Nathan's Journey through Cranioynostosis

This is a video montage I made for my little man.

Make video montages at www.OneTrueMedia.com

Home at last!

HOME AT LAST!!!! It feels sooooo good to be home! After 5 days in the hospital, I am happy to have my little dude back in his own bed. He had some good days and some not so good days, but once he got his eyes opened he was a totally different boy! His demeanor changed dramatically! I'm going to post some links to the photos I uploaded on to Facebook. Thanks for your thoughts and prayers. He still has a long recovery road but he is doing great!

Day before surgery
Surgery Day
Recovery Day 1

Recovery Day 2
Recovery Day 3
Recovery Day 4

Still in the hospital...

Well it has been a couple of days since I've been able to update. Nathan is still in the hospital. The last couple of days have been up and down. He's been running a fever anywhere from 37.8 to 39.8. (100-103.6) When he has a fever they have to recheck every hour day and night, when he doesn't they only check every 4 hours. It makes for long nights when they check every hour. His incision is healing nicely. I tried to count the stitches but I keep loosing track. It's a lot. His swelling is going down. Last night he was able to open one eye and has been slightly happier since then. My mom stayed with him last night so that I could come home and get some sleep. Yesterday they were talking about letting him some home on Tuesday (today) if his fever was under control and if his blood work numbers came back good. This morning they drew blood and his hemacrit level was in the 20s. I don't know what that means but we should find out today if he'll need another transfusion. I am waiting to go back to the hospital now. I tried to go earlier and had a flat tire. Definitely not what I wanted today! I think that is everything that has happened really. Just trying to control his temp these days. Thanks for the prayers!

PICU update

Good Evening. I am updating this from the adult hospital next door. I have been kicked out for shift change. Currently Nathan is still in PICU but is being moved to a real room! Originally they told us he was staying another night but changed their minds. I think they are moving him because a trauma came in  this evening. It was very hectic in there. He is still getting morphine (he hates the initial push of the meds) and tylenol. His temp is still at 38.9 (102.something) That is semi-normal for a big surgery like this. He has kept his food down today! His eyes are swollen shut and they are black with a hint of purple. Literally. That's about all I have time to say right now. I need to go be with Nathan when they move him. Update again tomorrow. Good Night.

Surgery is over!!!!

I'm finally getting a chance to update on his surgery. Everything went great! We had a slight delay this morning, but our doctor found him a bed in ICU so surgery went on. Nothing unexpected happened. They said it was uneventful. He spent about 3 hours in recovery because during his surgery they gave away his bed. No big deal, just inconvenient. Of all the things that could have gone wrong that was not a big deal.

We saw him about 1 hour post op and he looked swollen already. He did get a bottle of Pedialyte at 4 which he threw up almost immediately. He was given some Tylenol/codeine for his pain. It was pretty uneventful in recovery. He was moved to PICU at 5:30 and he started getting very fussy. I could tell he was hurting but there was nothing that could be done as far as pain management with out a doctors orders. I had to leave for hsift change at 6:30 and decided to come home and rest. He's gonna need me a lot tomorrow and I need to be rested. Thank you to all those who sat at the hospital with us. Much appreciated. I'm heading off to eat some dinner and go to bed. I'll upload pictures tomorrow. Bye

waiting update 10:45 am

They called us again and said that the neurosurgeo

n (Dr. Dilustro) is finished with his part and the plastic surgeon (Dr. Magee) has taken over. Everything is still going well and he looks fantastic.

waiting update 9:45 am

The nurse called us and said everything is going great!

Waiting in the waiting room surgery day

Good morning! We are sitting in the waiting room still. We got here very early this morning at around 5:30. At about 7:30am we were told that there were no beds in the PICU and it might be a couple hours until they can even start his surgery. Nathan was getting antsy and hungry by that time. We left Nathan with his grandma and went to grab some breakfast real quick. My mom called as we were leaving saying they were ready to take him! It was only 8:30! They took him back to the operating room. We are still waiting.

Nathan's first haircut and prep for surgery

We shaved Natey boy's head today. All of it! No hair left on his cute mishapened head! If you had been our neighbor you probably would have thought that there was bloodshed happening in our house. Nathan cried and cried and wiggled and squirmed. Daddy did most of the shaving. He left the last bit of mohawk hair on top for me. Now that his hair is gone you can really see the mishaped head. Also you can actually see the ridge of bone on top. Previosuly I had only been able to feel it and not see it. Nathan sure has an odd shaped head. He's cute as can be though! He's down for the night now and at about midnight I will wake him up and give him one last bottle. I probably won't sleep well tonight but if I do manage to fall asleep, I will be up again at about 4:30 to get ready and leave. Well 4:30 is fast approaching and I still have so much left to do. I'm leaving you with a picture of his first haircut and you can see more in the album! Good Night. I'll update this as I get updates tomorrow.

Nathan's Pre-op visit

Nathan had his blood work done yesterday. He was a trooper up until the needle was in his arm. Eh, at least he was brave for a moment. lol. The nurse got the IV in with just one poke, unlike the 5 it took last time. He and I were very greatful for that! He got a sticker and a stuffed animal for all of his tears. I have to admit CHKD is great doing little things that make the kiddos happy!

Today Nathan had his pre-op appointment. We told them last week we didn't need an appointment since we had no questions, but yesterday they called and said to come in at 10am. My husband got home from work early so he could be home with Brian and I rushed out the door at 9:40am for a 10am appointment! If you know VA then you know that the tunnels here are notorious for horrible traffic. Well not today! Just a little traffic! I'm not sure what time I actually got into the office but my parking stub said 9:55. Lucky me! so anyways, on to the appointment. We were supposed to meet with Dr. Dilustro but he was still in surgery (don't want to rush that) so we had to meet with Dr. Magee instead. He walked me through the surgery again and explained what they did in all of its glorious details. I'll spare you on those.
Then we saw their pediatrician so that Nathan could be cleared for surgery. Nathan is in good health and in great shape for surgery! The only thing that would cancel it is if he gets a fever of 100.2 by Friday. Hoping for no mystery sickness in the next few days. The doctor also agreed with me that Nathan might be a bit behind in his gross motor skills. You might call me crazy but I have learned to listen to that mother's instinct and I just know that there is something not totally right. He told us to contact Early Intervention and get the ball rolling. It's better to be tested and not need help than to need it and not get it. So that is my job tomorrow!