Toxic Hepatitis? Becoming desperate for answers Part 2

MamaLama said...
Long days, Brian...so much to learn, figure out, fight for, wait...you must be torn up. How is your little one doing?

Even at #1, it could be some time. Mike was #1 for about 8 days. I'd taken him to the ER "again." He said he couldn't go on, was giving up, and I took him in. The TP hepatitis doc sat at his head, held his hand, and whispered to him. Promised him a liver, if he would just hold on...promised it would be days not weeks or months anymore. And Mike held on.

Praying for a good outcome for her too.

Does she have a name? I pray better when I know.

Hugs,

Carol

Little one is doing well. Just got her started back on rice now that we are settled again; she was going through formula like crazy. I'm looking into local nanny listings to see if I can find someone reliable who can watch her while I visit the hospital, because of their no child visitor policies. When my wife transplants, I will definitely need a sitter to visit.

My wife's name is JaeGyu; simply pronounced JQ.


She called tonight, very frustrated. She was complaining about them "making a hole" and being uncomfortable. I tried to explain that the doctors are doing what they need to do to treat her. It was hard to understand her. I talked to the nurse, who was very cordial and friendly. She explained that the last shift doc had put an NG tube in her nose to suck the excess from her stomach because she was having issues with vomiting again. She already has a KO tube in the other nostril for feeding. I would be pissed off too if I had tubes in my nose. The nurse confirmed that they did x-rays to confirm the tubes were both placed properly. She later was able to get my wife some pain meds, and she promptly fell asleep.

Got an early call from the hospital today. Wife was having trouble breathing last night, due to excess fluid putting pressure on her lungs. O2 Saturation was down. They transferred her to the shock trauma unit and put her on a different type of air (cant remember the name of it) and got a different type of breathing mask on her. They will transfer her to ICU when a bed opens up. I also believe they said they removed the NG tube since it wasn't really necessary after all.

Spoke to my wife briefly; she was trying to use her iphone but she cannot even remember her access code to unlock it. She had thought maybe I remembered it or that I had changed the code. She told me she is having a very hard time thinking or focusing on anything right now.

I talked to her new nurse, who was very kind. She has been going over my wife's chart and will continue to monitor for encephalopathy, but thinks my wife may also be slightly hypoxic due to the low saturation. She agreed to try and help my wife remember the code to unlock her phone and then remove the code in case she forgets it again.

Seems like time is really beginning to slow down for us all.

Phone has been ringing all morning, but doc just called to explain the current, as well as tell me that they may have found a liver. I asked him by that, does he mean they have found a donor and the transplant team is currently preparing to assess the donor and suitability of the liver, and he said I was correct. He said he has assessed my wife, given consent for the procedure, and that they are going to begin preparing my wife for the operation, should the liver be found to be suitable.

Will keep my fingers crossed.

I cry each time someone "gets the call."

A chance at a saved life...

Now I'll have to check on here every 15 minutes all day instead of every half hour!!!!!

Connie will be so pleased too when she gets finished with her own tests today.

Hugs to your family,

Carol

PS: I got the call about Mike at 5:15 PM April 30th. He went to the hospital (2 hours away), I was not in town and had to fly from South Carolina back to Florida ASAP! I got a call at Midnight that they were prepping him but that the liver was not yet a "go". The liver was flown in from somewhere. Once they have it "out" they need to check very carefully for tumors, etc. I got the call at 3AM that they were a go and were opening him. They didn't close him until 3PM that afternoon. I got to see him at 5:00 PM. Others on this site report much shorter times. I guess Mike had some extra stuff to look after, they never said.

Just to manage your expectations...this could be a really long day.

Also, I hope you are prepared for the tubes. She will have a central line in her neck. She will have a nasal gastric tube. she will have many IV's...venius and arterial. She will be intubated for a while. She will have a catheter for some days. some have more than one, but Mike had one big drain in his belly that continued to drain for some time. He came home from hospital with only the belly drain...most do. They took out the breathing tube day 2, the nasal tube later that same day.

He was in ICU for 7 days and on a TP floor for 3 more days. Some are in longer, some shorter. It seems to vary with how ill a person was before transplant....so with her problems she may be in hospital for a while.

More will chime in as you report progress....this was just to manage your expectations a bit.

If you think you've seen a lot of tubes, this will be so much more. I remember waking up after the transplant and having a dozen tubes in me. Even as out of it as I was, the look on my brothers face was priceless. He couldn't believe it. Every day a tube or two was removed, until an hour before I was released. Good luck on that liver, but be aware that there are times when the donor organ may not be the "right" one. Better to wait if it isn't. You have the choice to take it or not. Usually, the surgeon will advise as to whether they think it's a good one. You won't lose your place on the list if you decide not to take it.

OMG this is so exciting, you can count on jacksonville for prayers, Brian, I know things will go just fine :)

Godspeed and God Bless you ,  JQ, baby and family

Big hugs,
Mae

Oh my gosh. Brian how great to hear. May all this go smoothly for you and your family. Will get up right now and light some candles to light the way for this to resolve positively.

You have been through so much in such a short time. We are all behind you and praying for your wife.
Angie1953

Brian, thinking of your family...LOTS. I'll check a couple of times through the evening and overnight. I hope we'll hear from you, even if it is only 5 words. Carol

Thank you, Higher Power...some things are mean to turn out well.

Brian...Mike never looked healthier than the morning I saw him after the transplant. For the first time in 2 years, his complexion lost its horrible SICK palor. Of course he likely had a zillion units of nice healthy blood and that nice healthy liver...but is was such a relief...even with all those tubes and drains.

GOOD nite!

Carol

I'm so happy for you and your family Brian . Hope everything continues to go so smoothly .



A. Ziffle

Achalasia is a disorder of the tube that carries food from the mouth to the stomach (esophagus), which affects the ability of the esophagus to move food toward the stomach.

Brian, I am SO excited for both you and your wife. I hope everything continues to go well. It's about time that you all get a break. I am just now getting this great news, as I was sedated yesterday for a procedure and slept until around 10:30 tonight.

In terms of getting a sitter, go through an agency that bonds their employees. And ask for and check out references. Ask if the sitters have had their backgrounds checked.

As JQ improves, the tubes will gradually be removed.

Please keep us updated as you are able.

Hugs and best wishes,
Connie