raising hunter: Update

We've been in Ohio/Kentucky for just about a week now. This trip my mom came with Hunter and I so that Jeremy could stay home for work. I can't thank her enough for helping out on this trip...thank you, mom!! Lots of stuff to go over..here we go..

We arrived here last Tuesday and got settled in to our hotel room. We don't have the same awesome city view as we did before but our new freeway off ramp view has been much more entertaining for Hunter as he LOVES watching the cars and trucks go by.

The next morning we arrived at the hospital around 10:30, he was scheduled for the OR at noon. Poor kid was so hungry and generally not in a good mood at all..and nothing was working to keep him happy in our tiny little pre op room. He didn't want bubbles, cars or the farm animals the nurses brought in for him. I think he is on to us about these little rooms an what he's about to have done to him :(

Not to mention we just noticed he has 4 new teeth coming in so that sure didn't help. He was late going in to the OR, it was about 12:30 or so by the time we walked him back there. We were given an estimated OR time of 78 minutes. We figured if we stayed in the waiting room it would take the whole time allotted so we went straight to the cafeteria to grab a quick bite to eat since I knew I probably wouldn't be eating for a while. We were gone maybe 15 minutes and my phone rings, it was the nurse saying Dr. Rutter is ready to talk with us. We packed up our food and rushed back upstairs. We sat down and finally the nurse said he's doing fine..that's what I needed to hear first and foremost..now I could relax-a little.

Dr. Rutter said his airway looks remarkable and the stent came out with no problems at all. He did tell is in the waiting room sometimes they are tricky to get out and sometimes it's a piece of cake. He also said depending how Hunters airway looks next Wednesday, he may offer for us to stay two nights in the hospital to start capping his trach! Basically that means literally placing a small cap over the end of the trach so it forces Hunter to breath through his nose and mouth. Usually they place a smaller diameter sized trach in as well so more air can go up through his airway past the trach through his vocal cords and out his nose/mouth. Very exciting! I wasn't expecting that at all....of course I am not holding my breath as it all depends on how Hunter's airway looks come Wednesday. I am praying it looks as good as it did when the stent was removed. Irritation and or swelling could cause the doctor to delay the capping trials..not too long maybe a few weeks but since we are already here it sure would be nice to start that this week. Once capping starts, Hunter would need to show he can be capped continuously with no issues in order for decannulation (removing of the trach completely). Not sure how long, may be a month could be 3, Dr. Rutter would let us know when that times comes.

Back to our day....after was talked to Dr. Rutter we went to the recovery room and found a very upset little boy. Nothing could console him. He was PISSED OFF! Seriously, I have never seen him so mad...it was a little scary. He had two IV's in and he wanted them both off (I would too), he wanted up, now he wanted down, he wanted to walk, now he wanted to sit, he was hungry, so we got him food, now he didn't want food, etc etc. He couldn't make up his mind, he couldn't even calm down to figure out what he wanted..it was a little hard to watch. Finally after around 45 mins or so he realized we had a popsicle and juice in front of him and he took them both and started to calm down.

We walked him upstairs to his room for the night (just for observation) where he quickly fell asleep on me for a couple of hours. It was some much needed rest for this little guy. We noticed right away he could eat better and drink better without the stent..which was so great to see. That stent really messed up his swallowing and eating habits. Once he was up again we ordered some food...a little bit of everything, mashed potatoes, grilled cheese, yogurt, chocolate milk, ice cream, you name it. He ate everything! I was a very happy mama.

I forgot to mention, we had asked Dr. Rutter to save the stent for us as we really wanted to see what it looked it..He said "you really want to see that gross thing" or sometime along those lines. We said, sure do! Ha ha. He said no problem, he can do that and they saved it in a nice little container for us to check out. After looking at it, no wonder it caused problems eating for Hunter, compared to his little size, it's pretty big! I will post a couple pictures of it..kinda interesting to see it.

We were discharged bright as early the next morning...really, I mean it...One of the doctors came by around 6:30 am saying we'll get you guys outta here real soon. I thought, okay in doctor language that means 4 hours..nope come 7am the nurse said no rush but I have your discharge papers ready to go. I was very surprised..and happy. We finally left I want to say around 9am as we let Hunter sleep a little more.

We went out for a big breakfast right away..he ate like a champ! We've kept busy here, doing some shopping and the aquarium again. We hope to catch the Zoo as well. Just two more days to find out if we go home Thursday or if we will be staying for another couple of days...getting a little anxious. Either way it goes though, I am feeling good about everything once again. Hunter is doing great. I can even cover his trach with my finger and he can breathe...before surgery I'd have to pull my finger away pretty quickly so he could catch a breath. We are hearing sounds again from him...not quite as loud as before and a little raspy but given the fact that his vocal cords where held open for a several weeks, it's pretty normal and he should sound better as time passes.

I have several pictures so far but I don't feel like adding a ton right now so more to come later but here are some so far....

one of the few moments he wasn't looking too mad...

sleepy boy after being in the OR

feeling a little better after some much needed rest...(you can see his scar on the left on his chest where they took out rib cartilage to use to widen his airway)