Thursday, December 15, 2011

We are HOME ~ Pics ~Update

Seeing I wasn't able to post pics on here from the Hospital's network, and now that we're home I thought I would update you guys that don't follow me on Facebook with some pics.

Mr Hot box in the local ER ~ We left there with a Dx with Tracheitis, from being there for 6 hrs
Mr Kissy face the next day down in CHOW after being admitted for Pancreatitis The next days ultrasound showing ~ 3 Gall Bladder stones along with thickening wall and sludging. I'm not sure how they see all of that but I do see the 3 stones. I was told that this is an issue that needs to be taken care of, BUT it may not be the reason why his pancreatitis flared.My beautiful baby girl all dolled up to sing in the Christmas Concert for school
What a great Concert it was....I'm so glad I went :) I missed her so much. I'm so proud that she is very good when I am gone.
Our suite for the 11 days.
This is the first time he's ever been stapled. I thought they used the same incision as the Nissen but they ended up lengthening it. His very bloated tummy, sporting his new Gtube pad.
A couple day post op looking very good ~ especially with his blue new Trache n Gtube pad :)
The very large Hematoma in his groin from the CVL they put in just in case he needed blood or other things for extra access. Which is as painful as it looks for Danny's reactions :(
I can't even begin to tell you how exhausted I was last night slipping in my OWN bed. I don't even remember my head hitting the pillow. We were discharged Wednesday morning and we were unpacking the very full van (how does one acquire so much stuff in the hospital?) by 12:30 :) I was on a mission to get it all done before the Home Health company came by with all of Danny's TPN and IV supplies. Even though we are home he still isn't running on all 10 cylinders yet, but we are comfortable with doing TPN and blood draws at home. We sure are an ICU room now....all the pumps, vents, incision care, monitoring and Port access. It's all worth it just to be home :)
We did run into a snag with the Home Health company that brings his supplies. I had called once I noticed the supplies I ordered, before we were admitted, weren't here at the house. I was told they are no longer going to support us with Danny's supplies or equipment because we went with a different Home Health company for his Vent. Mind you they changed manufactures on their vents and CHOW doesn't support theirs I had no choice to go to a different company to get what we needed. This my friends was their "out" and wash their hands of us. They don't make enough money off us ~ so drop us this first chance they could. Gotta LOVE the system~ NOT! Of course the cowards didn't tell me this when I placed the order and I had to find out when I'm OUT of supplies. One being his formula, sigh! A formula that I just can't go buy at the store because of his allergies and sensitivities. Luckily I found out the pharmacy will order it up for him :) What a pain in the ass, I have worked with them for the last 7 years you'd "think" they would respect us enough to not jeopardize my son's health an weal being. WHATEVER!! This coming from a company that I used to get EVERYTHING from, his supplies, food, the ceiling lift, the wheelchairs, the standers, everything. Their loss as I will NEVER go back to them, EVER!! Not how they treated us in the end and it's over something that was out of my control....they couldn't get us what he needed.
Well I'm not sure how LONG we'll be home as my Mr Social Butterfly. I believe, is planning a Round Robin to head back to CHOW. This morning something triggered him to go into a screaming mess. He was crying, spastic, sweating, tremoring it was very scary to watch and VERY heartbreaking. His RR was 84, HR 184, and sats slowly decreased so we called up Dr Kasper for his wise words of wisdom cuz Gail n I were ready to call 911 (I wasn't going to call Dan and see how long it was going to take him to realize his pager was dispatching to his own home....Yeah I know mean, but kinda funny??) Thankfully Dr K picked up the phone and ran right over to our house. We gave MANY drugs to help him with no such relief so we doubled some of them and then it kicked in. He was snowed finally which meant he needed to go back on the vent cuz his sats dropped down to 76, seriously my nerves are shot!! Unfortunately the med relief hasn't lasted too long as I see he's trying to open his eyes, I just hope he stays comfortable. He should have been out for hours, but no! I'm not sure what today is going to bring, but we'll have a better idea once the labs we drew, while Dr K was here, are in. Needless to say my mind is thinking I should start to pack up the bags again as this party might continue back down in CHOW. I DON'T want to go back! Even though I've been just talking up the wonderful care we received this admission, I don't want to go back this soon!! One day home just isn't enough for us. What a roller coaster ride this has been the last 2 weeks. I'm not sure how much more I can remain "stress free" ~ HA! before my MS starts to act up. I know I'm not running on all my cylinders either, but I do know I can get alot worse too :( The roller coaster is set in motion so hold on....hell put your seat belt on too.
Please keep my family in your thought n prayers. All I want for Christmas is .......... HOME together with ALL my family!

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