Wow....I still can't believe how good this trip has gone for Hunter. We came here thinking we were just getting the stent out of Hunter's airway and we left the hospital with Hunter breathing out of his nose and mouth! I am beyond thrilled.

Wednesday morning came and Hunter still had a bit of a clear runny nose, I was a little worried that his appointment would be cancelled. I know they are very cautious with little ones and anesthesia. All I could do was wait all day until we went to the hospital for his appointment to see if that would affect us moving forward with looking at Hunter's airway. Our appointment wasn't until 4pm, we had to be at the hospital at 2pm so it was a long day for us! Mainly because Hunter wasn't allowed to eat anything past 8am. I sure wish we could have had an earlier appointment but doesn't always work out like that.

Hunter kept signing the word for "hungry" and it was just killing me and I hate lying to him saying "we're gonna eat really soon buddy, just a little bit longer okay". He kept trying to look through my purse because he knows I always have his treats in there :(

Finally 2pm came and we arrived at the hospital. Just as I suspected as soon as we walked into the doors that lead to the little pre op rooms Hunter got very upset and wasn't having any of the pre op vitals that had to do, weight, blood pressure check, oxygen level check you name it. The nurse brought in some toy airplanes and trucks. Which Hunter was into for a little while, but that didn't last very long. He was once again very mad! We waited for an hour and 45 mins before they took us back to the OR. Hey I was actually happy, it was a whole 15 mins early...it's usually 30 mins behind schedule at least.

pretty much how he looked the entire time in the pre op room... : (

I got to sit with him again as he was hooked up to anesthesia again, he insisted on holding his trucks while he drifted off to sleep...anything for you my sweet little boy ; ) Surprisingly I do pretty well with this part, I'd always imagined it would be the worst thing ever to see your baby go under anesthesia, and it's not fun but the doctors are always so nice and reassure me they will take good care of Hunter and let me kiss him and see him wheeled off, so I feel a little better knowing he's in good hands.

We waiting about 25 mins before we were called into the consult room to speak with Dr. Rutter. He said Hunter's airway didn't look perfect, but it looked pretty close to it. There was a little bit of granulation tissue above the trach, which is normal and the trach itself causes it since it's a foreign object in the body. So he said to continue Hunter on a liquid steroid that we put down the trach tube which usually takes care of it. He said he'd like to go ahead and have Hunter try capping his trach and see how he does.....YAY!!! So once again, capping is the process where a little cap goes over the trach tube so Hunter does not breathe through the trach but only his mouth and nose. He did say some kids just don't tolerate the cap for one reason or another and some do fine with it. If he didn't do well with capping, it's not terrible, we just would need to try a couple of other things etc etc...Anyways, we got  back to the recovery area and once again, our little fire cracker put up a bit of a fight. He wasn't happy, however, this time we were able to calm him down after a few minutes with only 3 popsicles and 2 juice boxes...lol.

We then got upstairs to our room which we had to stay 2 nights with Hunter capping the whole time day/night and keeping up good heart rates, oxygen etc.  We let him eat first and get comfortable before we actually put the cap on him. So when it was time we just kept him busy with his trucks and books and the nurse quietly removed Hunter's HME, which is what covers his trach currently and helps humidify his airway....and then he put on the cap. Hunter barely even flinched. I was certain he'd try to pull it off right away but he just kept playing like nothing happened. And just like that, Hunter was breathing completely through his mouth and nose as if he's done so all along.  It was such an awesome thing to see. He immediately started making sounds again! The last several weeks with the stent in his airway he wasn't able to make any noise at all! So this was so fun to hear him again. He loves trucks so he started yelling out "huts" "huts"...that's his work for trucks...so cute to hear him say that over and over again. Now everything seems to be a "hut". He's been babbling away almost non stop and we are loving it!

Later that night, he slept like a champ. No issues, and woke up happy and hungry. We ordered him food and he gobbled it down. Later in the day we went to the cafeteria and had lunch, we checked out the play room. He was having a ball in there. We walked outside and saw the Chipmunks, Alvin, Simon and Theodore! They were a pleasant surprise to see. Hunter wasn't too in to them but I sure thought they were neat to see.  Later we watched Bambi and it had Hunter laughing up a storm, we couldn't stop laughing just watching him laugh..and it was funny because the parts he was laughing at weren't even funny parts...silly boy.

Also, I noticed I have a million pictures of Hunter chowing down....well it's just been so fun to see hi eat food again because after his big surgery, he wasn't able to eat very well with the stent in his airway so he was on a feeding tube. Which was NOT fun...he would pull it out almost daily and then we would have to put it back down his nose, he was not fun for him and AWFUL for us as we had to hold him down as he would fight and fight. I hated it! So now that he can eat again with no issues it's been great to see!

Another easy night and we were finally discharged around 10am. We went out to a really cute place for brunch...Scrambler Marie's the the place...very yummy! We settled back into the hotel and we are now in the process of packing and organizing for our trip back home tomorrow. It's going to be a long day and I can't wait to sleep in my own bed again! 


The plan for Hunter is now to continue capping at home and go back to Cincinnati Children's in early August and attempt decannulation (removing of the trach completely). Hoping Hunter continues to do awesome with capping so in a few short weeks he'll be trach free!! If he's not ready for decannulation at that time, we'll just try capping for a few more weeks. It's a differnt feeling for Hunter now to breath through his nose and mouth, so we have to remind him to cough up the "gunk" in his airway (normally I would just be able to suction it out of the trach). He does a really good job of coughing though, so I am hoping this shouldn't be an issue. Typical kids/adults have secretions/saliva in their mouth all day and we automatically cough it up or clear our throat and swallow it. Hunter hasn't had to do that so that's an important part of being able to get the trach out is him showing he can do this. He has really been doing great though with it so far.




More pictures from our trip...again these are in all wrong order but like before I'm too lazy to do that right now. Once I'm home I'll probably rearrange them since it's going to bug me but for now, enjoy.

so cute watching him "babysit" this little doll, but he dropped her like a bad habit when he found some trucks..lol

he loved riding this around the complex airway unit

brunch time!

ready to  eat!

We went to Mcdonald's for a late meal tonight...hey it's right next to our hotel so why not...Hunter was so funny, he can eat and dance at the same time...he was cracking me up.

update part 2

Not really much to update today...I just wanted to share some of the pictures of our trip so far. Today has been a very low key day with napping, snacking and packing...It's hard to pack completely though since we are not sure if we are leaving Thursday or Saturday. Hunter woke up with a bit of a running nose, mostly clear but he was definitely a bit gunky for a while. I figured, really???? Now?? He's been fine though other than that and now he seems to be fine. His oxygen level has been good today, not at 99% like it has been but it was around 96-97% which is still very good. Still bugs me though as it seems we can't keep this kid healthy for more than a week or two at a time! Praying he stays well enough to have the doctor look at his airway again tomorrow...

Here are some pictures over the last week.....they are in no particular order....way to lazy to do that right now ; )

someone likes ketchup

being silly in the lobby

taking a walk in the lobby

checking out the fish at the mall

kissing the penguins at the aquarium

checking out the fire truck museum

watch out hollywood...here comes Hunter!

he sure knows how to get comfy on the plane..

waiting for the plane

I also wanted to say a huge THANK YOU to the wonderful mama's in my Mommy Group that so generously put together an AWESOME care package for us. It was beyond generous and sweet. You guys thought of everything! Hunter has loved playing with his new toys and books. I have thoroughly enjoyed being able to get some much needed Starbucks! I seriously can't thank you guys enough. I can't wait to start seeing you all again at our meet ups...Once we get back Hunter and I plan on going more regularly again. 

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)

stent that was holding up the new airway in place while it was healing...it's approx 1.5 inches long and slightly bendable rubbery feeling

what shall I eat first??

some much needed ice cream!

breakfast!

image 4 shows Hunter's new wide open airway!

Evening walk and a new 'do......