Friday, February 08, 2008

It's a WRAP

Eli had his esophageal manomatry testing today at Childrens as a follow-up to his impedence probe from the middle of December. The poor little man cried and I don't blame him. The tube for the probe was an 18 Fr (about the size of a pencil in diameter!) and he kept saying, "I don't want the tubie in my nose". I felt like the worst mother in the world. We made it through the 1.5 hours of testing and his motility team gathered the important information they were searching for. He definately has a delayed swallow with both liquids and solids but it looks like his motility all the way through his duodenum (the upper portion of your small intestine) is okay. With solids Eli cannot form a single bolus and swallow. He delays, forms 3-6 small swallows, and then takes forever to get them all down. This is leading to aspiration. He usually can get his liquid down in one bolus but the swallow is delayed.

I left the appointment trying to hold back tears so the boys didn't think mommy was crazy or that anything serious was wrong with Eli. I knew this moment was coming but it was SO HARD to actually HEAR it from the doctor. After compiling Eli's impedence probe results that did show aspiration with his reflux (yes, I did say reflux), his decrease in respiratory status since the early fall, the upper GI that showed no evidence of his fundo being intact, and the results of his esophageal manometry today......they are recommending Eli get his Nissen Fundoplication re-done as soon as possible. :( :( :( :( :( I knew those words were going to be spoken months ago. I knew Eli was refluxing again. I knew Eli's lungs were getting worse again. I knew Eli was choking, coughing, and wheezing. I knew I didn't want to ever hear those words again.

But I did. And it is a sad truth. But a truth we had to deal with because there is nothing left to do. Why does this have to be so hard? Another 5-6" incision down his abdomen through already scarred tissues. His surgeon will have to take out the mesh that is holding his abdominal wall together from the incisional hernia that developed after his first Nissen fundoplication surgery. Will they have to move his feeding tube site again? How will he react to anesthesia this time with his respiratory comprimise? He almost died from FTT after his last fundo, will it happen again?

All these questions and more won't stop running through my head. I just want to make everything better. But unfortunately a hug and kiss won't fix it all this time.

9 comments:

Alisa said...

Kellie,
I was checking to see how Eli did and I'm so sorry you are feeling overwhelmed. It's probably even harder since you have the knowledge of being a NICU nurse and you can somewhat see what lies ahead... esp. how you stated you had this feeling months ago. I feel like you do alot in regards to putting them through testing, not because we want to but because we have to and it's such a hard spot to be in as a parent. I'll be praying for him and the rest of your family for strength and encouragement. He's one tough cookie I tell ya& he'll get through this!!!

I had a rough day too of worry and tears. I noticed yesterday Ava rolling her eyes in the back of her head and it happened this morning and while swimming. It is very brief & quick and I happened to catch it on my camera and it validated that I had seen something different going on with her. We are headed to the pediatrician tomorrow and I'm sure he's going to say go to children's for an MRI or EEG study to see if she's having petit mal seizures. I guess the roller coaster never stops?! Hopefully it will.. what would we do without hope?! We'll see but I'm hoping I can watch to see how frequent this might ocurr or if it might stop before putting her through a bunch of tests.

Try to give your mind a break the rest of the weekend. You are a great mom to your boys!!!

Hugs to you!

Andrea said...

Big Hugs. I think of you and your boys often and always wait to see some good news from those doctors. Mr Eli is such a trooper and I know it's a big let down for you. I will be hoping that all those questions you have get the best possible answers. ((HUGS))

abby said...

Kellie,

I'm so sorry that this is happening again and I wish I had some sort of words that would help make things better or at least help you feel less overwhelmed and provide some sort of comfort. And I wish I knew what was making these stupid fundos come undone in the first place... Meanwhile, I just wanted to let you guys know that I am thinking about you and praying that things go smoother this time.

Jessica (ivy&rosesmom) said...

(((hugs))) I am so sorry that you guys are having to go through this again. I hope everything goes well and that Eli doesn't have the same problems with the surgery that he had last time.

tiffany said...

Big hugs Kellie. My prayers are with you always. Eli has come so far this past year I am confident he will get through this second surgery better than the last one.

Emily said...

I'm so sorry you're going through all this (again). Eli & your family will be in my prayers.

Shannon said...

Wow. I can imagine what it took to hold back those tears. I am so sorry that he is having to go through all of this again. You will be in my thoughts.

23wktwins'mommy said...

You all are in my my thoughts. I am sorry Eli and your family have to go through this again. Please keep us updated.

kvegas911 said...

I am praying for you and your family. I am sorry that you have to go through this. I would rather be stuck with hot pokers than to have my child hurt, too. Sending hugs to YOU, Mommy. You need them too!