It’s hard to believe after a good night of sleep and with the sunshine streaming in the window that yesterday was such a hard day for our little family. It was hard, though and many of you have asked about Jake and his little tummy and since it gets hard to repeat the story so many times, this is the best way to tell you all what happened. Thank you for caring about all of us!
A few days after we moved to Colorado Springs, Jake got a horrendous case of flu and threw up 12 times in 14 hours. We ended up in the emergency room with him on fluids and he was fine in a few hours. However, our little boy who never barfed (literally, not even the little spit-ups that babies normally have), discovered the apparent joys of hurling food in the wrong direction and after that threw up about five or six times a week. It was always in conjunction with eating new foods or foods that weren’t his favorite. We didn’t think too much about it, but when I mentioned it to his doctor she decided to refer him to an upper gastrointestinal specialist.
We saw the specialist last week and Jake’s inability to eat anything with a lumpier consistency than mashed potatoes along with the fact that he coughs himself awake every morning, concerned the doctor a little. So, yesterday, we headed to Denver to St. Luke’s Children’s Hospital for an upper GI test.
We checked in and headed to the exam room, team of doctors and therapists in tow. We got in the room where all the scary machines were and right away, one of the team members got called away to another procedure. I think that was actually a good thing, because I was fairly nervous by that point, having had about 15 too many procedures myself. All the machines coupled with the sight of the teeny tiny hospital gown that Jake had to wear almost undid me. But, Jake and I had about ten minutes to play on the floor with a huge puzzle and he crawled around and discovered that one of the legs of the chair in the room was shorter than the others. His favorite game is to rock an off kilter chair and so we were both laughing and having fun when the team came back in. When I told them that he had discovered one of their chairs was a rocking chair, they had to see him play with it firsthand and we were all hysterical, which only helped us all relate and see each other as human beings.
We all got suited up and Jake had to lay down on the cold table and then the no-fun began. He was hungry, but not hungry enough to consume the “slightly chalky mixture” they wanted him to drink. I had to laugh at a picky eater being forced to drink something he didn’t like when even applesauce gets a maneuver out of Jake that most contortionists would pay to be able to do. He drank enough that the swallow portion of the x-rays worked ok. It took four of us to hold him down and keep him still for the tests. He got more and more upset by being pinned down and forced to drink weird stuff. He did ok, but, by the time he had to fill his stomach with 8 ounces of barium, he had had enough. No amount of singing or rocking or firmness on my part would get his screaming, back arching little self to drink that bottle. So, as the doctor feared, we had to stick a tube up his nose and down into his stomach so that we could fill him up for the next part of the test. I was holding my own until I saw a tube down Jake’s face. I held his little monkey to his face and cradled his head and tried to be ok, but the tears started. Then, I took a look at Jake’s face and the scared part of me became enveloped in calm and it all went to a safe place. I think God gave me the gift of peace for those few moments so that I could really be there for Jake.
We finally got him still enough to take the last few tests and I was finally able to hold my little guy. The techs gave me room to hold and sing to him until he was calm. Jake, who is never a cuddler, clung to me for about ten minutes. Finally, he calmed down and the great thing about kids his age is that after a few minutes of feeling safe, he was fine. Fine enough to laugh and start to flirt and play peek a boo with the nurses again! I was so thankful for that.
Next we did the swallow tests while they looked at his throat. As the speech and eating therapist said, this was the fun part of the test. Jake got to eat banana yogurt with fun things crunched up in it and he did great. Until we gave him a huge chunk of fruit. Then, he gagged and generally did his thing. Thankfully, he didn’t barf and the therapist said she had seen enough. I scooped the fruit out of his mouth and he was instantly cheerful again. I got him unstrapped from his little chair and got to rock him again. This time it was more for me than for him!
Even though we have to wait for the official test results, the therapist told me that she could see that Jake has a very bad case of acid reflux. It goes all the way up his esophagus into his throat. She said that it is a rarer form of reflux which they call “silent” reflux. Silent because it doesn’t manifest itself at all, except for Jake‘s unwillingness to eat chunky foods since it hurts his throat. We didn’t catch it sooner since Jake didn’t throw up as a baby, doesn’t cry all the time, wake up at night, or do any of the other things that would alert us to there being something wrong. She said that he has been in pain so long that it is normal for him. THAT made me cry!
The acid reflux should have corrected itself by now and since it hasn’t and coupled with the fact that it is such a bad case, they are going to treat it quickly and aggressively. It has already started to affect his behavior and development and we need to get on whatever we need to do to get this under control. We will try medication first, but we have been warned that surgery may not be out of the question. We’ll know more next week when we see the specialist again with the official test results.
Right now, I’m concentrating on what we DO know. Which is not a lot, other than Jake has a fixable problem. And, I can’t give him any chunky foods, which should delight the little monkey! I’ll cross the necessary bridges when we get to them, but I’ve learned that it isn’t necessary to start constructing imaginary bridges to dwell on before it’s necessary. The real bridges are hard enough to cross that I don’t need the pretend ones, too.
I am also very aware of the fact that this IS fixable. There are so many little kids out there who are dealing with the not fixable or treatable things. I saw more than a few of them yesterday at the hospital. I’m thankful that even though this may be a bumpy road over the next few months that it is navigable and doable. It could be so much worse and I’m thankful that it isn’t and have been reminded to pray for those who are walking the impossible roads.
Thanks again for caring for our family. We appreciate so much knowing that you are concerned and are praying with us and supporting us.
And, now I’m going to go hug Jake and once again explain the disadvantages of pulling Lucy’s tail. J