Saturday, March 22, 2008

Second verse, same as the first...

Saturday Mar 22, 2008

Second verse, same as the first...

A little bit louder and a little bit worse. (That's from Henry VIII by Herman's Hermits for those of you who enjoy having oldies stuck in your head.)

So, we just keep adding to the number of doctors that Jay has seen in his short little life. We had a follow up appointment Friday morning at 9:30 a.m. with the surgeon at Duke. We fully expected that they would check his incision, remove the stitches where his drainage tube was, say he looks good & send us on our way. We thought we'd be back home by lunchtime. Not so much. Let's just say I'm writing this post from the hospital and we're expecting the Easter Bunny to visit us here on Sunday.

The night before his appointment (Thursday night) was horrendous for all of us. Jay had a screaming fit that lasted from about 6 p.m. until about 1 a.m. It was clear that he was hungry, but when he went to eat, he would get so exhausted that he could eat less than an ounce. (He had been eating 3-4 oz. per feeding in the prior days.) Then he'd fall asleep, and sleep for about 15 minutes. Then he'd wake up screaming and hungry and start the process over again. He never really would eat a full meal and he struggled to breathe even when he wasn't eating. Let me say that there is nothing scarier in the world than watching your child struggle to breathe, and seeing that every breath takes all the energy that he has.

So we discussed the problem with the nurse practioner today, and she was concerned that the tiring out was due to changes in his heart rather than the vocal cord paralysis. Apparently, his EKG looks different, and in some ways worse, than it did BEFORE surgery. That's not to say that the surgery didn't work, but that his heart may have had some additional damage during surgery or since then. Just to be sure that his aorta was still looking open & flowing freely, they did another echocardiogram. Unfortunately, he was moving around and they wanted more detail than they could get with him wriggling. So they wanted yet another echo, this time under sedation. But they really wanted to be certain that under sedation, he wasn't going to have any additional breathing problems. So, it's back to the PICU again.

He did great on echo #2 (this is probably his 7th in 2 weeks!) and woke up with no breathing issues and hungry. So the nurse fed him 3 oz and they sent him out of ICU & back up to a private room. Luckily, this time they kept him in ICU long enough for us to go home and get a change of clothes (and of course the laptop - our only lifeline to the outside world!).

He did great last night - eating like a champ and very minimal breathing issues. I know the doctors think we're crazy, but the struggles he had to breathe on Thursday night were really awful. And while I didn't ever want a return trip through this place, I'm glad they're checking out everything to make sure that he's okay. I just hope he starts gaining weight soon - He dropped from his birth weight of 10 lbs 4 oz to 9 lbs 13 and can't quite seem to make it back up over the 10 mark. Please think hungry thoughts for us!


Hope all is going well. You are still in our prayers. Have a great first Easter with Jay.

Tony & Toni

Posted by Tony & Toni on March 22, 2008 at 08:10 AM EDT #

The Easter Bunny knows where all the children are little Jay! I feel safe knowing you are there and getting that USDA stamp of approval before you get home. I guess vacuum cleaners left on, Alumintum formula, white noise from TV's and radios are not the solution here guys. This is no colic! :-) Sweet dreams for you all, blessings on everyone and prayers of a somewhat normal life prevails soon! Little Jay you bring us sunshine when we see your sweet face. Keep those pictures coming!

Posted by Robin Perry on March 22, 2008 at 11:06 AM EDT #

Thanks for the update. I am glad to hear that he was feeding (feeling?) better today. The whole Black family is pulling for little Jay and his mommy and daddy. We love you!

Posted by Aunt Beth on March 22, 2008 at 12:04 PM EDT #

Uh-Duh... I just saw this comment thing. I bet you never knew I was keeping up with Jay. I am glad he is doing better today and my prayers are for him to continue that way. If anything I am confident of, is that this child is the most prayed for and he is in the Lord hands. He gave Jay to the most able parents to handle his first few weeks in the world.
I hope your Easter is full of blessings and can rejoice not only in Gods gift in redemption but of His love for you giving you strength, faith and understanding with all you have been through.
Love you!!
Aunt Ali

Posted by Great Ali on March 23, 2008 at 03:30 PM EDT #

Know that I am still praying for you and with you reagrding Jay's health.

Posted by Theresa on March 24, 2008 at 10:04 AM EDT #

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