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...

I meant to to update yesterday but obviously that didn't happen...anyways...Hunter is still doing good. He was even up out of bed playing with trucks and putting stickers all over mom and dad.

Poor guy pulled out both his iv's so of course they had to put one back in. Super fun...oh and he pulled his feeding tube out yesterday. You guessed it, they had to put that back in as well. Both iv's and feeding tube were originally placed while he was under anesthesia so this time he had to deal with getting those back in wide awake...he did really well but he was not happy about it one bit. I feel so bad I keep telling him it's almost over, no more bad stuff, and then I feel like a big liar when he ends up needing something else that's going to hurt!

Yesterday he took a few bites of applesauce, yogurt and had some chocolate milk. He is still mainly being fed through the feeding tube though(which goes through his nose). We are working closely with a speech therapist with eating and swallowing etc. Because hunters stent in his new airway goes through his vocal cords which are normally closed while you eat, eating and swallowing feels different for him now. Also the vocal cords help keep food out of your airway, so we want to make sure he is eating slowly and safely. There is another upper part of your mouth( can't think of what's it's called right now) that is the main part that closes off the airway and allows food to go down to the stomach but the vocal cords are kind of a second protection point from keeping food out of the airway. Hunter wont have that until the stent is removed. At that point his vocal cords can move normally. Before we can leave the hospital they want to make sure Hunter can safely eat. Otherwise he would go home with his feeding tube..I hope we don't have to do that. The good thing is you can tell he wants to eat and drink, it's just hard for him right now, but he is definitely trying.

The doctors also changed his ties around his neck today and cleaned up his incisions. They look really good they said and are healing up nicely.

We do have a date for the stent removal...June 4th! So not too terribly far away! Very happy about that. Right now I'm just very nervous how we are going to get through the next few weeks with eating..grrrr I hate not knowing.

I will update again tomorrow...


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This is a link to the surgery that explains what Hunter got...

http://www.cincinnatichildrens.org/health/d/laryngotracheal-reconstruction/


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Update

Yesterday was a big day and overall successful, however didn't pan out as we expected. I have now learned to expect the unexpected...nothing seems seems exactly how I've envisioned it. Not that it's a bad thing but when I have something pictured in my mind and then it changes, it's a little frustrating.

We arrived at the hospital yesterday around 11:30, we were in our pre op waiting room just before noon. Hunter played with some toys, bubbles and watched some cartoons all while the nurses, doctors, etc came in several times to go over Hunters medical history etc etc.

Dr. Rutter the ENT, wasn't too concerned about hunters rash, we think it's probably his mild eczema Anyways. The only concern was that Hunter just got over a cold in the last week and he was a bit concerned the single stage procedure (where they take the trach out at the same time) would be a bit too much on him, recovery wise. Single stage they would keep hunter sedated for approx a week with a ventilator breathing for him, and then slowly wean him off the meds and get him breathing on his own. From what I know from other parents who've been down that road is it's not fun at all and a very hard recovery. I did wonder why then he didn't ask if we wanted to reschedule for a later date if that was his only concern. Of course I forgot to ask before they had already started surgery with the double stage route.

Double stage is essentially the same surgery but the trach stays in while his new airways heals. A stent in holding the graft in place supporting his new airway while it heals. Then weeks down the road the stent gets taken out, followed by the trach being removed in 4-6 weeks. There are pros and cons to both ways of doing this.

I'm disappointed because I envisioned coming home trach free, but it's not the way it was supposed to happen and although I'm a bit bummed...the most important thing here (as Jeremy said to me) "we still have a very happy, otherwise healthy boy who doesn't care that he has a trach or not at this point". I thought how perfectly said that was. So whether the trach came out now or comes out in a couple months, it ultimately doesn't matter.

With the double stage procedure, he didn't have to go to ICU, he went right up to the Complex Airway Floor where he's been doing well. He's definitely in pain and we've been giving him morphine and Tylenol and those seem to help. Today he's been pretty sleepy, then wakes up irritated (understandably) then we get him situated again and he drifts off to sleep again.

Later today or possibly tomorrow we will attempt having him eat thickened liquids and see how he tolerates it. Some kids do fine other kids just don't tolerate the stent in at all and have a really hard time swallowing and get sent home with a feeding tube through there nose until it's time to come back and get the stent taken out. Hoping he tolerates feeding.

I will update more later..thanks again for all your thoughts and prayers..



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8:00pm

We arrived a few hours ago and got settled in nicely at our hotel. The plane rides were smooth and uneventful (thankfully)..I am not a good flyer...I usually panic the whole time. You'd think with as much flying as I have done it would be a piece of cake--I wish..

It was nice and warm out when we arrived and the last few hours we've been watching the the weather outside get worse and worse. Tornado watch, flood warning, you name it. Soon after though, the dark clouds rolled away and we have a nice view of the city again from our hotel room.

View from our hotel room

Trying to tame Hunter in the hotel room is quite the challenge..toddlers and hotel rooms just don't mix. I've already got a bed full of crackers and I found the water glasses from the bar under the bed already...wonderful.

As anxious as I am for tomorrow, I'm trying to stay calm and just let Hunter enjoy his play time for now...and hopefully he'll tire himself our soon..

Oh and as if I need another thing to worry about, Hunter now has a bit of a rash on his belly...really?? Trying hard not to convince myself surgery won't be cancelled because of it tomorrow..praying it will have no affect on surgery..


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