Nicholas' surgery went very well all in all. The most difficult part was that we didn't get a status update until like 6 hours into it. We thought at that point it was going to be done. When they came out to status us and they said, "ok, we are just about.... " , I thought I heard the words "done" but instead... "ready to put in the rods", the doctor said. I think I was wishing it to be done so badly that I was hoping he was going to say done. Nope, one more hour at least. Afterwards, they came out and said he did great, we could see him in about 45 minutes. I thought Thank GOD, the waiting was the worst. We left Nicholas at 715 in the morning, me in dreadful tears holding on to Ray, and didn't get to see Nicholas until 430pm.
He was intubated, which we knew he was going to be, but his face was not that swollen. The doctors said it would be as he was laying on his stomach during the entire surgery so this is normal. He looked angelic. Even though he was intubated, he looked very peaceful and straight!!! His back was straight. He was under covers, but was laying so tall. We all noticed that right away. He was already different in such a great way. When we saw the xrays, we saw the miracle that took place there that day.
from my cell phone of After and Before...
We were shown his lungs, the two black oblong things near the top of his chest cavity. Note how they are both different sizes due to his spine squishing one of them. It will take a while for things to look something even close to normal inside his body.
The first few days Nicholas slept for the most part. He was on morphine, an IV, had a central line and other lines that I can't remember what they were, and had a catheter. He came off of his breathing tube the first morning after surgery. Everyone was so impressed with his recovery from day one. He was such a great patient. All the nurses oooed and ahhhed over how handsome he was and what beautiful eyes he has. He didn't seem in much pain because that morphine was amazing! It is quite deceiving actually. He was in ICU for 2 days and nights and then moved down to the Step down unit which was a lower level ICU. He was there 5 days. Ray and I traded off staying the night with him so that someone was always there day and night.
I am giving the quick version for sure. There was so much going on that it is hard to really put it down in words. We were exhausted, but we had great support from family and friends. Nicholas looked like he was 4 months pregnant due to him not going to the bathroom. It was terrible. They were giving him everything under the sun to go but they said it was very normal and we just had to wait. It did finally happen but the tummy remained swollen and large! It is finally back to normal as of today.
Nicholas is home now and we have a hospital bed from our insurance for him to recover in. Ray and I again are taking turns sleeping in the family room with him where we have his bed. We have to change his diapers throughout the night and give him pain meds as they only last 4-6 hours. I have wonderful friends who are helping take and pick up Maddie from school. It is hard to reach out but this is one time that I felt I needed to just let that go and ask for help. I am so grateful.
Speaking of my other baby. Maddie is doing great considering. She is just going with the flow so well. The Child Life specialists at Shriners were wonderful with her. Making pictures for Nicholas' bedside when she couldn't go see him. Each girl in her Daisy troop made a picture for Nicholas for us to take to his hospital room. Maddie couldn't see Nicholas for 2 days while he was in ICU so she was so excited when she did finally get to see him. She really is just as amazing as he is. She loves her brother so much. The hardest thing to do is try to give her as much attention as he is getting right now. I just don't think it is possible, I am so tired. I give her what I can and so does Ray, but Nicholas is really of course getting so much more right now. The guilt, it kills me.
Nicholas had PT yesterday for the first time and he did great considering. His pain meds though are a trial and error thing. I thought he could just take a 1/2 dose so that he could be more alert during PT but at the end he cried. I felt horrible. He has barely shed a tear during this whole thing and I make him cry because I didn't give him his full dose of meds. UGH
Over the weekend he was having back spasms so we gave him the valium the doctors prescribed at Shriners. Well, he starting having lot's of seizures. We paged his Neurologist to see what we should do. Unfortunately we had to wait it out. The doctor said he shouldn't have been prescribed the valium as they make his seizures worse. Again, guilt, felt horrible!! Ray and I couldn't keep our eyes off of him. Checking every two minutes to make sure he was breathing. It is just the worst thing in life worrying so much about your child and knowing that you caused the situation. WE gave him those meds. I know the doctor prescribed them but it still makes me feel like a horrible parent when things like this happen. He is completely, solely relying on us for everthing. When it goes wrong, it breaks my heart and I tell Nicholas I am so sorry. I just hope he understands.
Today, Nicholas is sleeping lots. Again this morning he had a bout of seizures that were "different" than his normal type of seizures. Sounds weird to say but it is true. I talked to Ray and we decided again to call the Neurologist just to make sure. We hadn't given him any more Valium since the first time we did but he was still on his Tylenol with Codeine. The doctor had told us though that he should be fine with that and since he was on this in the hospital I just wasn't sure what was going on. Anyway, the doctor said to just hang in there, Nicholas has been through so much and his body might act weird for a while. Ugh, more waiting.... the seizures finally did ease up.
We are taking this day by day for sure. I want things to happen so fast but it just isn't going to. I want all of this pain stuff to be over for my baby but I think it is going to be a long time before that happens. I am trying to look at the big picture when I get into this mode of thinking. I just have to remind myself to do so. Bless you Shriner's for giving this gift to Nicholas. We are forever grateful and honored to have you in our lives.
