PICU Days.....SIGH.........
Well Rhett had his surgery yesterday. He did really well however with his pulomnary hypertension, he has had some problems with inflamed airways. So we had to go to the PICU. I was really hoping that we would stay out of there. It was insane last night with really critical patients all around him, I hate that place it traumatizes me. Rhett has done well though. His blood pressure gets a little high but they think it is because of the pain. He is taking pedialyte by mouth, and we are going to start him on some pediasure today.
He had a reaction to the morphine that they were giving him, and his face itched so bad that he has rubbed his eyes raw. So now they are just giving him loratab. We couldn't find anywhere to stay last night that was close by, all of the hotels were full, and we couldn't get a sleep room, so we went to a nearby Walmart and bought some sleeping bags, and a down comforter and slept in the back of our Durrango. It was only like 5 degrees out side, and it snowed, but suprisingly enough we stayed really warm, and on the bright side, it was great to cuddle with Andy all night.
They are talking about moving him from the PICU, to the surgical floor sometime today, so we are keeping our fingers crossed. This hospital is so insanely busy right now they are running out of room, and have set up part of the ER as a border unit. Hopefully we can stay clear of any infections and stuff.
They did do an Echo on his heart while he was in the OR, and it shows some pulmonary hypertension, and some valve leakage, they want to do a sleep study, because they think he may have a significant obstruction. They told me that even if his sats are above 92, we still need to keep him on the oxygen at night. Which is fine. He is really grumpy, and it makes me sad to see him go through this, but we will make it through it.
Our insurance runs out today, and with Andy being up here, he is probablly going to get fired, because he had only been working at his job for 6 days. We are taking this as a sign that it wasn't the right place for him anyways. We both felt like it wasn't right to begin with, but it was some type of money coming in. Anyways, I am really sleepy, and I better get back to Rhett. If this doesn't make any sense, I'm sorry, I haven't had more than 1hr and 1/2 of sleep at a time in over 2 weeks, since all of this started.
Thanks for all of the prayers and support. We really appeciate all of them!!!!!
9 comments:
My Prayers are with you.
If there is anything I can do for you please let me know!
I Love You All.
Love Your Friend
Shelley
I've been thinking about your little guy all day! Shaylee and I wish him a speedy recovery!
keeping rhett in my prayers.. hoping you get out of that place soon!! HUGS!!
Hi,
A friend who belongs to one of the downs boards directed me to your blog. It sounds like you have a lot on your shoulders! I can't believe you slept in your truck in this weather!
My nephew had something similar to what Rhett is suffering. My nephew had a diaphramatic hernia (diaphram wasn't developed, so his lower organs moved up into his upper body). I talked to my sis-in-law a few minutes ago and this is what she had to offer (hope it helps!):
My nephew was treated at Primary Childrens in SLC. My brother and sis-in-law were assigned a family advocate who helped sit them down to plan out everything from how to pay the bills to where they were going to stay at night. Primary's has the Ronald McDonald house for families, but other local hospitals should be able to help you find some accomodations somewhere. Also, if Andy loses his job you may be able to qualify for medicare to help allay the huge bills this will create. Also look toward the future complications that may arise and get that included on any financial plans that are arranged (eg my nephew had scar tissue left on his intestines after the surgury...the problem wasn't discovered until he began having trouble several months later). Medicaid usually covers a year at a time, so you would probably be covered.
Also, finding a place to stay in in SLC shouldn't be too hard if you can get in touch with someone. If you are religious, contact the local church leader and see what they can offer (may have a contact at a hotel, home for rent temporarily, stay at a members home/rental).
Best of luck - I hope this helps,
Shanci
...did I write "Medicare" in my previous post? I meant "Medicaid"!
Shanci
Keeping you all in my prayers. Much love & cyber hugs~
Kei, William's mom from the T21 board
Oh Pam, I am so sorry you are having such a difficult time. I don't have any real help I can provide to you but I am sending you many hugs.
I hope that things start looking up soon.
All of our love,
Rebecca and Elainah
Oh my, I will never forget the image of you sleeping in the Durango to be close to Rhett...that's what parents do, isn't it?
Been thinking about you and will continue to pray for strength, for all of you.
Wish I could do more.
Good luck and tell hubby to go back to work so he doesn't lose his job! That will just create alot more trouble! You are stronger than you think, Mom! You can handle this by yourself!
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