Friday, April 11, 2008

Home!!!!!!

And finally some answers......

So it seems that Rhett has a little condition called Dysphagia. Basically what is happening is he is aspirating liquids when he swallows them. The worst part is, is that he is doing it silently, so we had no idea.

What this means, is that when he is taking a drink of something, like his beloved Pediasure, and he swallows it, rather than going down the esophagus into the stomach, it's going straight into his trachea and down into his lungs. When he does this, he doesn't try to cough it out or anything, he just let's it all go down.

Nice, eh?

So here I have been told that we need to try to get him to drink liquids, and since he has lost his ability to suck on his bottles, I have been trying to give him liquids through a straw not knowing that it's been going into his lungs.

Here's the fun part, we have no idea if he has had this since he was born, or if it's from the airway surgery. So we will repeat this swallow study in 4 to 6 weeks. If he still has it, then they will put a G-tube in. We still don't know about the Nissen, but go in the first week in May to the Dysphagia clinic at the hospital and we are also getting a referral to the GI Dr.

Meanwhile, the feeding tube that we thought we would only have for a week or two, is now looking like it will be for a month or two instead. If we do give him any liquids, they are to be thickened to a honey consistency, and we are only supposed to do it a little here and there so that he doesn't develop an oral aversion, and to help build up the strength in his mouth.

He can still eat soft solid foods like his favorite, Spagettio's and Green Beans. But most of his nutrition, and all of his liquids as well as meds will be via NG tube.

So basically the reason he was acting so yucky was that I was pushing the fluids trying to get him to come off of the feeding tube, and it was all going to his lungs. But once we got him in the hospital, and only receiving IV fluids, and tube feedings, he was able to clear out those lungs and his sats got better, and wow, he is my Rhett again.

We still have a long road ahead, but it feels really good to have some answers.

Oh, also Andy made a mistake last night with the heart rate thing. The reason his cardiologist was in there, was that his heart rate was 42, not 62. Have I ever mentioned that for a child Rhett's age usually when the heart rate drops to 57 they start chest compressions? Yet here is my little boy, who doesn't play by the rules, lying in bed fast asleep, nice and pink and puffy, and a heart rate of 42.

He had more than a few people squirming last night.

We have officially gone from the label of Bradycardia to Extreme Bradycardia, and boy can he send those monitors into a fury of bells and dings. But the good news is that his heart was firing the way it should during these episodes, and he had good wavelengths, so they weren't too worried about it. Just him I guess.

We have cut down on his Pulmonary Hypertension meds.

Oh, and his pulmonary pressures have gone down. He had an echo yesterday, and his heart function is good, he still just has mild to moderate leakage around the tri-cuspid valve, and his heart function is good.

He did however think that we were torturing him with the gel to do the ultrasound, and was getting his feeds at the same time, and puked all over the technician. I looked at her and said, "So where he's so upset, do you want to stop his feeds?" then she says, "Uh yeah, I guess that would be a good idea." ( This was his floor tech, not the one doing the echo). Here's Your Sign.....

So yeah, that's our last two days in a nutshell. They have increased his feeds to smaller amounts over a longer period of time, so he is hooked up to his pump alot. We are going to be doing alot of movie watching, and it's going to be hard on him where he is generally an extremely active child.

I think I am going to have to invest in some more Elmo's World and Sesame Street DVD's because the 4 that we have are driving me CrAzY. I can watch Signing Time over and over and sing the songs, and I don't get sick of it, but man there is something about the same Elmo movies over and over that just get under my skin. I just can't resist that cute little voice saying "Ah-Moe!!" I give in, I have gone soft, I admit it.

Anyways, that's it for tonight. If I ramble, I am sorry.........No sleep can do that to a person. I am going to love sleeping in my own bed tonight, and I swear if anyone comes anywhere near us with a thermometer and a blood pressure cuff at 12 am and 4 am tonight, there will be problems, big problems......... ;)

Thanks for all of the prayers. We are so blessed to have such wonderful friends.

21 comments:

Tami Acord-Nelson said...

Glad to see that you are home. And glad that you have answers- sort of. Hopefully this will get you on the mend.
Great to meet you both today!!

Tami
Thatchers mom

RK said...

Yay for home! Yay for your own bed! Yay for him feeling better!

I know how frustrating that NG can be, but you'll do great dealing with it for a couple months. You just vent to me if you need, been there, done that!! If you end up going the g-tube route, it'll be a relief. It was for us, even though I was totally afraid of it.

We'll keep praying. You get some sleep.

Sis Sarah said...

http://www.parent-2-parent.com

Is a very good site to help with tubes, dysphagia, reflux, nissen/fundo's, ect.

We haven't had to deal with dysphagia (although the pulms thought my son's oxygen needs were because he was silent aspirating, they were wrong though) there are many on this site that have and can give some good advice if needed.

good things to thicken with, things live vital stem to help ect.

Glad he's feeling better!!!

Glad your home!!!!

Sarah

Childlife said...

YAY!!!!!

Oh Pam, I so glad... and so relieved. I've been praying like crazy for you guys hoping they would figure out what was going on. I'm so very glad you have some answers and your sunny little miracle boy back again. We will continue to keep all of you in our prayers.

Damama T said...

I'm so glad to hear this good news! At least now you can have a good weekend at home with the family. Get some rest and take care of yourself, too.

Kari said...

Tristan had this problem for the past 4 years. If he drinks from a cup/straw/sip cup he aspirates. If he drinks from a bottle he seems to be able to manage fluids bye mouth. This is why we were able to avoid the feed tube. He prolly could have tolerated thickened fluids but hated them. Does Rhett digest slower? Tristan had 87% of stomach contents when he should have had 14% so I have to feed him small amounts more frequently and since I reduced his fluid intake per sitting to 3oz his reflux is way better. Since surgery he has been using a sip cup (like Rhett he would not take the bottle post surgery) so far so good but who knows it is silent. He will be having another swallow study in May to see if he is aspirating still. He was not diagnosed at birth but later when I attempted to switch him to a sip cup.
I am so happy they figured this out and hopefully Rhett will get back to his happy little self. Those photos broke my heart and have been imprinted on my brain over the past few days. Poor little guy. I hope you have the most peaceful sleep ever! Home sweet home!! (((HUGS)))

Niksmom said...

Yay for home, your own bed...and ANSWERS! So glad they found the cause.

Hey, on the ELMO vis, email me offline (niksmother at gmail dot com) nd tell me which ones you have already. We have a bunch of them that Nik doesn't really watch. I'd love to share them w/Rhett!

Kitty, Nathanael's Mom said...

Oh Thank God you are home with some answers! How frightening to learn what was happening but I'm glad they did figure it out. Poor little man!

Continued prayers and wishes for strength and better health in the months to come. Hugs to you all.

~Melissa~ said...

I'm so glad you are home and that you got some answers! I hope the adjustments you make help him - glad to hear he started to feel better in the hospital.

StephthefutrRxDr said...

I'm so happy that you guys made it home and finally have some answers, I've been praying every night for Rhett to feel better. This seriously made me happy :)

Melissa said...

SOOOO happy that you have answers and that he's feeling better. We love you guys!!!!

Melissa, Bill, Garrett etc.

Anonymous said...

Glad to hear Rhett is doing better. If you get a second, you should post which Elmo videos he already has. We may have some to pass along!

Carey said...

I'm so happy you guys are home! What a nightmare, and seriously, I'm feeling you with the 12am and 4am vitals!!!! ACK!!!!

Melanie said...

Yah! Some answers!! I am so glad you are home and you don't have to do quite as much worrying.

somebody's mama said...

Elainah and Rhett should be best friends. She has silent aspiration too. We thicken. What's worse...NO insurance will cover that cost. Bleck.

hugs to you and Rhett...

Anonymous said...

oh, so happy that you are home! and that you have some answers! I'm hoping for a smiley Rhett picture tomorrow...until then, I hope you are BOTH getting lots of sleep in your comfy beds..
Debbie and Binny

Marla said...

Thank goodness you are home now and hopefully not going back any time soon. I am even more happy they found out what is going on. There is so much going on with Rhett it is overwhelming. You guys are amazing. How are all the kids handling everything? Hang in there. Hugs and prayers.

Tonya said...

Happy to hear you are home now and have some answers! I pray for Rhett often. *hugs*

Ann said...

I found your blog rather randomly but it really captured my heart. Rhett is only a few months younger than my son and I have just fallen for that smile. I think about you and your family every day and pray God's love, peace and health for all of you every day.

Ann

Mary said...

I just found your site. Rhett is such a cutie! He's in my thoughts and prayers.

little.birdy said...

Ah yes, dysphagia. That'll do it. I'm glad you got that cleared up! Go Rhett! Swallowing goes to the tummy, not the lungs! Remember this!