Evicted from the Hospital ~Home Sweet Home~

Our day finally came, a long time in the waiting. A lot of tears and emotions leading up to this special date. We were going to be evicted from Children's Hospital of Michigan. It had been our residence for over 3 months! My little AaronMatthew was well enough to go home. I dreamt about this day and so desperately wanted my baby home and it was coming. We got to tearfully say, "goodbye" to all of the nurses, Cardiovascular Doctors and Critical Care doctors last Wednesday. AaronMatthew had been doing fabulous for the last week or so. His breathing was so much better, his color- he actually has color! His crying got stronger. It was our time.

We've been home for four days now and things are going smooth. AaronMatthew smiles a whole lot. He loves to be held and boy, we're making up for lost time. He sleeps through the night, which is great!

All this doesn't come without challenges. 

AaronMatthew is on 5 different medications for his heart, a diuretic and sodium chloride, which is a salt electrolyte. He is still on a gavage nasal gastric feeding tube and he is learning to drink out of a bottle. It is challenging for him and is taking him some time to master the technique of sucking the bottle. He does get tired frequently even though he is like a brand new baby and he still has his episodes of breathing hard and fast. 

We are on a strict schedule where he eats every 3 hours. It's 27 calorie formula and the volume is 105cc's. I measure and mix all of his formula and load it in the bottle and try to feed him by mouth and put the rest in a pump which then goes through a tube into his nose and down to his stomach. I also measure out all of his medications and put them through the tube as well. Who wants to taste nasty medicine anyways? I measure how much he takes through his bottle and record that and record how many times he has a wet and poopy diaper. I take his temperature at times and record that too. All that with a busy 2 year old bigger brother as well.

All this being said, he's not perfect, but so much better than he was before and right after his open heart surgery.

Then there is the endless doctors appointments.

We get to see his Pediatric Cardiologist at St John Hospital tomorrow morning for the first time in months. I know his doctor will be thrilled to see him as I have kept him updated weekly. We will be making appointments to see the Speech Therapist and Occupational Therapist. And we will go to an Endocrinologist and a Genetics Doctor as well. 

We have a nurse come out twice a week to see AaronMatthew.

For now, we are just sticking with the home nurse, Pediatric Cardiologist and maybe the Pediatrician until he is well enough to go on more outings. We aren't going to church, the grocery store or the convenience store for now. My husband and I are trading off. I am not risking my son catching some sort of virus, especially when it's flu season. We have been tenets at the hospital long enough. And I am going to need surgery in the very near future to get my gallbladder removed due to gall stones. 

How do I do it all? By the grace of God. That's how. He gives me His strength.

We are so very blessed to be home.