Arscott Adventure: Congratulations...you have a newborn......

We were released yesterday, Feb. 13th from the hospital. We had spent 19 days there. The Nurses were my angels in white coats...and sometimes blue plastic draps, gloves, and masks, depending upon the many times Gus was placed on germ alert. When this happened, everyone that entered into the room had to take precautions.
I had to take a 'discharge care givers' class. The information is overwhleming but thank goodness, I was given handouts to go in the three ring binder they gave us on the class before admission.
I have to admit the goodbyes were filled with smiles and tears. You don't spend 24/7 for 19 days without forming some intimate relationships. These nurses held my hand when I couldn't handle some things like poop, vomit, and other strange odors that made me gag and leave the room. They took care of Gus like amazing nurses do. They didn't let anything bother them. They were so caring and giving.. We told them over and over again how much we appreciated them and how much we will miss them.
The main thing the nurse, Kriss, explained to me very firmly is that " YOU ARE NOW TAKING HOME A NEWBORN BABY".....or at least think of things that way now. Gus has a completely new immune system that is still very weak. It is still growing and recovering so there are a lot of precautions he still has to take. He has to wear a mask any time he steps out the door of our room. He washes his hand multiple times a day. She told me that I was now to become a GERM-a-PHOBIC. Everything gets wiped down multiple times a day with Lysol wipes. He can not eat out. He has to have foods that are only pasteurized. It took me almost 90 minutes to grocery shop last night because I was reading so many labels. Besides, he is still having problems eating and holding down foods, so I am looking for high caloric and small, frequent meals. It is a challenge. Ensure has become our best friend. He must protect himself from germs, molds, bugs, viruses, and every other micro thing we can't see. Hehehee.... OK, that is the way that it feels.
I should also update that Gus had to have a brococopsy done of his lungs. It is like a colonoscopy except they go into the lungs down the throat/wind pipe. It was not a very comfortable procedure but he endured it. We found out that he has Pneumocystis Pneumonia, also called PCP. It is rare but it sometimes does happen with Transplant patients. It can be treated with a high dose antiobiotic for a long time. Gus has such a long medication list, I had to make a spread sheet to keep track of everything.
I forgot to add in that when we got all of our stuff back down to the car, our car wouldn't start. We had to have the security guard come and give us a jump start. I thought that I was being helpful that everytime I had to go down to the car, in the underground parking garage, I would start if for a few seconds to make sure it would start. Since, we were parked under ground, I didn't want to run it too long because of the fumes. Hence, I drained the battery Gus said. Thank goodness for the security guard.

Today, Feb, 14th, he had to follow up in clinic. Gus was very weak and had to use my walker to sit on once. After he got his initial lab work done, the results came back that he was dehydrated. We then had to go over to the infusion clinic where he received a bag of fluids. He felt a bit stronger after the IV and we returned 'home' to the lodge. He will follow up again tomorrow with some more labs and more IV fluids.

At the lodge, they had a musician named Jim Jensen, from Logan Utah, come in and play some music on his accordian, they had sugar cookies out that we could decorate and some one brought in dozens of bouquet of flowers for the residents here. I took a picture of them because we can not have any live flowers in our room around Gus at this time. The Jim that played gave Gus a music CD of his.
It has been a very different "Valentine's Day' but it is what it is.
My mom will be flying in from Fla tomorrow to spend a few days with Adam. I am thrilled about that. Adam is struggling being alone. He says he is OK, but he has skipped about 50% of his classes since we have left. Not a great way to make it to graduation. I think that it will help to have my mom there for a while and then we will be hoome not far behond after she leaves. I will miss not seeing her but I am grateful that she will be with Adam.
I know this blog is all over the place. I am very tired and it shows in my writings. We will get on a better schedule now that we are back at the lodge and only going in to the clinic for outpatient follow ups.
I think this brings me back up to date. I better get back to my 'Newborn' who now has a 19 old day immune system.......
Enjoy these pictures ..

Waiting for the security guard to come help us with the car.

Shay, Gus and Kriss......only two of our wonderful nurses.

Chidi and Gus. She was our nurse during the transplant and was extremely good when Gus' blood pressure started going all of the map. She was calm and kept us calm too.