We were discharged Saturday afternoon from the hospital...what a relief! It's sooo nice to be home. Hunter swelling is still there but it's definitely not getting worse. Turns out there was so fluid or very little, after we did an ultrasound on it. So doctors decided to reason to go to the O.R. I really feel a big part of the swelling issue is that it sits right where his trach goes around his neck therefore has no where else to really go to. It also could be that is where some stitches are on the inside of his neck? The doctor said I should try and get the operative notes from Cincinnati as that would maybe help them determine what it may be. 

While in the hospital Hunter ate more than he has ate the whole time he's been home from Cincinnati I think! Of course it was only jello and Popsicles and lots of apple juice but hey I'll take it..he sure is trying! Also since we've been home he's even wanted some cheese and random stuff from my plate..he doesn't always keep it in and sometimes spits it out but that's more like Hunter before the stent was placed...

We have a follow up appoint with our local ENT here at UNM Children's. We have not seen this ENT before but I know he trained in Cincinnati and has preformed double staged LTP'S before so he may have a good idea what is causing the swelling also.  

I just got a call from the lady at Medicaid today and she said that Hunter's next trip to Cincinnati for followups have been approved and I got to pick our flights etc. She gave me a few options, I picked the shortest travel time possible. 5 hours travel time sure is better than 9, even though the shorter travel time is an earlier flight out, 7:05 am departure...that's going to be fun..lol. She also said unless it's booked full we will be staying at the Radisson again right across the river in Covington, KY. Were were quite happy there, free shuttle to and from airport and hospital. However, this trip we plan on also renting a car since we'll have a lot of free time. Jeremy is going to stay home this trip and my mom is coming with Hunter and I. Should be fun!

I do plan on keeping Hunter home most of the time until we leave again but we couldn't resist a quick trip to Toys R Us for Hunter...and get him a much needed POOL! Here's what Hunter has been up to since we got home...

This car is cool....

Or maybe this one is better...

Better yet, I'll take this one...

Oh my sweet boy..you keep us on our toes don't you?? Jeremy noticed that the incision on Hunters neck was looking swollen and irritated. So we called the doctors in Cincinnati and after looking at some pictures we emailed them, they wanted hunter to start on antibiotics right away. That was Tuesday night, and by today the irritation sure looked a bit better but the swollen part was still there. I talked to Cincinnati again and they recommended going in to see our local ENT just to evaluate him better.

After telling the scheduler at the hospital our situation she basically could have cared less and said the first available appointment is in September???? Um, really lady?? Did you not hear me say urgent, small child, concerned parent etc etc...so thanks for your empathy and help on that one..

Thankfully I was able to call our Trach Nurse, Jo Anne, who I don't know what I would do without. So thank you thank you thank u Jo Anne. She got us in right away to one of the ENT's here and Hunter was admitted to the hospital as a precaution.  As of now the game plan is to keep him on iv antibiotics and if it looks the same we'll keep up the antibiotics and stay another night in the hospital. If it looks worse at all they will open up the incision and see what it looks like. We thought it might be fluid in there but we did an ultrasound over the area and we didn't see any fluid. So we will just continue to monitor it closely.

I know I shouldn't beat myself up over this but I wish I would have noticed it sooner or did something quicker. I why didn't I think to stay in Cincinnati for a while after we were discharged from the hospital??? Grrr...

Please say a little prayer for Hunter that his incision gets better with the antibiotics and we don't have to go to the O.R. for anything..thanks for listening...time for bed...this mama is tired..

I had a very nice low key Mothers Day this year..We went out to breakfast with my mom and her friend, Larry. After breakfast, Jeremy watched Hunter while I got to have some much needed retail therapy. I spent a couple of hours at the mall and when I came home. Jeremy let me relax and watch my movies/tv shows and I got to do absolutely nothing! It was great...even when I was home, Jeremy still cared for Hunter 100% of the time..I also got a nice gift card for Starbucks from Hunter and Jeremy and a beauuuuutiful picture frame that Hunter decorated with help from Glamma, it has a picture of daddy and Hunter at the aquarium in Newport, Kentucky...thank you Hunty for that, it is sooo special...!

My picture frame Hunter made me....love!

Hunter in the hospital, when he was starting to feel better....

On another note, I meant to post this video sooner but I forgot..This is what a toddler does on an airplane....he was too cute...wouldn't sit in his seat for anything but he sure was entertaining himself... : )

This was on the way to Cincinnati so we still got to hear his sweet little voice...since the stent has been put in we can't really hear him at all...another reason why I can't wait to get that thing out!

Sorry for not updating sooner....Hunter continues to feel better everyday. We haven't even given him any Tylenol for 2 days now and we are getting many more smiles from him. He still has the feeding tube in...he can only drink and eat very small amount so I think we are stuck with it until we go back to Cincinnati next month. Oh well. That's a very small price to pay I think..

I am a little concerned because when he does drink liquids, even when we have thickened them. His stoma (hole where the trach goes in) gets wet around it. I think he is aspirating a little bit. Usually food/liquid comes out the trach itself. I'd hate to have to stop giving him his sippy cup completely until the stent is out...especially since he wants it often. But if it's causing aspiration, I might have to. I am just concerned if he doesn't keep trying to eat/drink orally, he won't want to once the stent comes out...It's not that far from now but still..I don't know..Frusterating. Sometimes I think the single stage operation would have been easier. At least then we are in the hospital the whole time and letting the doctors handle everything. I feel like I am always second guessing myself at home.

We are still trying to get his feeding schedule down..everyday it's a little different. We wanted to not have him feeding on the machine overnight so we tried to double up during the day with feeds but that seemed to be too much so we are back to overnight feeds. So confusing!

I go back to work this Friday..It will be nice to get back in the swing of things..but also part of me just wants to be with Hunter until we go back to Cincinnati..Right now I only work 3 days a week so I've pretty much got it made. I am so thankful for a schedule like I have right now. My work has been good about getting me the approved time off for Hunter's surgery etc and follow up appointments.

Hunter carrying hisfeeding tube equipment in his little backpack...isn't he adorable...

Flying home today..we were discharged yesterday morning. We got back to the hotel and relaxed a bit. We ate dinner at an Irish pub that was located inside the hotel. Hunter ate a few good slurps from his baby food pouch, he loves those and normally finished one in about ten seconds, not joking!

We set up his feeding tube an set it for his over night continuous feeds. We are going to try and stop the overnight feeds once we get home. We think it's making him uncomfortable at night. He tosses as turns non stop. Not to mention he only wants to sleep on Jeremy and I..not even next to us, ON TOP of us! Not exact the most comfortable thing all night for us. Also he gets so hot with sleeping with us. Last few nights he's been drenched in sweat. I'm hoping we can get back ino a good sleeping routine once we are home. However, after coming back from Cincinnati last time it took about 2 weeks to get back to normal. By the e he's back to a routine we'll be leaving again for Cincinnati for the stent removal.

Flying on the plane as I type this..anxious to get back home today.
I hate flying and it seems the more I do it the more I hate it. Seriously tempted to drive next time, however after looking into it. The drive is just too long for an active toddler to have to sit in a car seat for that long. Hmm maybe train ride? Wish I wasn't such a nervous flyer!!

Hunter is sleeping on me and I have to go to the bathroom sooo bad..weighing my options, stay put and bladder suffer but sleeping toddler will continue sleeping(very good thing) or attempt to pass Hunter off to Jeremy for the good of my bladder and risk the inevitable ??? Every parent know this predicament..lol.

Okay enough about my bladder..I'll update more later... : )

Hunter the Brave

Hunter continues to do well. His incisions are healing very nicely the doctors have said everyday. The doctors do their rounds everyday at 6:30am...yes AM...Although I'm usually half asleep when the come by but between both Jeremy and I we manage to remember what they've said each morning.

Today they did Hunters first trach change post surgery. It went well, no issues. We don't even need to put gauze on his incisions, just some ointment they have given us.

I wish I could say his eating has improved..he still isn't too fond of food or drinks at this point. He did take a few sips from his sippy cup though. Better than nothing so I'll take it, but far from him being able to take out the feeding tube. We were shown how to use the feeding pump since its been decided we'll have to go home with it.

I have to admit I was quite sad and overwhelmed about this. Jeremy assured me that if we can get through learning all about caring for Hunters trach, than we can certainly figure out this feeding tube stuff. I really thought he would start eating better by now and not need it. The doctors assured us it's very normal for kids to go home with feeding tubes after this surgery. Thankfully it's only temporary. I'm hoping that even just getting Hunter home and in his normal environment that will help him start eating orally again.

Hunter was up and doing his rounds on the complex airway floor earlier today..and today he was digging the wagon much more than yesterday(he was not into it at all!)

Hunter in action...