Thursday Jesse went in for a cardiology check-up with Dr. Villavicencio at Children’s Hospital. It had been 2 months since his last appointment so we were hoping to see improvement in his pulmonary hypertension, but the echo actually showed it had gotten worse. The first step is to increase his medication (Sildenafil) because he was still getting the dose for being 12 pounds. (He is now 16 pounds 3 ounces and 27 ¼ inches long!!!). Then we will go through a lot of other doctor visits and tests to try to determine what is causing the pulmonary hypertension. A primary cause was the heart defect, but since that has been repaired it should be getting better. So now they will try to determine if there are other causes (such as apnea, large tonsils, obstructed airway, lung disease…) Jesse is scheduled to see a pediatric ENT (Ear, Nose, Throat) doctor on June 11th. He will have an overnight sleep study, but they are booked until August. They would also like a swallow study, upper GI, chest CT scan, and cardiac catheterization. The cardiac catheterization and CT scan require a general anesthesia so we will try to schedule those together. Sometime Jesse will be seeing Dr. Ivy, the pulmonary hypertension specialist, and maybe a pulmonologist (lung specialist.) All of these are not definite at this point. We are increasing his medication and will probably redo the echo the week of June 10th when we are in Denver. It is possible that this is a false alarm, and all due to a cold he has had, so maybe all will be better then. But Dr. Villavicencio really felt that this far out from surgery we should have been seeing improvement. Jesse appears to be doing great, gaining weight well, and also gaining strength. He has more head control and raises his head better when on his stomach. He is almost always very happy and content. On the outside he appears so healthy, it is hard to believe something so serious can be going on inside his body. Please pray for wisdom for the doctors and for us in making decisions about his care.
Love,
Kristan
The LORD is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. (Psalm 28:7)
I am so glad I talked to you last night. Without my computer for a couple of weeks I lost touch with the blog. I am sorry to hear that Jesse is once again going to have to go through more tests and there again are unknowns. What a storm you guys are in. I pray that you will find peace in your faith. You know I am here for you and you are all in my prayers! All my love ♥♥ Amee
ReplyDelete