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Toxic Hepatitis? Desperate for answers, Part 3

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Posted 2/13/2013 5:01 AM (GMT 0)
Please continue posting here.
Posted 2/13/2013 1:28 PM (GMT 0)
Brian, Was glad you had a minute to post yesterday. Hoping the baby doesn't have an ear infection, though you are wise to have her checked out before taking her on a long flight! When my oldest was a baby, each time I was certain she was turning into a monster instead of my sweet baby...it was an ear infection!

When are the flights? Best to you all,
Carol
Posted 2/14/2013 1:17 AM (GMT 0)
Connie, could you please leave a link to this new thread at the very end of the last one? I have a few close family and friends following here as well and I am not sure if they will all know where to look to find this new thread.

I took my daughter in to see the pediatrician this morning. There was no waiting whatsoever; got right in. Doc says everything looks great, ears are fine. She said to just make extra sure that I keep her hydrated with the addition of the solid foods.

I spent the rest of the day in the room with my wife, and we all took a nap. Wife is still doing fine, although standing is difficult right now due to the gigantic busted blisters on her ankle that are still healing.

Air evac coordinator finally called and is in process of buying our ticket back. Will be flying out on Friday. They reneged on their original promise, and instead of getting 2 seats, my daughter has to ride on my lap, and I have to pay $100 for a fee that the airlines now charge for lap children. Luckily though, the flight they did get me is a non-stop flight from here directly to Seoul. Hopefully they will have a couple of vacant adjacent seats and I can just call and have them block one of them, sneak the car seat in, and put her in it next to me.

Tomorrow will be a mad rush of sorting through the ton of luggage I've got. I am going to need to slim down from 3 bags to 1, and bring the remaining 2 bags to leave in my wife's hospital room. I'll want to be able to carry/pull everything on my own on this trip. The pack n' play has been a dear and wonderful convenience since day 1; I'll hate having to leave it behind.
Posted 2/14/2013 2:41 AM (GMT 0)
Brian, I'll try to provide a link.

Are the water blisters that JK has the result of severe edema in the lower extremities? I had that, also, after they had to open me up again...water blisters on the left and blood blisters on the right. The water blisters took awhile to heal, but they finally did and there is no discoloration. I can't say the same for the blood blisters.

You are really good at planning, so hopefully your trip will go smoothly. And I do hope you are able to get an adjoining free seat, as that is a really long trip to have your baby on your lap. Remember to take a couple of new toys. With any luck, she will sleep through much of the flight.

Thanks, as always, for keeping us updated.

Hugs,
Connie
Posted 2/14/2013 5:45 AM (GMT 0)
Thank you. Yes, water blisters. Inner ankle; both were originally about the size of a baseball. I hope they heal up soon.

Flight is only 50% full, so I should have no problem sneaking the car seat on. I am sure the flight attendants will have time to provide my daughter with plenty of motherly attention as well if needed (Korean women are crazy about babies.)

Post Edited (Brian74) : 2/14/2013 12:40:28 AM (GMT-7)

Posted 2/14/2013 5:47 PM (GMT 0)
That's what my water blisters were like...around the ankles and a couple on my foot. And they were very painful. At least JQ didn't have blood blisters, which are much worse.

Good to know that things are working out for your flight. When do you expect to leave? Has JQ made a decision about feeding tube vs stoma (hole in tummy?)

Hugs,
Connie
Posted 2/14/2013 6:50 PM (GMT 0)
Flight should leave around noon. JQ just had another botox series and CT today and they say her stomach looks normal. They are going to keep up with the botox for now and see if any results come from it. The doc said if she can even just get down ensure by mouth, then they will try and avoid the tube altogether. Otherwise we will go with the tube until later on when we can pursue surgical means (ie: heller myotomy).
Posted 2/14/2013 7:57 PM (GMT 0)
I really hope that this works out for her. It would be great if they could get her to the point of oral Ensure. I don't like the taste of it, so after transplant I was told to drink Carnation Breakfast Essentials (formerly known as Instant Breakfast.) I still drink it once in awhile when I don't feel like eating. It has the same nutrients as Ensure, but fewer calories.

Hugs,
Connie
Posted 2/14/2013 10:06 PM (GMT 0)
Wow Brian... keep on a pluggin.. prayin for you and your family today... Sandia
Posted 2/15/2013 2:28 AM (GMT 0)
Kinda irritated; I ordered Valentine's Day roses for my wife yesterday, and paid a quite a high premium for the promise that they would arrive today. Was really hoping they would show up while I was in the hospital with her this afternoon, but they never showed up. I tried to call the company several times with no luck. Later this evening I get this automated phone call saying they "tried to contact me, and since they couldn't reach me, the roses will be delivered tomorrow" Whatever... Why not just admit you were unable to provide some of your customers with their orders on time due to an unexpected high demand? My rant for the evening... mad

I will be off to Korea in the morning. The next 2 weeks are going to be insanely busy, so I may not be posting as often. I will keep the updates coming as I get them. Most of it will be what I hear from my wife. Right now we just want to get this achalasia under control and get her eating right over the next few weeks. Thanks again for all of the support.
Posted 2/15/2013 3:01 AM (GMT 0)
Brian what a let down... after all you've been through what a nice thing that would have been.. omg.. what a gesture thought Brian after everything... to think of Roses... you're a stellar kinda guy!!! and dad too!!! Hang in there.. she'll love them tomorrow also!!! later Sandia
Posted 2/15/2013 4:24 AM (GMT 0)
You won't be there, but your roses will be.
Posted 2/15/2013 4:36 AM (GMT 0)
No worries, I am over it... My wife has this great sense of humor. That's what attracted me to her in the first place. She has these stitches now, and she noticed it really hurts now when she laughs. That's a dilemma, because it was awesome to hear her laugh again today for the first time in months. She was always the biggest fan of my jokes, and she still (painfully) is.
Posted 2/15/2013 6:50 AM (GMT 0)
Brian, at Mayo, flowers and plants are prohibited in transplant patient rooms and also at home. This is due to possible mold spores. The day I was discharged, my BFF sent me a lovely bouquet, but I had to donate it to the lobby of my apt. bldg. But if they didn't deliver because they were overloaded with orders, they should have called and let you know.

Have a safe trip. We will look for updates, as you are able.

Hugs,
Connie
Posted 2/15/2013 4:08 PM (GMT 0)
omg laughing and stitches... I can feel the pain now.. three c-sections and laughing... yes.. laughter can bring so much brightness to the day. great to hear she's recovering so that she can laugh... nothing more contagious that great humor as you can tell by our forum family here... keep pluggin... Sandia
Posted 2/16/2013 10:38 AM (GMT 0)
Back safely at my home in Korea. I've found I prefer flying in an Air Force cargo C-17 over a commercial flight any day, and it appears my daughter does too. Wife got the roses and was ecstatic. These last 4 weeks make it seem like I was gone for several months.
Posted 2/16/2013 12:32 PM (GMT 0)
Glad to hear!! You must have a million things to do. Roses are amazing any time of the day or year!! So glad to hear your flight went well. Sandia
Posted 2/16/2013 7:13 PM (GMT 0)
Brian, thanks for letting us know that you and daughter made it to Korea okay. I had a friend who worked for Fed-Ex and she used to take the cargo flights back and forth from here to NY.

Good to know that JQ received the roses.

Be well and post when you can.

Hugs,
Connie
Posted 2/19/2013 2:08 PM (GMT 0)
Brian,
Glad your wife got her roses. You have so much on your plate and seem to be doing such a good job. What a good husband and father you are. JQ is lucky. It's good to read some good news here. Take care.
Angie1953
Posted 2/19/2013 4:45 PM (GMT 0)
I sent my wife a link to this forum; she finally got a chance to read the details of what we've been going through the past month (hard for her to remember much of it).

When she feels up to it, I am sure she will log in so she can meet you wonderful people as well.
Posted 2/19/2013 6:33 PM (GMT 0)
Brian, we would love to hear from JQ! Is she still at Walter Reed?

Hugs,
Connie
Posted 2/19/2013 8:50 PM (GMT 0)
Yes, I agree hearing from your wife would be great.
It sounds like she is doing well, I think everyone is glad to hear that.
Posted 2/20/2013 12:58 PM (GMT 0)

hep93 said...
Brian, we would love to hear from JQ! Is she still at Walter Reed?

Hugs,
Connie

Yes, she is still at WR. She will be there until I get back from Korea in another 2 weeks, and then we will transition to a nearby Fisher house for 30 days for her outpatient treatment.
Posted 2/20/2013 7:33 PM (GMT 0)
Brian, I'm glad to hear that everything is going according to plan. JQ will be so much better in 2 weeks, and even better and strong at the end of the 30 days.

Hugs,
Connie
Posted 2/23/2013 10:51 PM (GMT 0)
Brian, what are you hearing from DC?  How is the baby?  You getting back to the US this week? Carol
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