kclark9830
DIS Veteran
- Joined
- Jul 28, 2014
Ok. I lied.
This was going to be the first park day, but I’m going to slide in a little extra update about R in here. Read it if you want or skip on to the good part. Something popped uo on DW’s facebook last night so I thought I’d just share a little bit of his backstory.
I thought I’d mention this because I just kind of jumped into this TR without any in depth Intros. I really didn’t expect there would be as many people follow as there are, to be quite honest. And I appreciate the ones of you who have jumped back in after my absence from the boards.
But I’m seeing some new names... I know some have said they’ve read past TRs and maybe didn’t comment, but just in case I want to give some background on this guy.
His background and the associated concerns cause us to have some stress during the course of our trip.
When DW was 20 weeks pregnant, we found out in an ultrasound that R had a hole in his diaphragm. It is called Congenital Diaphragmatic Hernia (CDH). They basically said that in addition to the obvious problems, the biggest issue is that he would not have fully formed lungs because they form later in the developmental process and the abdominal organs that were spilling into his chest cavity would crowd them out. They said he had a 50% survival rate.
It became a pretty crazy year from that point forward. We had to go to a different hospital for delivery and neonatal care. That meant they wanted DW to “live” in a hotel adjacent to the campus a few weeks before her due date. They wanted him to go as full term as possible, but they didn’t want to take a chance on delivery occurring somewhere else. Ultimately, they made a surgery room right next to the NICU into a delivery room and whisked him away immediately. After he was born he spent 3 months in the hospital.
It was a series of challenges after he was born. There were surgeries, there were 10 days spent on ECMO (a machine that took the blood out of his body, filtered it, put oxygen in and sent it back into his body), and there were plenty of surprises.
These pictures are R on ECMO and the ECMO equipment
Saw this picture... and I forgot we had Pluto there with him. Kind of explains why he loved Pluto so much on our trip!
2 months old... first time we got to see him without tubes or tape on his face
One of the challenges we had to overcome before he could come home was feeding. Babies with the issues he had, coupled with being fed through tubes and having tubes running down their throats tend to be slow to figure out oral feeding. By the time he was discharged he’d nurse some, but most of his nutrition was through a feeding tube, which is why he had the G-Tube put in. He figured it out, over time, and started gaining some weight through oral feeding. They had us keep the G-tube in until last summer when we were able to show his pediatrician that he had gained sufficient weight over the course of a few months without having to feed through the tube. He’s still a runt though. As of our trip, 3 year old R measured 35 ½" tall and a whopping 23 pounds.
Anyway... Last night marked 1 year since the tube came out.
R gives us a lot of challenges to this day relating to his medical history. Actually, going back to last year, his g-tube didn’t heal correctly and he did have to have surgery last fall to correct that. They also found another hole in his diaphragm around that same time. It could be due to the patch not being attached well or it could be a hole in the patch. They aren’t sure. Originally, they were going to repair that when he was in surgery to repair the g-tube site. Instead, they decided to let him grow more first. He wasn’t showing any signs of intestinal blockage and they wanted him to grow and give them more room to repair it and maybe more material to work with because the hole is very close to the esophagus and aorta so they need as much room to maneuver as they can get. So even more than normal, we’ve been keeping a close eye on him for any kind of abnormal digestive symptoms from him for the past year.
R also has a shunt that was put in during his time in the NICU. He developed hydrocehpalus, kind of out of the blue when we were close to being able to talk about coming home so we had that setback to overcome. They basically told us that this shunt would probably fail in some way after he got to be about 2 years old, because that just tends to happen when they put them in babies. So we feel like we’re on borrowed time before they’ll have to change out his shunt valve or tubing.
Basically, the result of his issues is that reflux is a bit of a problem and we have to constantly watch for any signs digestive problems. Has he pooped today? How long has it been since he did? What did it look like? These are just day to day concerns. We also are very much in tune with subtle behavior changes or irrational behavior that might indicate an issue with the shunt.
And of course, what better to mess with your natural food intake/digestion and irritable behavior than a week at Disney World?
I know several of you are in the medical profession. Over the course of his adventure, we’ve made friends with some of his nurses and doctors. They were heavily invested in caring for him, and for us. One of them worked at night and she was there the first night when he was born and the decision was made that he had to go on ECMO. She actually ended up picking up some extra shifts to come in and rock with him. She made a sign to help her co-workers better care for him.
He had nurses in the NICU that laughed with us, cried with us and some have been there for some of his milestones since. Those of you who are in this field, I just want to let you know I appreciate what you do. I know it isn’t an easy job, but you’re definitely in a position to make a real difference in someone’s life!
I haven't read your trip update yet, but I wanted to say to this...♡♡♡♡♡♡♡♡♡♡♡♡.
I have had two medically needy (that's my own term, and I don't know where or when or why I started using it, but i apologize if it's weird) children. My oldest daughter had cancer at 3 & 9, and she almost went on the ECMO machine at one point but that never materialized. And my youngest was born with a congenital heart condition.
So all I'm saying is I get it, and I'm so glad your son is doing pretty well. I am sorry for the stress of just waiting for medical things you know are coming. It's very nerve wracking and stressful. Hugs to you and your family.