Up down and all around...

I've been feeling pretty emotional lately...mostly about Hunter, as usual. I feel like when is it all going to end? The worrying, the what's going to happen next etc etc. Sunday we noticed pinkish/brown secretions from his trach, which means blood..now that's not terrible as it's for the most party only a concern if it's bright red blood.  The night before he didn't sleep well and was pretty upset jumping up and down in his crib, gagging himself so we feel that's what maybe caused some irritation around his trach and thus leads to blood being coughed out. Still it's not a fun thing to see...he's only had that happen maybe once before in all the time that he has had his trach. Monday came and less of the brownish/pink secretions which is good but they were still there.

It was not fun at all come bed time....he had been fighting it the past few nights. He wants us to hold him and then when he is passed out and I feel it's safe to put him in his crib he wakes up and freaks out. Not to mention the coughing he was doing...it sounded more like a cough that he was trying to get stuff out of his trach not so much a "sick" cough...however he oxygen levels were going into the low 90's and even the 80's at times.  Finally I got him a puff of Albuteral, which seemed to help and I turned on his oxygen. His levels were back up to the mid 90's from that.

So today he slept in until around 9:30! Thank you, Hunter! He started out in a really good mood, all smiles etc etc. Once we went out to lunch to meet my mom, he was pretty moody. So he's back to being pretty clingy to me. I love him to death but that can be pretty overwhelming since I wanted to get some stuff done today and my mom was here to help with Hunter and he pretty much only wanted me. I know it was a combo of not getting great sleep and probably just overall sick of tube feedings etc etc. He's been through a lot in the past month. I'd probably be pissed off too a lot of the time! Oh and last night he also pulled out his feeding tube AGAIN...I hate it when that happens...simply because I know we have to put it back in and he hates it and it pains me to see him struggle as we insert the tube down his little nose..I pray once his stent comes out next week that's the end of the feeding tube..

We leave next Tuesday morning for Cincinnati...I am now again scared he's coming down with a cold that will cause something to be delayed...Can we please get through a month with no sickness or issues???? I have been keeping Hunter at home most of the time in between our trips to Cincinnati. Which I also feed terrible about...Hunter loves the outside and has so much fun. I know I can't keep him couped up forever and he won't be but it sucks for the time being. After this trip I'll be more laxed on keeping him inside all the time. After all it's summer practically and most colds and flu's are over with.

I really feel as though I am being tested, what next will happen?? And how much more can I handle. I don't feel strong at all. I just want my little boy to be done with all this crap. Don't get me wrong I'd love him all the more even if he had to deal with it the rest of his life but no parent wants their child to have medical issues, no matter how large or small they are. I feel bad because sometimes I am short tempered with Jeremy and even Hunter sometimes... I don't mean to be, but I feel so overwhelmed lately with how this healing process has gone with the surgery. I read that the 2 stage procedure is "so easy" and "no problem"....I beg to differ...I'd almost rather the single stage surgery have been done, that way we'd be in the hospital surrounded by doctors 24/7 who can make the decisions instead of me and Jeremy having to second guess ourselves constantly with, is it healing right? Does it look normal? Am I missing something or are we doing everything just right with the after care part...I am by no means saying that it would have been easier. I'd hate to have seen Hunter under sedation for so long etc. But by being sent home with a stent in Hunter's airway, causing issues with his eating and having swelling issues that required a hospital stay etc etc. I don't think it's a walk in the park as some parents have said. Please keep Hunter in your prayers....

family fun

Memorial day was very relaxed, no big plans for us. We had a nice bike ride around the neighborhood with Hunter in the trailer..he LOVES that thing..got to get him in it more!

All tuckered out after his biking trip...

Later in the day, after a nice bath and trach change we headed out to look for birds and lizards during our little family walk..We were passed by a couple of kids maybe 12ish who were jogging and once Hunter saw them, he immediately started jogging (a little slower speed of course) just like the 'big boys'. It was the funniest thing...he is very much into imitating people right now...

There is a poem I found from another Mom on the Tracheostomy forums I read...This is a well known poem in the world of people who have or have had kids that have some sort of a disability or special needs.

While Hunter has needs that require medical equipment, extra knowledge for me to learn, extra care, talking to people who I never imagined I'd need to talk to, learning more about medical insurance than I ever wanted to...but at the same time, Hunter is perfectly normal and otherwise healthy and can do 99% of the things a child without a trach can do and hopefully soon he will be without a trach even. For me though, I feel as though I live in between these two worlds...one foot in each world. So close to the world I imagined...the world where I don't  have to remember a suction machine, or did I bring enough catheters, or did you bring the emergency bag?? I am thankful my "Holland" is only temporary...hopefully...and to the Mothers who's "Holland" is permanent....you are Hero's in my book. Motherhood is the hardest job in the world, add on top of that medical issues for your child...there's no bigger or more important job out there.

Welcome to Holland

By

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vaction trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michaelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very Exciting.

After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life i have dreamed of goin to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing in that they have not taken you to a horrible, disgustin, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's a slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where i was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

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...

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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