From the Hospital

I am sorry I didn't post anything sooner about Isaiah and his surgery. Today is day 3 and I am just feeling like I can manage something.

Today I sit here next to a sweet, cuddly, fussy, gentle, little boy who is refusing to eat and barely drinks. He is sad right now as he wants Daddy. All the kids and Daddy came by for a few minutes to say hello and he is sad that Daddy didn't stay. On the same token, Ellie who came with Daddy, is sad to have to leave Mama at the hospital. I will be so glad when this all over and we can all be back home. In the mean time I will do my best to make his stay comfortable and secure.

Surgery was Tuesday October 8th, with a tentative start time of 12:30. It ended up starting at 2:30 instead. He was very out of sorts and not happy in his sweet, quiet way. He didn't begin asking to eat until noon and I just keep telling him, "I am sorry buddy, but you can't eat right now". The saddest part was when I tried to take off his shoes when we first arrived at pre-op at 10:30. He instantly panicked and began begging me, "No, Mama...No Mama" and shaking his head with big tears. After we weighed him in his diaper the nurse said to go ahead and put anything back on that made him feel more secure. I ended up putting on his shirt, socks and shoes. When it was close to surgery time they gave him so Versed to help take off the anxiety and help him forget going into the OR. The interesting thing was that he would still not let me take off his shoes. He panicked each time I tried, so I carried him back to the OR (he was smiling at that point) with his shoes on. They took them off after he was asleep. This picture below was minutes from us taking him back to the OR and I tried to take off his shoes one more time. He is crying and signing "shoes". Poor sweetheart.

The surgery lasted almost 6 hours. We saw the catheterization doctor after about 2 hours and he said his part went really well. They were able to stent the left pulmonary artery to almost 3.5 cm. He said all looked good and we should plan on another cath in 3-6 months to make sure it doesn't close up and see if they can open it up some more. We had a great surgical nurse, who kept us very informed with personalized visits and phone calls each major step of the surgery. The entire surgery his vitals were good and he was very stable. When they closed him up they did say he lost quite a bit blood, due to previous scar tissue from other surgeries, so they gave him so blood for that.

Isaiah had 5 IVs including the vein in his neck which had several medicines going into it. He was intubated for about 18 hours and had 2 drainage tubes under his incision. It was a blessing to see him stable after surgery but hard to walk away and leave him that night for me as his Mama.

Jay stayed with him the first night. I came in during the day. Jay stayed the second night and I have come in, likely for the remainder. It is so hard to be away from Ellie, Asher, Lenea, Toby, Moriah, and even my big kids. I miss them all so much. I had hopes, as the doctors thought, that he will get to go home by weekend end. However, it seems there is a fluid building up around one lung so they have put him on more diuretics to try and take care of that.  I know he will do so much better at home but we want him to be safe too. He seems a bit depressed and doesn't do well with any transition here.

For instance, he was happily sitting up with me last night, watching a Baby Einstein movie on my lap top. He was even talking and smiling for the first time since being here. Then it was time to graduate from CICU up to a regular hospital room. That is great news for him and it is so much quieter and more restful. But he didn't understand that and began panicking again as we wheeled his bed down the halls. I held his hand the whole time, assuring him it was okay and we were just going to a new room. The look in his eyes told me "Mom, I am scared, what is going to happen next?". So when we got to our room, it took a good 2 hours for him to not be so scared again. Of course, a lot of that included seeing new faces, being poked on a bit, etc. I am trusting that all of this will bring him to lean on me just a little bit more.

I took a few pictures with my camera but I don't know how to get it off right now, so these are all I have to share right now. This was day and half after surgery