I could use some prayers today.
Yesterday we were at the ED with my 3yearold. Everything seemed okay when we left. He had been vomiting a lot the previous 24 hours, and late Tuesday night he started throwing up blood. That’s when my wife and I took him in around 2am. We ended up being there about 12 hours, and when we left it felt like he was finally on the mend. But after we got home he slowly started getting worse again, and this morning he started throwing up again.
The worrisome part is that he has a rare syndrome called Vascular EhlersDanlos Syndrome (vEDS). A lot of you may be familiar with Hypermobile EDS (hEDS)…that’s where joints are extremely flexible, people can contort their bodies, and they deal with loose joints, sprains, dislocations, and stretchy skin. It’s all connective tissue.
vEDS is similar, but instead of the joints and skin being the main issue, it affects his hollow organs. So, we’re talking about his vascular system, stomach, esophagus, intestines, colon; basically,everything internally that you don’t want to be fragile.
We found this out when he was born with a facial cleft. We were expecting a cleft lip and palate, but what he had was much more severe. It’s called a Tessier facial cleft. You can look it up if you want, but I won’t post pictures. He’s had five surgeries so far to put him back together, and honestly, he looks amazing considering where he started. When he was born like that, they did genetic testing to figure out why, and that’s when we found the mutation. It wasn’t inherited, just something that happened as a mutation.
Because of that, blood in his vomit is a major red flag. As a parent, your mind goes straight to worstcase scenarios.
He made it through the night with a couple episodes of diarrhea, but before I left for work this morning he started throwing up again. We’ll likely head back to the ED, but it’s concerning because he had a GI virus a few weeks ago; same thing the whole family had. So why is he dealing with this again?
He’s such a good kid. I know vEDS can shorten life expectancy, but from what we’ve read and researched, major symptoms usually don’t start until puberty. So, seeing things like this now is pretty concerning.
The doctors attributed the blood to the force of the vomiting, calling it a MalloryWeiss tear, which was honestly my suspicion from the start. The blood work backed that up; his hemoglobin was normal, so there’s no sign he’s actually losing blood internally. The rest of his labs point more toward a viral infection.
I think the biggest challenge right now is just keeping fluids down long enough to keep him hydrated. My assumption is that the reason he improved while we were at the ED was because he was on IV fluids. He also had a fever, but that seemed to come down pretty well with Motrin.
At this point it’s just tough. He’s been in the hospital a lot in his 3 years of life. He handles it about as well as you could expect; he’s compliant, listens to the doctors, but it still isn’t easy watching him get poked and go through more interventions every time.
The kid is honestly a miracle and I know prayers work otherwise I don’t think he would have done as well as he has.
So I am requesting prayers and are very much appreciated.