Rough Night, but Getting Better by the Minute!

Hi all!  Sorry for the delay between the last and this post.  Yesterday and last night were rough...much worse than we had anticipated.  Due to a lot of outside factors, there were some times overnight that Collin didn't get the pain medication he needed in a timely manner.  It is a blessing to be one of the least sick children in the ICU, but it also means the attention of the nurses is elsewhere.  While we understand and certainly want them to do whatever they can to help those other families, it is hard to see your baby in pain, even if it isn't as bad as someone else's.  But we're past all that now.  I may take the time later to detail the events of yesterday and last night, but right now I want to focus on the happy stuff!

I think my baby is coming back!  He has started sounding like himself again...until this morning he was hoarse and only made sounds when he was upset.  Now he is starting to sound like the loud and feisty Collin we recognize.  The swelling is also going down!  I asked the nurse this morning and she said it's only because I've seen him constantly for the last couple of days, but other people have noticed now too.  Yesterday I had to look at his feet or hands to recognize Collin.  Today his face is starting to look more like normal as well.  Even this morning his eyes were so swollen that his eyebrows were completely stretched out, but now his eyebrows almost look normal and we can see eyelashes again!  I am here by myself right now because Matt is home sleeping and I so want someone else to be able to witness this!  It's truly like he is changing by the minute.

He really didn't eat anything yesterday even though they stopped his IV fluids to make him hungrier/thirstier.  This morning they had to feed him with a medicine dropper, but he's just finished a small bottle of pedialyte and formula for me!  Nothing like the four 8 oz bottles we're used to seeing him suck down, but this is definitely progress.

One thing has me the most excited...and really brought on the happy tears...He got restless a few minutes ago so I gave him a book that has a lot of different textures and he was actually playing with it.  He was moving it between his hands (not easily as he still has restraints on his arms to keep from pulling wires out).  I asked him if he could do Patty Cake for me and he brought his hands together!  He's obviously not able to clap like he normally would, but I could tell the intent was there.  He was playing!  He tired out pretty quickly and went right back to sleep, but for that couple of minutes he was actually being a little boy and playing!  I can't wait until Matt gets back...Collin responds really well to his daddy's voice so I feel like he will perk up when he gets here.

I know we have so much hard stuff to come and we're definitely not out of the woods yet so please keep praying.  I just had to share a few happy thoughts for those of you who I know are craving good news about our little guy.  More soon!

Day 2 begins

Well the first night is behind us. We finally got into a room in the ICu around 430 yesterday. Collin's pain level is being managed here with Tylenol/kodene and morphine. He has been eating 2-4 oz of formula every couple of hours...sometimes it soothes him to eat when he's not ready for more pain meds. We had a great nurse Josie when we got here yesterday and Natalie took over last night. We will have Natalie again tonight. She has been great. Unfortunately we didnt get a sleep room last night so we switched shifts between Collins room and the family lounge that has chairs to pull out into beds. I think we both feel like we got a little over 5 hours sleep which is more than I've had the last few nights, so not bad! Collin did have fever throughout the night which they say is typical. Around 5 this morning he seemed to be very agitated and in a lot of pain. The nurse told me this is probably the peak of his pain level. Good to hear that it will get better but it is still heartbreaking to know he's in so much pain. Btw, I realize I am all over the place with this post but I'm trying to include everything as I remember it. The doctors came in around 630 this morning and tool off the big bandage covering his head. Now we see a big bald head with an incision ear to ear. He actually calmed down tremendously after the bandage was removed. His heart rate dropped by 10 or so points which was a good thing. It should be easier to regulate his temp without his head buried under 5 lbs of gauze. The swelling is bad right now. That is the hardest part to see. His eyes are swollen shut, will probably stay that way for a day or two. He definitely doesn't look like my Collin right now. They say the swelling hasn't reached its peak yet, that should come later today. Then it will begin to decrease and his eyes will open again. He really seems to respond well to Matt or me being close to him, rubbing his leg, holding his hand and singing to him when he is upset. I guess all those other senses kick in when the sight is gone. We've been told the first 30 hours in ICU for these surgeries is the worst, so please continue to pray for our little man throughout the day today. Pray that he will continue to be able to be comforted and that the doctors and nusrses will be able to keep his pain under control. More later...

Surgery over, according to the dr everything was perfect. We are in recovery right now and he looks almost normal other than the bandage on his head. He is awake and breathing on his own. Already drank 8 oz of apple juice and wants more! They gave him some more pain meds so he is resting now. We will be here until a room becomes available in the PICU, which could be a while but definitely today. It is such a relief to be on the other side of it but the hard part is coming now. He is in a car seat to stay elevated with his arms strapped down. He will stay in the carseat until we move up to a regular room. I expected him to be completely sedated for these few days, which was honestly a little less scary. I hate seeing him awake and frustrated because he can't move or do what he wants to do. The dr explained that the first week at home will be a challenge because he will need to sleep on his back...this child has never wanted to sleep on his back. They said he may learn to sleep on his back in the week we are here but if not we may have to make him sleep in a carseat. We're hoping that's not what happens. I know we've got a lot to happen between now and then but I wanted to post everything as we find out so we don't forget! Oma and Jiggs, Gamma and Poppy and Aunt Em and Aunt Bri have all been back to see him. As I was leaving the last time they were about to give him some formula which will hopefully make him a little more comfortable. I'll post more later when we get into the PICU.

Surgery is underway. They took him back to be put under anesthesia at 730 and we got the call that the neurosurgeon has begun his portion around 9am. He will make the incision and ensure the brain is taken care of. His part will take around 45 minutes then the plastic surgeon will take over for te bulk of the surgery. Anticipate surgery to last until 1130 or 12, but it could be later. Will try to update as we hear more.