G-tube Placement at Seattle Children’s Hospital
Oh how I wish I would have had this g-tube resource guide back in 2012.
G-Tube Placement Pre-Op Appointment
Apollo had his pre-op appointment Thursday, May 3 2012. My groovy parents drove Apollo and me down to Seattle so Chuck could drive our vehicle down after work. Meanwhile, Chuck’s nifty parents were watching our hoard of adorable children. Oh, a few were at friends’ houses because that’s what happens when you have a milllion kids.
My parents were finally able to see Apollo’s home away from home. The hospital where he spends so many of his days. Pre-op went smoothly and my parents drove us to the hotel where Chuck, Apollo, and I were spending the night.
As soon as they left Apollo and I settled down to watch Shrek and wait for Chuck to arrive. Chuck called a few minutes after six to tell me he was just walking out the door…”Um, what door?” I asked.
Never mind that he has been getting of work at 3:30 or 4:00 lately. This day everything that could go wrong at work did. And more. So I now I had two plus more hours in tiny a hotel room alone with a crazy toddler. Then I realized he only had an hour left before I had to cut off from solid food (because of surgery the next morning).
I had less than an hour to walk to a nearby restaurant from my hotel in Seattle and feed Apollo. I knew I couldn’t lose sight of my hotel or I may never make it back, so walked to a nearby mexican restaurant…Apollo loves rice and I figured that and the beans would fill him up. Only he wouldn’t eat a single. bite. Not to be discouraged, I hurried back to the hotel where I figured I would buy him anything in the coffee shop that he would eat. Only the coffee shop closed at six.
So we headed up to the hotel room where he refused to eat: a granola bar, a Clif Bar and baby food. Basically all the food I had packed. I did manage to get him to eat 4 animal crackers. And that was the last meal he ate for over 36 hours.
Chuck finally arrived just past eight and we spent a horrendously horrible night in a lovely hotel. Apollo couldn’t eat or nurse or sleep. We were tired. And miserable. And we got in a fight. And then we made up. We told Apollo he was getting a tube put in his stomach (we had been looking at pictures and talking about “little boys who eat through their tummies” all week). And he was very upset. And scared. And we had no way to console him.
Coffee, surgery beeper and parent passes. The symbols of our new life.
G-tube Surgery Day
Finally, finally it was time to head to the hospital. After two surgeries and two procedures that required anesthesia in the last five months, he knows the drill. And doesn’t like it.
It wasn’t until we were talking to the surgeon that we were told Apollo wouldn’t be able to eat or nurse until the next morning. And we had consoled him by telling him he could eat and nurse after he woke up from surgery…
Finally they took him back. Half an hour later the surgeon told us all was well. The procedure went off without a hitch (there was some concern about whether or not he would be able to pass the tube through his compressed esophagus). And we now have glossy photos of the inside of his esophagus! We were then called to go wait in his room.
While we were there and the nurse was typing his info into the computer, her phone rang.
“I’m right here with his parents…let me ask.”
Then she turned to us and asked, “Does Apollo usually make a squeaky noise when he exhales?”
Terrifying words to parents of a child with chronic respiratory issues. We assured her that he never makes noise when he exhales (only on inspiration).
“Don’t worry,” she said. “They’re just going to call the anesthesiologist back in to look at him”.
Worry we did. Especially remembering the “difficult airway” sign they posted on his crib during our last visit.
After an excruciating hour of worry, he was brought in to us. Asleep and making horrendous noises as he breathed. Standard protocol for Apollo post surgery.
G-Tube Placement Recovery: Overnight in the Hospital
And he spiked a fever again. Just like he did last time he had anesthesia. His little system, it seems, can only handle so much. This time there was no shaking or vomiting, but his fever was several degrees higher. It was a mixed blessing. Because of his fever, he never really fully woke up until late evening, so he wasn’t asking for food.
Apollo was in pain and miserable. I wondered if we made the right choice. It seems so weird: a feeding tube for a kid who can eat. And it was so big. And so long-term. And the evening and night dragged on and on and on and on. And it was terrible.
And then morning came. Apollo’s fever went away. They put pedialyte in his tube. He was able to nurse and eat Cheerios. He was in pain, but morphine helped.
This is the only picture I have of his tube so far…
After he tolerated several small tube feedings and we were properly “trained” we got to head home.
Oh my. I dont know what to say, nothing seems adequate anymore. Your whole family has gone through, still going through and will keep going through so much. That looks bigger than I thought it would, the tube. I hope he doesnt have to be under sedation any more. I guess he will, for a smaller port later right? There is nothing I can do but pray. I dont think that a blog can adequately express the stress that you all feel but I am sure that it is heavy. Just keep praying, give God your stress and he will help you through them. I know you know that, I just dont have any other words of encouragement.
Wow, he really must be the cutest toddler out there. And he is such a brave one. It is amazing (and sad) what children can go through. Have to go through. Such a little trooper!
Brave boy, brave parents! Oh, how we are cheering you on and praying for you…all things are possible with God! You are doing a great job, momma, and an inspiration! Hang in there….I just know brighter days are ahead! Hugs from VA!
He is so precious! Praying for the whole family. You are such amazing parents. I’m sure you feel like you are being pulled in a million directions right now. Praying for strength, grace and peace.
I have been reading your blog for years now daily. I havent commented in a while but reading today’s post made me want to write and say how brave and strong you and your family are. Being courageous even in the face of adversity is admirable! Please know we are thinking of you in NZ and hope Apollo is able to grow with his feeding tube in place and that you will have the rest you must be needing desperately. xo
Praying this was the right decision for him. Did they say how long he would have it? I feel bad for him. He doesn’t look that small from the pics. He is petite but not tiny. I wonder if he were fed toddler friendly food, not Mexican spicy that may burn or hurt his esophagus or hard granola. Give the toddler eggs, biscuit, fries, anything he will eat and worry about healthy foods later. Didn’t the docs say if he grew it would fix all of his issues from the start? Hopefully he will grow quickly now that he will be getting proper nutrients.
Jill…the idea of feeding him different food has come up on here several times…and I’m not sure why. We feed him ANYTHING he will eat as long as it is dairy free (doctor’s orders). He eats scrambled eggs, french fries, chicken nuggets and sausage (chopped up teeny tiny), nut butters, ice cream and yogurt made with coconut milk, Oreo cookies, protein bars, dark chocolate, etc. He has been on a high fat diet since last August and is barely growing. Two things are happening: he has an artery from his heart that compresses his esophagus- food literally backs up there, so he has to work very, very hard to eat. He also burns too many calories trying to breathe and eat at the same time because of his airway. Neither us, nor the doctors would have decided on a feeding tube if he didn’t have a physical reason causing his eating issues. The reason I mentioned questioning my decision in this post is, it is so hard to see him in pain…it is ripping my heart out 🙁
Oh Renee, I am so sorry! That whole story sounds horrible! I am sure the tube will help in the long run, and hope he won’t feel hungry anymore, but still sad to have to go through that! He is a trooper.. But so are you and Chuck!!
So glad to hear that Apollo’s procedure went well. I work as a NICU nurse and have taken care of lots of babies with G-tubes. As much as you hate to see a kid have one more surgery, the tube is almost always helpful! I’ve seen kids thrive after getting their tubes placed. I was wondering if Apollo’s doctor mentioned switching his tube to a Mic-Key button, eventually. They are so nice and small. Great for an active toddler! Best of luck! I know he will do great!!!
Its hard to see your baby NOT growing. Mine didnt have any real problems, he had a lot of pain in his ears that we didnt know about but he didnt eat. He weighed 17 lbs at age 1 and weighed the same at 18 mo. If I complained to anyone people would say, oh he isnt that small. A lot babies are petite. They thought I over reacted. I was very grateful when the doctor ordered pediasure. Everyone told us, give him whatever he will eat. They assumed bc we were health nuts we only offered him wheat bulgar or something… We let him eat cookies! We did not care, he lived on milk mostly. Whole fat, real cows milk from healthy German cows. And a certain brand of spicy hot ramen which surprised me. We took a lot of flack from people, and it really was hard as young parents but we did the best we could and the pediasure helped him grow and gain weight. He didnt have feeding issues like Apollo has at all, or the health problems. His were minor obviously, but it was hard to watch him struggle. I cannot imagine how much more your struggle has been, how much harder.
Jo- Yes, I get “he’s not that small” a lot. And I keep saying, it’s NOT about his size, it’s about growth. And his only hope of breathing and eating without assistance is to GROW…hopefully this will be our answer.
It really makes you vulnerable when people know your life choices (diet etc.) especially if you blog, which is why I choose not to. I know it may have/will benefit other families in a similar situation information wise but it really does leave you naked and out there to be judged. Maybe the ‘spicy” food comment was made in refernece to your last post about his last meal pre surgery? (which he DIDNT consumme.)
Really no one should judge till they have walked a mile in your shoes or have witnessed first hand.You both seem to have really hashed out all alternatives and gone with what you feel is best for Apollo and that is all you can do as a parents. Keep being strong and be kind to each other. Always in our prayers your friends from down under. xo
Bernadette, yes, I find it so interesting how often the “don’t feed him only healthy foods” has come up…because we honestly feed him anything he’ll eat. And beans and rice are two of his favorite foods…everything I offered him that night was on the list of “food’s Apollo eats” but alas, he doesn’t eat much. Anyway, we all survived! And yes, I do blog the details to help other families. I have searched in vain, many times, for a blog about a family living with a double aortic arch.
Well done you guys! Such a hard thing, such hard times…but lovely to see the happy photos in the post below. Great that Apollo will be getting the nutrition he needs…so hard to put him through surgery again….and to be thinking about more to come….but I think this has to be the first step – help him to grow…then see what next. But what do I know? Next to nothing…but you do – you are HIS parents – I read this quote once, and love it (think it may have been Ann Voskamp) “God chose you to be Apollo’s parents and he sure doesn’t make mistakes”.
Praying for you all – for Apollo to grow! to be “happy” with his tube and pain free, and the right next step. For all the children, and for you and Chuck.
I know this is quite a few days past the post date, but I reallly wanted to reply. We had a son on a feeding tube for a couple of years. He was failure to thrive, and it was supposed to be the answer (for him it was and wasn’t at the same time, but a LONG story). Anyways his GI doc assured me that kids handle this surgery so well, they are back to themselves the next day…..can we say, “big fat lie!”. If I had read this sooner I would have tried to prepare you for the pain the he was going to be in. Not to scare you, but so you could have been prepared emotionally and mentally. Our little guy wasn’t back to himself for a full two weeks!!! I made sure his GI doc knew about it too 🙂 The tube becomes just a way of life, but it certainly isn’t easy. I was so happy when he finally learned to eat on his own (he had a lot of sensory issues and couldn’t handle food in his mouth, he would throw up if it touched his mouth!). He is still small, smaller than his younger brother that is 2 years younger than he is. But he eats pretty much anything now 🙂 I am praying that this tube will help Apollo grow.