Update: Elijah’s pressures in his heart looked good. That being said he’s been on milrinone for 7 months. The team wants to try taking him off the milrinone for at least a week then do a repeat cath. This is to see if he’s a glenn candidate. While this happens he’s statis 7 on the transplant list. I don’t think he’s going to be a candidate for a glenn but they want to try to save his heart.
(A status 7 transplant is a temporary inactive status on a transplant waiting list)
(Milrinone increases the strength of your heart muscles and widens your blood vessels.)
As for Elijah’s brain, they ended up finding 2 old strokes and a new one. They are small and a Incidental finding. He is okay but he is at risk for a major stroke. The team also looked for clots by his central line and in his heart and none were found.
Elijah does have chiari malformation typ 1
Over all Elijah is doing okay and can’t wait to meet his family for Christmas.
Haley Dec. 13, 2024
Despite the rough patch they experienced just a couple of weeks ago, things are looking better, but the news is always a bit mixed. Despite having been on the active transplant list, the Doctors took him off for a while to see if a Glenn procedure could save his broken heart. Here’s an explanation of that procedure from the Mayo Clinic.
Glenn procedure. In the Glenn procedure, the surgeon removes the first shunt. Then, one of the large veins that typically returns blood to the heart is connected directly to the lung artery instead. The Glenn procedure reduces the strain on the heart’s lower left chamber, decreasing the risk of damage to it. The procedure can be done when the pressures in the baby’s lungs have lowered, which happens as the baby gets older. The Glenn procedure sets the stage for a more permanent corrective surgery called the Fontan procedure.
But after the cath procedure it was determined that Elijah should go back on the transplant list. It is just too risky to procede with the Glenn. As for the stoke (or strokes, two old and one new) they are small and “incidental” at this point but Elijah is at risk for a serious stroke. One finding is the Chiari malformation. Here is what we could find at the Mayo Clinic site.
Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is misshapen or smaller than is typical. The skull presses on the brain and forces it downward.
Chiari malformation is not common, but increased use of imaging tests has led to more diagnoses.
Update: Elijah is active again on the transplant list.
I left the decision to the surgeons wheather it would be worth it to evaluate Elijah for glenn again. They agreed it would be too risky.
Elijah had a good day today. He got moved rooms again. It’s like bounce house in the cicu.
We didn’t get the chance to visit today. It’s been another rough one at the ron don.
Haley Dec. 21, 2024
As Christmas approaches, please send prayers and best wishes so that Elijah and his family can enjoy the day together. And, of course, as always, if you can spare $5.00 or $10.00, or anything more significant, please hit the donate button and give to COTA for Elijah Strong. Merry Christmas
