Jethro Update

Wednesday, Jethro had a brain and heart MRI. He had to be sedated and intubated for the procedure, so he was not allowed food after 6:30 in the morning. I was able to give him Pedialyte until about 10:30. Check-in was at 12:30. We went in early, because he also needed to have his INR (measures the coumadin level in his blood) checked. They were 2 1/2 hours late getting him in for the MRI, so it was a long day! He kept the nurse anesthetist on his toes, but they said he did well. He took 10mL of milk while in recovery, so I was very happy about that. Poor little kid must have been starving, and he was a little hoarse sounding from being intubated, but it was a milestone for his oral feeds! It was 7:30 before we got away from the hospital.

Yesterday, he had an appointment with feeding and growth and Karen was very happy with how well he's doing. He's taking between 4 and 5 ounces orally per day now. After watching him, she thinks it's mostly an endurance issue that's he's not taking more, so we are hopeful that after his surgery when he is better oxygenated, he will begin to take more by bottle.

Today, we had our first in-home physical therapy session. He's had PT up at Sacred Heart, but we haven't been able to connect with the gal that is supposed to come here. We've had appts set up, but every time he's ended up in the hospital. So, today's appt was only about a month and a half or two months in coming. We visited some, she observed him, and then did an evaluation. Mostly, physically, he's at about the level of a 3 month old. He does have some things he does that are spot on age wise, but he is definitely behind. However, when you figure in the amount of time that he's spent in the hospital, then it puts him right at 3 months. Overall, it was an encouraging visit. He'll have one more appt with her before he's admitted to the hospital for surgery.

Right now the plan is to go in the morning of the 17th, and he'll have an appt with the surgeon, and then we will head across the street to the hospital to be admitted. On the morning of the 18th, at 7:15, he'll be in surgery. Here is a post I wrote not too long ago that has a link that explains what this next surgery will be.

He's also having some mucous issues. As best we can tell, just from observation, he is not swallowing his spit. It would seem that it is draining down his throat, but not getting past the esophagus. After about so much collects there, it gags him and he throws up. Poor little punkin. He strains and strains to get it out. I have never seen a baby that struggles so hard to throw up. And he's not necessarily throwing up the contents of his tummy. So, I'm hoping that the next time we see the Dr. he might have some suggestions for ways we can help him.

So, that's been our week. Just a little busy. :-) Please pray that Jethro would stay healthy and this next surgery can go forward as planned. His O2 sats are all over the place, it doesn't really even matter how much oxygen he's on. And, he's getting tired of the cannula. He manages to get it out of his nose, and when we place it back, he really hollers about it.