home sweet home

UPDATE: All of my Tylenol and Mortrin is the Target brand (shocker, I know), so we're good to go. I definitely haven't had time to watch the news or stay in the loop these last couple days, so thanks for letting me know about the recall. Thankfully, my sister-in-law let me know before we left the hospital. I'm pretty sure she knows anything you could ever know about mothering. She's SUPER-mom. :)

We are home. HOORAY. God is good. Very, very good.

Jonah is doing well. He still has some hoarseness and a hoarse cough, but other than that, he seems okay. He's still not eating as much as usual, but we hope to get him on more of a normal schedule tomorrow. We're keeping him on Tylenol or Motrin most of the time, just in case he's having some pain. His pain tolerance is so high (obviously) that I'm afraid he won't let us know if he's hurting. But he's playing and acting mostly normal. He took a three hour nap when we got home today (and I slept for an hour and a half of that!!!), and I can tell he's happy to be home. So are we. Our hospital experience was a good one, and we couldn't have asked for things to go any better, but man, it's so great to be in our own house. Dressing change (and EVERYTHING else) is so much easier here.

Here are a few more photos from the hospital.

We're outta here!

As you can see, Jonah has succeeded in tearing up his face the last few days. It's not from the intubation. There was no damage to his skin (except a tiny blister by the gtube site) during surgery. I think he's just been more tired, fussy, agitated, restless, and itchy than usual and has rubbed his face A LOT. Part of the problem is that we didn't want to give him his Atarax (itching medicine) when he was on an empty stomach, so that didn't help. Hopefully now that we are home, and he is more comfortable, it will start to improve.

And here's what all the hoopla is all about - Jonah's mic-key button.

I'll post more about all the g-tube itself later and how it all works (I'm still figuring it out myself), but I'm too tired tonight to get into it. Jonah hasn't really seemed to notice it. It sticks out more than I thought it would. I was hoping it would be more flush with his skin, but it sticks out pretty far. It hasn't caused him any problems so far, and he can still be on his belly or chest to chest with us, so I guess it's alright... just different than I expected.

Again, thank you so much for all the prayers, comments, and messages of love and encouragement. We felt them! Please continue to pray for his trachea, that all of this hoarseness is normal and will fade over the next few days. Naturally, I'm in worry mode over that and will probably stay apprehensive until he's back to normal. And if you'd like to throw in a few prayers for his sweet little face, that would be okay too. Thanks for everything.

jonah update

This will be super short because Jonah has just gone to sleep (in the crib!), and I'm going to try to sleep when he sleeps.

The hoarseness has not gotten any worse, and seems to be only when he cries or is doing something where he's pushing more air. He's mostly silent now as he sleeps. He's taking three to four ounces of Pedialyte by mouth every few hours and seems to be tolerating it okay. They still have that drain thingy on his stomach, but we are clamping it shut for an hour and a half with each feeding, and it seems he is able to absorb more and more each time... which is good. Right now he is just on clear fluids (through his IV and what he wants by mouth), but I think tomorrow we will start with formula.

Tomorrow the g-tube education begins. I'm a little apprehensive, but know it will become the "norm" just like everything else has.

Matt has gone home for the night per my insistence. The bed is TINY here, so it was either we both cram in the bed (skinnier than a twin) and neither of us sleep, one of us in the bed and one in the "recliner" (being very generous with that description), or both of us trying to get decent sleep by each being in a bed. He'll trade off with me tomorrow night if I let him, but that will all depend on how Jonah's doing. If nothing else, I'll go home tomorrow while others are here and sleep a few hours.

Prayer requests for tonight/early tomorrow:
- that Jonah will sleep (and be allowed to sleep) through the night.
- that the morphine will work at keeping him pain free overnight.
- that we can get this IV and drain thingy out AS SOON AS POSSIBLE. (Every time he moves I'm cringing, afraid he's either going to pull his IV out, thus hurting his skin or going to pull on the tube, thus hurting his skin and his incision site).
- that he will not roll on his tummy during the night (fat chance)... not because of the g-tube button but because if he rolls over on that drain (sorry for not knowing what it's really called), it may hurt his incision site and/or his skin from rolling on top of it.

Thanks for all the prayers. I'll try to update as I can but tomorrow will be crazy with rounds and dressing change etc. I will try to do quick updates on Twitter (right sidebar) if I don't have time to sit down and post.

tough guy

This is one tough and resilient little guy...

... but once in a while, even tough guys have to take a snooze on their Granny.

Things are still okay. Jonah just had some morphine about an hour ago and did seem to be in some pain. He's still sleeping this way now. His "voice" is very raspy, so we're trying to decide if this is the normal "I was just intubated" sort of raspiness or if he's having some airway inflammation and/or blistering. Please continue to be in prayer for that issue. It's the thing we've been most concerned about since we started thinking about this decision months and months and months ago.

update

Sweet Jonah is doing well. He was so tired, but, after some Tylenol, was playing and smiling in his room. Matt finally got him to sleep, and this is what he's up to as we "speak"...


The surgery went well, and when I went back to wrap his torso after they were done, it appeared there was only a tiny bit of blistering around the incision site. It wasn't even enough to drain at the time. I haven't taken the Lite (bandage) off to look at it since, but I've tried not to mess with him too much. If he acts okay when he wakes up, I'm going to try to take a better look.

I got to go in and help with securing the IV, pulse-ox, and leads. Actually, the doctors were gracious enough to let me kind of lead that process, and I did pretty much everything but the actual IV. They were WONDERFUL, especially Dr. S, our anesthesiologist, who happens to be a former Young Lifer. :)

This is me between prep and the post-op rewrapping. I came out to wait with the family during the actual surgery. They would have let me stay the whole time, but I didn't want to be in there for the cutting.


Flattering photo, huh?

While the anesthesiologist was finishing up and the surgeon was waiting to start, I kept asking him (the surgeon) if he watched doctor shows and what he thought about Grey's Anatomy. I also cracked some (inappropriate) joke about Grey's, saying something like, "Hey, when we run out of plot lines, we'll just make them have sex in the on-call room." And in my head the whole time I was saying to myself, "Self, just SHUT-UP. Seriously, stop talking now."

What can I say? I joke around when I'm nervous.

But seriously, it was a great experience all the way around, and the only reason I was smiling like that is because of all your prayers and how incredibly AT PEACE I felt. Don't get me wrong, I was crying on the way to the hospital and completely lost it while holding Jonah as he got loopy and started to giggle because of the drugs. But when we went to that OR, it was like a peace washed over me, I went into "get 'er done" mode, and everything went so well. I know that the peace I felt and my ability to remain unemotional (or low emotional anyway) was straight from God.

But enough about me. Jonah has come through, so far, like a champ and is doing well. He's been fussy some, but has also smiled and played. He's sleeping peacefully in Daddy's arms. His breathing seemed pretty raspy to me before he fell asleep, but I think it might have just been that he was overly tired, because his breathing sounds pretty good now, while he sleeps.

Some of you like specifics to pray for so here they are:
- for his trachea and breathing; that no damage was done during intubation
- for any blistering or irritation that may occur around the button
- that he won't rip his IV out (which is in the top of his foot)
- that he can have a peaceful night's rest (he really needs it)

Baby J's waking up now, so I better run. Thanks again for all the love and prayers.

Oh, and I also wanted to say a HUGE thank you to all the EB parents/friends who helped me get that list together. It was compiled from all their suggestions they sent me through email. You guys are so awesome, and today would not have gone as well as it did without you, not even close. Thank you for helping me help Jonah. Love you guys so much!

g-tube surgery updates

9:30 am - Jonah is in recovery. Everything went well! Patrice and Matt are with him right now.

8:45 am Finshing up the surgery. Everything has gone very well. Patrice just went back to the OR to re-wrap Jonah.

7:50 am - Jonah is successfully (and safely as far as we know) intubated, with leads, pulse ox, and IV EB-safely secured. I (Patrice) was back in the OR for all of that, but sat in the corner and didn't watch for intubation. Everything looks really good so far, and I assume surgery has just started. Please continue to be in prayer for sweet Jonah. We sure do love that kid.

surgery tomorrow

This cutie...

... goes in for surgery tomorrow at 6:00 am.

Actual surgery will probably start around 7:30.

I'd ask you to pray but I know you already are because you are awesome like that.

I will most likely be back in the OR helping out, but Matt will try to update the blog, assuming we have Internet access.

Thank you for keeping us in your thoughts and prayers.

what i've been up to...

This is what I've been doing today -

General Instructions –
DO NOT USE ANY TAPE OR ADHESIVES ON HIS SKIN.
Do not use Latex gloves.
Lubricate gloves with Aquaphor or similar lubricant.
Vitals need to be taken over bandages or wrap Transfer (T) or Conco (roll gauze) over his arm first.
Do not rub him when picking him up. Do not pick him up under his arms. Scoop him up instead.
Move him by lifting, NOT SLIDING.
Do not rub alcohol (or anything else) on his skin. Dab lightly instead.
Pad the table. (egg crate or sheepskin?)
Lubricate anything that will come into contact with his skin.
Heavily lubricate his eyes.

Pulse Ox –
1. For VELCRO kind – wrap Conco (roll gauze) on digit or place small Transfer strip (T) or square on skin and Velcro over bandaging. If it won’t register and is soft material, may can go straight on his skin – lubricate skin first. Should not rub.
2. For CLIP kind - wrap Conco (roll gauze) or place small square or strip of Transfer (T) around finger/toe first and then clip on.
3. For ADHESIVE kind –
Remove any sticky part.
Lubricate skin or probe.
Place thin Kleenex or Conco on skin.
Place probe on top of Kleenex or Conco.
(Can possibly go directly on skin if it won’t register over Kleenex or Conco.)
Secure with square of Transfer (T) or Lite (L) or Lite Border (LB) or Conco (roll gauze).
OR
Wrap light layer of Conco (roll gauze) and put probe on top. Tape probe down to Conco (NOT skin) or wrap more Conco on top to secure.

IV –
1. DO NOT suture IV unless absolutely necessary.
2. Secure IV after he’s sedated. (LUBRICATE mask well or just hold mask over face, not touching skin.)
3. DO NOT RUB his skin or let catheter touch his skin.
4. After it’s in, wrap Transfer (T) around arm underneath the IV catheter. Use the Mepitac tape (M), Conco (roll guaze) or Tubifast (stretchy tubular cloth) to secure catheter to Transfer.
5. Mepitac Tape (M) -but only Mepitac- can go on his skin if necessary. Please let me remove or remove slowly and carefully. If edges are stuck, use Aquaphor to release.
6. ONLY TAPE THE IV TO THE BANDAGES.
7. DO NOT PUT TAPE ON SKIN.
8. If for some reason you must put tape on his skin, ONLY use the MEPITAC tape I’ve provided.
9. Let me remove any EB safe adhesive from skin. I have special spray that will help remove it.

Leads –
1. Remove adhesive.
2. Lubricate skin where lead will touch skin if lead will still register that way. (ultrasound gel?)
3. Cover with squares of Lite Border (LB), Lite (L) or Transfer (T). (They are EB safe adhesives.)
4. You can also wrap Conco (roll gauze) around his chest over the Transfer if you need more security. DO NOT WRAP TIGHTLY. If they dig into his skin, he will blister.
5. REMOVE GENTLY AND SLOWLY. You can “soak” off bandaging with Aquaphor under edge or with water. Do not pull off quickly or his skin will tear.

After Surgery:
1. Only remove what you have to. If anything is stuck to his skin that can stay on outside of the OR, please let me remove it.
2. Put piece of Lite (L) around the stoma, under button, so tube will not lay directly on his skin.
3. Extubate him before he wakes up. Go slowly and gently.
4. All limbs and torso (as much as possible) need to be rewrapped before he wakes up or his general movement will cause him to blister himself.

PRIVATE room.
Reverse Isolation.
Trash to be left outside, so custodial staff does not enter his room.
OWN vitals equipment, to reduce infection risk.
Low dose steroids to reduce inflammation in airway?
Anti-nausea meds?


I still have to cut and label all the individual bandage pieces and put them in corresponding bags labeled Pulse-Ox, IV, Leads, and Post-Op.

And pack four days of bandaging supplies.

And pack everything else.

Don't be surprised if you don't get a lake post from me until Christmas.

I emailed all this info to the surgeon and anesthesiologist and felt the need to end the email with: "I'm not crazy and overbearing although it may seem like it. :)"

Why do I feel the need to explain or rationalize my control issues?

EMBRACE THE CRAZY, people. Embrace the crazy.