Home!

Saturday night - So I guess the last time I posted was Saturday afternoon after Collin opened one eye and had shown some signs of getting his personality back.  Max came to the hospital that afternoon - we didn't let him go up to see Collin but Matt and I got to spend some time with him and go to dinner. That evening he continued to improve and the swelling went down even more.  Not sure exactly what time but his other eye opened that night as well, so we knew we would be heading up to a regular room at some point on Sunday.  Collin also had his last dose of morphine in the early hours of Sunday morning.  They had been backing off of it all day and he really didn't seem to be feeling that much pain after his eyes both opened.  At that point he was only taking antibiotics and tylenol with codeine.

The plastic surgeon on call came by Sunday morning and said everything looked great and took his drain out.  We found out our new room number and they got Collin ready to move.  He was still attached to some monitors and IVs and all of that had to come out/off before we could go up.  Matt was home sleeping (it seemed like all the big stuff happened when he was home sleeping!) so Aunt Em and I moved all the stuff up to our new room.  We were in the biggest room on a wing that had only opened 3 weeks ago.  There was a couch that folded into a bed and a large sleeper chair.  The bathroom had a huge walk in shower and there was a flat screen TV and refrigerator in the room!  I've never seen a hospital room so nice.  The best part of moving up to the floor was that I finally got to hold Collin for the first time since sending him back for surgery Thursday morning.  I think he was pretty excited about it too.  I'm not sure if I ever explained that he had been confined to a car seat sitting in a hospital bed/crib.  They use the car seats to keep their heads elevated to help with the swelling.  So I'm sure after 72 hours of being in one position he was just happy to be held and not in that seat! 

One of the things we were concerned about during the three days in ICU was how little Collin was eating.  The first night after surgery he ate (drank) a good amount of formula but after that he didn't seem interested in it at all.  He would drink a little apple juice or a couple ounces of formula here and there, but nowhere near the amount that he normally eats.  He also wouldn't eat any baby food.  Once we moved up to the room he did eat a jar of sweet potatoes but refused to drink anything.  Between the time we got up to the room and midnight on Sunday he only had about an ounce of liquid.  The nurses were getting worried about dehydration and started talking about hooking him up to IV fluids.  I asked them if I could try to make a bottle out of his powder formula instead of the pre-mix formula they had been trying to feed him.  Apparently he knows his formulas because he immediately sucked down 6 oz!  Thankfully that was enough to keep them from running IV. 

So even though our room was much more comfortable than the ICU we knew that if we were going to make it through the rest of the week Matt and I needed to each get a bigger chunk of sleep than 2-3 hours.  I decided to get a hotel room for Sunday night so Matt could go first then switch off with me at 4am.  That would give us each the opportunity for 7-8 straight hours of sleep.  I ended up getting a great deal on a hotel downtown on priceline and Matt went to take his turn.  He woke up refreshed and ready to go around 2:30 am so he came to relieve me.  I got to the hotel and had trouble going to sleep - Collin had actually slept fairly well in the room so I had already had a couple of hours.  I finally drifted off around 4:30 I guess...and by the way...the doubletree beds have to be the most comfortable beds on the planet.  Or maybe sleeping in a fold out chair in the ICU for 3 nights will make any bed seem wonderful.  So my phone rang at 7:20 and I was terrified thinking something had happened.  It was Matt saying that Dr Kelly (collin's surgeon) had come by and said it was time to go home!  I was in shock!  They've been telling us 7 days all along but I really felt like it would be 5, which would mean we would go home Tuesday.  I never expected to go home less than 24 hours after moving to a floor.  I was terrified - not sure of how we were going to manage to keep him from hurting his incision. 

The nurse told us basically we have to be within arms reach at all times when he is awake and moving around and if he is standing we actually have to have hands on him.  He also has to sleep in his carseat.  We've got it over in his crib propped up by pillows and it's got some extra padding.  He also has to wear a foam donut around his neck while he's sleeping to keep him from pressing up against the side of the carseat where his incision is.  Scary as it was, we got home yesterday around 11am and things have been going well so far (considering)! 

He is almost back to normal on the amount of food he eats and he's sleeping fairly well in the carseat.  He was up twice last night for about an hour and a half each time but he went to bed at 6 and was up at 8, so we really can't complain about him getting 11 hours of sleep overnight!  It is a challenge, and exhausting, when he is awake to keep him from falling down.  We've already had a couple of spills but nothing bad.  We really just have to crawl around with him and not look away at all.  You don't realize how independent your children are until they can't be...I mean, you can't walk away to pick up your phone unless you take him with you or someone else is there to catch him if he falls.  I think that will get easier over the next few days as he gets less and less medicine and his body isn't working so hard to heal.  He isn't nearly as steady as he thinks he is.  I'm sure his head being twice normal size doesn't help matters any! 

Well since he is resting I think I will go get some more rest myself.  Who knows if he'll sleep as well tonight!  More soon! 

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.