthen his head.  She also suggested playing games on the iPad that are just out of reach, forcing him to stretch out his arms and strengthen his core.

Since John's first night in the PICU, he has been going through a barrage of tests and therapy treatments around the clock.  Just to name a few:

1) Respiratory therapy (Jiggle Jacket) every 4 hours for about 20 minutes at a time  
2) Oxygen assessments every few hours to see if he was able to come off the mask
3) Neuro checks every 1 hour, when he was first admitted, that involved turning on the room lights, shining a light into his eyes, checking his temperature and waking him up to see if he could squeeze their hand and kick
4) Early morning chest x-rays, sometime between 4:30-5:30am, which involves lowering his bed, removing the leads on his chest, rolling in a large machine with one arm hovering over his chest and one that gets slide underneath him
5) A blood draw every morning, also sometime between 4:30-5:30am, where he needs to be held still

Not the best setup for a restful night of sleep, but John has somewhat gotten used to PICU overnights because he is able to sleep through blood pressure alarms, the obnoxious IV alarm, nurses checking, switching, or flushing out his lines.  Mainly now, it is the hour after an assessment or therapy treatment that he is the most agitated. 

But yesterday's good day continued into the night.  The staff was hoping he was so tired out from the day's activities that he would sleep.  Since he can be off the oxygen mask for a significant period of time now, oxygen assessments were scaled back to every 12 hours.  However, the big news yesterday was no Jiggle Jacket during the night and neuro checks were going to be stretched out to every 4 hours.  They never came to do his chest x-ray and it is unclear if it was to allow him to keep sleeping or if it was because his lungs have improved enough that it warranted the x-ray to be cancelled.  Either way, John was less agitated and able to get some solid hours of sleep in last night to help with his recovery.  This gives peace of mind to the family as tonight begins a rotating crew of overnight volunteers.   

Jason's mom and sister, Joanne and Shawna, return to California this morning.  It is a strong possibility that Joanne's work will allow her to temporarily move to Denver.  We are hoping to find out later this evening.  If she is, she will try to return by this Sunday evening and ideally she will work out of Jason and Erin's home and help with driving the kids during the day.  There are a lot of logistics involved if she were allowed to move to Denver temporarily and a very short amount of time to get things done.  Joanne had moved out to LA to help with Shawna's family, so it would mean for Shawna's family to do their own shuffling of schedules and caretakers.  Also, Joanne would need all her work equipment and files packed up, flown out and setup before Monday morning.

Prayer Requests:
- more restful and uninterrupted nights for John
- more significant steps in his recovery where assessments are scaled back further and further apart
- Jason's mom and sister to have peace of mind with John's care as they leave Denver this morning
- Jason's mom to be able to temporarily move to Denver, returning this Sunday evening, relieving the family of the dreaded gap in extended family help
- all the big and small details that will be involved with Joanne's potential move to be taken care of smoothly and quickly

Celebration

John had a rough night, but that in itself is a good sign.  They are told that as he gets better, his nights will get worse.  But today has been a great day and cause for much celebration. 

Erin brought in his Playdoh, crayons and coloring supplies as suggested by the Occupational Therapist yesterday and John spent time doing both, working on his hand and arm muscles.  Um, anyone notice something different with these pictures???  John is no longer on the oxygen mask!!!  It was confirmed yesterday that the oxygen mask was needed because of his pneumonia and not because of brain function.  

Jason was at work today when Erin texted him this photo right at the very moment he was wanting to see his boy's smile.  I think his Facebook post says it all: "A smile!!! I'm leaving work to go see my baby "RIGHT NOW!" as John would say."

I was just joking around with Jason, but I am going to post it anyway.  If you have ever been in Jason's home or have been around when he pulls up in his van, the guy likes to blast his music.  He gets all into it and sings at the top of his lungs in worship.  Well today while waiting for the big kids, he got the loud bass to work with their Swagger Wagon's Bluetooth so he started blasting David Crowder's "I Am Holding Onto You."  Today is indeed a day to celebrate with the Rowland's and it seems fitting to put their last family photo taken on Easter Sunday.

Prayer Requests:
- continued positive signs in recovery and reasons to celebrate     
- roller coaster of emotion and continued separation from the older kids for almost the entire day
- agitated nights and seamless transition from Shawna to volunteers
- critical transition period from extended family to outside help this next week as Jason's mom and sister leave town tomorrow morning and the rest of the extended family will be leaving on Sunday