It's been a hodgepodge day, a little of this, a little of that. A group from the stepdown unit, where Eric will go once out of ICU (in a couple weeks?), came by, told us a bit of what life would be like there. There will be lots of learning, especially for Bob and I, on how to care for Eric and his tracheostomy, ventilator, etc. Of course, that will only be a review for me. Eric will learn how to talk and eat with his trach. There'll be lots of rehab. We're told the rooms are nice there, big, with a pullout bed large enough for both Bob and I to sleep on. They gave us a notebook with info on tracheostomies. They showed Eric an actual trach tube, so he knows what they look like. They also informed us that, once the trach is put in, Eric will be on "fresh trach" precautions, which includes 5-7 days of not just sedation but paralyzation so the trach has time to heal. This sounds extreme to me. A question for my medical community readers . . . is this common practice? Or a pediatric thing? Or something specific to the ENT group here at TCH? Because Bob and I totally don't want to see him parayzed for even two days. The plan is to build Eric's strength. And we've seen how even a couple days on paralytics can sap a person's muscles and energy. If it is just a pediatric practice, we're hoping ENT will see Eric as adult in both size and maturity, and not insist on those 5-7 days just because "that's how they do things here."
The rehab doctors came by and evaluated and examined Eric. Not sure if they made a specific plan for their physical therapists. They asked if there were any rehab facilities for Eric in the Lake Charles area. I'm not sure, but that all seems so far in the future to me right now.
Eric received a "PIC" line today, which is some kind of fancy IV. Later today, they pulled out the arterial line and CVP line. They stopped the TPN and increased the tube feedings. We're in the process of cutting back on sedation, and this is difficult for Eric, even though he wants to be less sedated. He wants to start doing things like sending emails, playing cards, gameboy, reading, and the sedation is making this a challenge. But they've got a weaning protocol here that hopefully will make the process more comfortable for Eric.
We found out my two sisters, Sue and Lisa, are coming to visit Apr. 2-4 from Pa. We're pretty excited about that. Bob's sister and brother-in-law came by this afternoon.
And now Eric is sleeping.
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10 comments:
We can't wait to get there!!!
My prayers are for all of you to be able to get through the ordeal so Eric can feel like a 'person' again. You have such strong faith and I pray that there is a giant reward at the end of all this process for all of you. I will pray that the trach placement will go smoothly. I'm happy that your sisters are coming. There is nothing like family at a time like this.
God's blessings on you and all your family.
Love, bev
I hope you and Lisa and Sue just hug and hug and hug. I'm so glad they're getting to fly in to be with you.
I join Bev in prayer for that giant reward--and I'm hoping it's complete restoration for Eric. That would be a wonderful reward for the entire family and all of us prayer warriors. :)
Hey Angie, I am commenting on the fresh trach precautions. I worked in an adult ICU for a couple years and the only time that I saw fresh trach's they there heavily sedated before the surgery. I understand the rational for it though, because with peds the patient tend to "squirm" more so then adults and the trach site can become larger or malformed because of the movement, thus reducing he efficiency of the trach. At the same rate the trach is sutured in, thus reducing the manipulation of the site. My mom took care of fresh post-op trach's on the floor with no sedation, that was many moons ago though. I suggest talking to the Dr's and nurses to see if it is a hospital policy and what the rational is. It may seem extreme but they may have their reasons. I am praying for you all, and for the medical staff caring for Eric!
Angie, from your request in latest blog writing, I forwarded that to Marcia at Shadyside Hospital and asked her to check around. Her response is below and may be of use - Jim Grapes
Here is some preliminary info.
Per 2 icu's nurses who have worked extensively w/trach's at Shadyside; sedation/induced paralysis is not "policy" in our icu's.
(I am) assuming that Eric is smart enough and cognizant enough to not pull at it; he didn't pull at or bother while intubated, apparently; at 14 y/o he knows to leave it alone. Coughing is encouraged to assist in clearing secretions - can't be done if sedated/paralyzed; they want to watch his air exchange ---- on his own; the stoma is carefully monitored for secretions around the trach and for proper healing (the body of course is recognizing a foreign object); I would encourage discussion w/doc's to determine "why" this is their practice, citing practice at other facilities "not sedate/paralyze"; concerns re: Eric's learning to cough and "work with his trach"; their concerns for muscle wasting, etc.
My continued prayers are with you and of course Eric. Always remember you are the only and best advocate for Eric. If you feel uncomfortable about the paralysis then question question question. And expect answers that satisfy you. Use the internet and google everything. And if your gut says NO this isn't right then tell the docs NO! Go to God ak for a sign to see if you are going in the right direction. Love yall. A Texas mom>
What a handsome young man Eric is! Tell him God loves him very much and He is looking out for him. I pray for recovery to happen at such an fast pace that even the doctors will be amazed. Eric evidently is a very strong person. Tell him many people are praying for him and will continue to do so until he makes a completel recovery. God bless you all.
Hello, my name is Melissa Adams and my two boys-Kris and Lee Adams go to school with Eric and Andrew. Lee is at MB Middle and Kris is at Sam Houston where Eric has his math. Kris and Lee also ride the same bus and have played Mario-Kart over the web with Eric and Andrew. The boys tell me daily what they have heard on how Eric is doing. Our prayers are with you and your entire family. Keep up the faith and hang in there.
PS-My husband, David, is a major Steelers fan.
Speaking God's Word will bring God on the scene. "I am watching over my word to perform it" Jeremiah 1:12. "By the wounds that Jesus bore you (Eric) is healed" 1 Peter 2:24.
I'm still trusting God for a miracle and believe in my heart that He can and will make Eric whole and give him back all those things he's lost and so much more. Eric is going to have a testimony that gives God such glory and honor, and brings tears to everyone's eyes. His healing will touch so many... bring many to Christ. I truly believe God is using you all now, right this minute as Eric's name flies across the country via word of mouth and Internet -- so many are praying. I just know, know, know there will be a complete healing. Praise God!
I miss you bunches! Much love to all of you.
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