The news from Cincinnati has left us more confused than anything else. In what should be good news, the hole in Isaac’s esophagus has closed, and we are happy to hear that, but more frustrated then we’ve been in a long time.
The frustration comes from the fact that we are once again left waiting. The team in Cincinnati made some discoveries that concern us. They determined that Isaac has little to no motility (movement) in his esophagus, and that his stomach sits high up in his chest cavity – contributing to his horrible reflux. This reflux is being blamed for the issues he has had, as he is aspirating frequently.
The decision to watch and see what happens is frustrating because we know that Isaac will more than likely get another hole in his esophagus, they happen pretty much like clockwork. We also know that our son is living with pretty horrendous reflux, which can’t be comfortable.
While the surgery to replace the esophagus with colon is major, and risky it may be the best chance Isaac has to be comfortable. Logically, we understand the decision to avoid any surgery we can. But our hearts hurt for this kid who wants to eat and is being told he shouldn’t, this kid who gets sick a lot more than he should because his esophagus consistently tears, this kid who deserves a chance to be as normal as possible.
Isaac is just a kid, and he’s been through so much. We are at a loss as to how to proceed.
We like to know what is coming next, we like to plan and we like to be able to prepare Isaac. Right now we don’t have any of that.
For now, we wait and see what Isaac has in store for us next……..
Isaac has a lot of questions and observations lately. We happened to watch a show the other night that focused on a newborn baby. Isaac was fascinated, and wouldn’t let me turn the channel.
This show led to an almost hour long conversation about babies, and Isaac when he was a baby. He couldn’t believe babies are born with eyes and ears and noses and mouths. He asked if he had been, and also checked to see if his trach was there when he was born. I explained to him that he didn’t have a trach at birth, and he was shocked.
It occured to me that he has only known a trach. He has seen pictures pre-trach, but never asked us about it. I told him how loud he used to cry, and how hard it was for him to have to wear a CPAP mask and oxygen before his trach. We took some time to look at pictures and talk about how his trach has helped him through the years.
Just a few days later his nurse mentioned another baby she works with (who has a trach), the light bulb went off – and a whole new set of questions were raised. It was very exciting for him to hear that there is a baby out there with a trach like him 🙂
I told him his trachiversary is approaching (3/12) and asked if he thought we should celebrate it…… of course he thinks so – who doesn’t want to celebrate?? So, we’ll have a trach celebration here at home, because really – trachs are to be celebrated 🙂
Sometimes we forget just how remarkable Isaac is. He comes home from school every day with a remarkable smile on his face, in spite of the fact that he is probably walking around with a hole in his esophagus. He has to drag around a backpack with a feeding pump in it, that is attached to him the majority of his day, and he does it without complaint.
This week we had some concerns about his feeding tube leaking, and decided to change it. This is no easy feat, it has to be passed into a hole in his stomach, through his stomach and down to his intestines – this is done while he is awake and a gigantic xray machine is above him.
Our brave boy was pretty nervous before the tube change, but once we walked into the hospital he calmed down and hopped up on the table in radiology with his DSI in hand 🙂 Isaac tried so hard to be brave as they threaded a wire into his tube and pulled the old one out, but he cried all the way through it… Once the old tube was out the new had to go in, more tears ensued. He kept asking if he was done yet, and we talked as much as we could about the incredible treat he would get when he was done.
As soon as the radiologist told him he was done, the game came back out and he happily thanked the Radiologist “very much” for changing his tube….. what an awesome kid 🙂
At the end of the day I look at him and I am amazed by his remarkable.
In a seperate case of remarkable – the entire scheduling of this tube change was orchestrated by a nurse and doctor who weren’t even in the office – they did it all long distance…… that is love!
One of the hardest things about raising Isaac is making decisions for him, because they impact him so deeply. After we had to start him on a second round of antibiotics a few weeks ago we started thinking this hole needs to be addressed, aggressively.
We emailed Dr. Hess in Minnesota and laid out the plans from Cincinnati for his opinion, he sent a very thorough response. He essentially said that anything less then just replacing the esophagus with colon would a patch, and we will deal with this repeatedly. He also again suggested possibly removing a portion of Isaac’s right lung.
I emailed Dr. V in Cincinnati, and he also sent a nice thorough reply today. He agrees that scarring Isaac’s esophagus will not be the best fix, and he has successfully placed colon in place of esophagus in a lot of kids – and wants to discuss this option after scoping Isaac one more time to make sure they haven’t missed anything.
So, we have a multi-million dollar esophagus that we have put 5 years into saving. We have watched our little boy get very sick in the process, several times. We have watched him fight and turn it around every time. It seems it just time to let it go. It is time to give him his best chance at being healthy – forever.
He wants to eat, he wants to drink, he wants to play and run and talk – but when he has a hole in his esophagus and that hole impacts his lung function he can’t do those things the way he would like.
When/if we go this route we are looking at a major surgery, one that will be very hard for this 5 year old who totally gets it now. It will stink, but we will do whatever it takes to give Isaac every chance he deserves.
It seems there is an awareness month, week or day for everything these days, doesn’t it? February 9th-15th is Feeding Tube Awareness Week, feeding tubes are pretty important to a kid like Isaac 🙂
Isaac’s first feeding tube was placed when he was 3 days old, he’s had one ever since. He’s alternated between two types – a GJ and a G, both providing essential nutrition and medication to our amazing boy. When life is good he has a G tube – food goes directly into his stomach with this tube. At not so great times he gets it through the “J” portion of a GJ tube – this puts the nutrition straight into his Jejunum, the beginning of his intestines.
Of course, we wish he didn’t need it. We dreamed that he would start eating and have it out early in life. As each complication shows us, it’s not that easy.
The GJ feeding tube currently means that Isaac is connected to a feeding pump 19 or so hours a day. That sucks. Although, in true Isaac fashion he just deals with it. It’s not at all uncommon to see him run through the door and throw it down as he skids to a stop in front of whichever toy he is after. He learned how to walk with that backpack and pump on his back, it’s always been a part of him.
Because of the feeding tube Isaac is big and strong – he is who he is because of that tube. Tonight he proudly showed off his tubie for a picture.