raising hunter

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.