Urgent email prayer request

[Denise]

Lastest from Charlie's Mom:

News on Charlie:

First, I want to clarify Saturday's news... Charlie had a trach placed on Friday (went perfectly). On Saturday, beginning around 1:30pm and lasting about 3 hours, Charlie was triggering the vent and breathing over it. This does not mean he no longer needs the vent, but it's a huge first step in that direction. Consider that it's been a month since Charlie has exercised his lungs, since actively using those muscles himself. It is going to take time (only God and Charlie know how long) to regain the strength and coordination for him to take over completely. BUT this was something no one at the hospital thought would happen. After spending a good deal of time trying to disprove Charlie's respiratory efforts, 3 doctors, a respiratory therapist, and Charlie's nurse all confirmed it was all Charlie.

On Monday, while I was massaging his legs, each time I rubbed a foot, ankle, or lower leg, Charlie would move that leg. I've seen glimpses of this over the past week, but nothing I could predict, confirm, or repeat. This morning, on multiple occasions, Charlie pulled his side away, as if being tickled. While these things may seem small, they are actually big steps forward, considering not a single person at the hospital expected Charlie to be here today, let alone ever show a single response. When I was talking with a friend about how no one at the hospital knows what to say, his response was, "I do. God is good. And overcomes "science" and "hospital protocols." That put a smile on my face. And, to that, I'd add that it is all your prayers carrying us forward; that we are seeing the fruits of Masses, Rosaries, fasting and sacrifices being offered for our dear, sweet boy. For those things, I can never repay you, and so I ask God to every single day in my prayers. May He bless you all abundantly.

Many have been asking about what's next:

Charlie had an ultrasound done first thing this morning, which showed his gallbladder is very upset. We know that his liver, kidneys, and gallbladder each sustained varying levels of injury during the initial trauma and arrest. Most of his nutrition still comes from TPN, which adds insult to those injuries; however, because of significant bowel loss, it is going to take a lot of time and bowel rehab to get the small intestines he does have, to learn how to absorb nutrients much more efficiently. We currently have him on an all organic liquid food... do a search on Kate Farms, they have quite a story themselves. As enteral feedings increase, the TPN will decrease and that will help him a lot. Other than that, we are hoping and praying the gallbladder will become less inflamed so it can drain properly, relieving stress on his liver and kidneys too.
Abdominal surgery is scheduled for 9am Thursday morning. Please pray they are able to close his fascia completely. They are concerned about "loss of domain;" meaning, his lungs may have moved down into his abdomen too far since his last surgery (two weeks ago) and that complete closure could take multiple trips to the OR. They are also planning to place a G-tube to make feedings easier for now. They said they doubt they will be able to do the anastomoses (reconnect) on his bowels this week, so he will continue to have an ostomy for another month or two or however long it takes for his bowels to be healthy enough to ensure success.
Occupational therapy ordered Charlie a wheelchair today, in preparation for being able to finally get him up and out of bed (can't do that without a closed belly).

David and I are busy taking trach care classes, so we will be able to bring Charlie home as soon as he is stable, which people are guessing could be anywhere from another four weeks to as long as several months from now. We spend the rest of our days meeting with countless "teams".... rehab, intestinal rehab, occupational therapy, physical therapy, endocrine, ENTs, cardio thoracic surgeons, pulmonologists, palliative and on and on.

I'm exhausted right now, so not sure if there's anything else to share. Thank you all for continuing to keep Charlie in your prayers. Thanks for all your support... for feeding our other children at home; for the little surprises that make our days easier. Thank you Thank you. Thank you.

[MarieT]

what an extraordinary situation
saddened to think that one so young would go through all this
continuing prayers for charlie and his family
Lord mercifully hear our prayers

[Denise]

Latest re Charlie:

Subject: Charlie today


From Julie:
Surgery went "great" Thursday, according to the surgeon. That was a welcome relief. Then he added that Charlie's liver and gallbladder did not look good and had him concerned. That was heartbreaking.

So, Charlie's fascia closed nicely and completely. He now has a G-tube, so feedings should go more easily while he's still sleeping. The surgeon and Intestinal Rehab folks say it will be 6 weeks, give or take, until they do the anastomoses (reconnect the bowels).

I'm sorry I didn't get an update out yesterday about surgery, but it was a rough day. We had some issues with staff on top of spending the day watching Charlie struggle to settle post op. Thankfully today is more peaceful (weekends here are much quieter in general).

Some big news to share, happened on Thursday. Charlie was moving more than we've seen since being admitted to the hospital. He scooted himself up in bed about 2-3" and surprised the nurses enough to get a reaction.! The one is his primary nurse and she was so excited for him! Later in the same day, we were turning him and he made another big move, arching his back away from one of them. Again they cheered! It was very encouraging to see him make such big moves and responses, as if he were wide awake. Since then, he's been quiet, resting and healing from major abdominal surgery.

Hope you all have a blessed weekend!

[Denise]

3/7/21--from Julie:

It's been a very rough week for Charlie.. and us watching the things that have happened to him this week. (Can't give details now). Please pray for his safety and protection!

Having said that, Charlie has been moving a lot this week .... I've seen him move everything from head to toes. He grabbed my hand for the first time late Wednesday night. He's also been breathing over the vent, not any hours long stretches, but breaths more regularly through the days and, at least from my observations, seems there are many times he's almost triggering the breath (I see a definite change in the inspiration part of the wave for several breaths in a row, then the vent picks up patient triggered for a stretch) so I am hoping it's him practicing and strengthening those muscles. We've gotten him up and out of bed and into a chair too, so been a busy week for him physically.

We are supposed to get moved out of ICU and onto the transitional care floor on Monday or Tuesday.

[MarieT]

thanks be to God
praying for all

[Denise]

Charlie Update from Friday:

"Huge news of the day, week, month is that they moved him over to a home vent around noon and, for the rest of the day, 98% of breaths were initiated by him! We are now on a mission to find the doc who will be aggressive about getting him off the vent and trach."

[Johnna]

Wow, amazing. I pray for recovery.

[MarieT]

Poor little tike has been through so much.
Thanks be to God for his recovery

[Denise]

Charlie Update:
....Positive news is they have us set for tentative discharge to home the week of April 12.
We've received many notes from people saying there will be a continuous carrying of this cross through Lent, but that things will be different with the Easter season. We are still praying for a miracle and know so many of you out there are to. The pictures of large family gatherings praying on their knees, outside, in the cold and wet, brought us to our knees, in tears... there aren't words for what we hear you all are doing/praying on Charlie's behalf. Thank you isn't enough, so please know I'm forever grateful.
One last, but very important thing....
Thursday, March 25 is the Feast of the Annunciation. It also happens to be Charlie's 13th birthday. Please keep him in your prayers - and all of us - on his special day.