Thursday, February 14, 2008

Happy Valentines Day!!!

First of all, Rhett would like to wish all of his friends, a Happy Valentines Day!!

He loves you thiiissss much!!

Gosh, aren't I just so cute?!?!?

Now for an update from our ENT appointment yesterday. We got the results of the MRI that was done on his upper airway back. Let me just tell you right now they sucked.

It seems his palate is significantly enlarged, which is causing his obstruction. Obviously with his apnea being so severe, it is wreaking havoc on his body. Apnea and Reflux are two of the biggest factors in Pulmonary Hypertension and children with Down Syndrome.

Rhett's pulmonary pressures continue to go up. His heart is continuing to enlarge. Somethings got to give.

So...Here's the deal. We only have two options to get this apnea under control right now.

1. They can do an operation on him called a Uvulopalatopharyngoplasty, or UPPP for short. What they do is go in, remove the Uvula...(the dangly thing in the back of the throat), the tonsils and adenoids, and cut back the soft tissue at the back of his palate to make it smaller. This operation takes only about 45 minutes, but the recovery time is hard, and he will have to be in the PICU for a while where his pulmonary pressures are so bad.

2. We do a trach.

With that being said, this is a fairly new procedure that they are doing at our hospital. (It is done in adults all the time, but not a whole lot of pediatric patients.) The ENT said that they have only done it on 8 patients in the last two years, and only one of them had Down Syndrome, and since children with Down Syndrome have different facial structures, and airways, well there really is no number to give us for a success rate. Which means he may end up getting trached anyways.

Can you hear me FLIPPING out yet?

So here is what we are doing. We are going to go ahead with all of the testing for the reflux, and meet with the surgeon who will do the nissen and G-tube if needed. They rescheduled his PH Probe to the 19th rather than today, because the hospital is full to the brim, so bad in fact that they are triple bunking kids.

So we will be admitted on Tuesday for the PH probe, be released Wednesday, then go back up on Friday for another MRI under General Anesthesia. Then we will still do the Upper GI on March the 3rd, and meet with the general surgeon.

The thing is, is that if he does need the Nissen and G-tube we have to decide which surgery we need to do first. They can't be done at the same time, because it is just too much for his body to handle, especially where his heart is already stressed right now, and his lungs aren't in the best of shape.

I think we are going to go ahead and take care of the airway stuff first. I mean it makes sense to do make an airway better before treating reflux right? Oh, and speaking of reflux, this UPPP will make his reflux worse. So as soon as he is healed we need to be on top of the reflux issues.

Either way, we are headed for surgery sometime next month or the first of April. By then RSV should be winding down, and the PICU won't be crawling with cooties.

As much as I hate to do this to him, I don't want to loose him to the Pulmonary Hypertension, and if this is going to help him live a better quality of life in the long run, then that is what we are going to do. Even if it does mean a trach. I guess there are worse things out there, I just hope and pray that we don't end up with one. I don't even want to think how far back it would set him in his speech that I have worked so dang hard on with him. Can you imagine not hearing him say "cool" anymore? Sniff......

I figure, by the way, that he is going to live forever. With everything we are fixing now, he is going to be the healthiest old man alive. Don't you think?

Other than that I am trying to keep his oxygen on him, but have had to take it off the last couple of days. His skin is just breaking down, as you can see in the pictures, and it needs to heal.

All in all, he is happy and you would never know he is as sick as he is. He is getting into lot's of trouble, and I am constantly telling him "No". He has even started tattling on himself when getting into something. If I am in another room and I hear him saying "No, No", I know I better get in there quick.

I got these jammies for him the other day. He has outgrown almost every set of jammies he owns. These are a size 2T, and I thought he would have room to grow in them, but I guess not....little butter ball......anywho I thought they fit his personality lately!!

Nothing But Trouble, but oh so precious!!

Neener, Neener, Neener!! This is his new favorite naughty thing that he has learned from his two older brothers and sister!!

This is a picture of him and big sister Chloee who is 3 years older than him, and only weighs 10 lbs more. He is all MEAT!!

And don't forget to vote for Chloee to win tickets to Disney Princesses on Ice. Click HERE for the instructions on how to do it. It's really easy!!

Hope you all have a wonderful Valentine's Day!


Niksmom said...

Pam, these are awesome pictures.

I am so sorry to read about still MORE challenges ahead for you guys. I'll continue to pray for you all.

BTW, what do you use to attache the cannula to R's face? Nik's skin used to break down something fierce until we started to use tegaderm instead of those "dots". It's gentler to take off b/c you can literally lift the corners and s-t-r-e-t-c-h them (vs peeling them off his cheeks) and they lift right off. Email me niksmother at gmail dot com if you want more info. I think I even HAVE some tegaderm left I could send you to try!

BiLlY, sAm, AnD bOyS!!! said...

hey there! What ent are you seeing. With tayte's trach we felt really good about his doctor. I wanted nothing more then to hear the doc say "he DOESN'T need a trach" but that isn't the way it turned out for us. Tayte has had his trach ONE YEAR on March 30th. I will admit it has been very hard and i wouldn't wish it on any one but on that same note it has helped him DRAMATICALLY! Let me know what is going on!!! :)

Marla said...

He sure does look ornry! So many things to consider. You know best. Follow your intuition and pray a lot. I will be praying for you all. So many tough decisions. We were told at the hospital that this was their busiest time of the year right now. It was always so busy and I just prayed she did not pick up an illness. I think there were lots of children with the flu.

~Melissa~ said...

He is such a cutie! So smiley :)
I'm sorry that you have yet more trials and big decisions to make.
You are all in my prayers.

Melanie said...

First time on your heart is breaking for you. I can't image dealing with all that you have to on a daily basis. I hope for the best for Rhett and I will be following your blog from now on.

The Bryant Family said...

Hey, I have ran across you guys one other time, I think. Thanks for checking us out. Poor Rhett, Tuck's face used to look like that, he had a ng tube and oxygen and all that crap that tore his face up. We have an Mic Key button now, not as scary as it all sounded. It is just now getting him to eat by mouth. I have to say, i teared up reading your post. These kiddos go through so much, sometimes it seems to be a cruel joke. Isnt it amazing they come out smiling....and teaching us things. I hope all goes well and I will check up on you from now on. Seems a lot of our friends are in Mercy right now. We are desperately trying to stay away...we have RSV already dont need anything else.
I think you beat me in the world of BUSY!!! Love the pictures of Rhett in his batman pj's, tucker has superman ones like it with the cape. I thought it quite fitting since he is my superman. have a great weekend.

rachel said...

Pam - the pictures are so cute! Thanks for sharing. What a stressful road you're facing. Rhett is going to be awesome...just like you said...the healthiest old guy around! We're thinking of you.

Nicole said...

Ooohhh I am at my sisters. Going to go vote again. :) Hey I'm sending a "blanket" donation. Love you!

FBF Rothkopf said...

Beautiful pics. I voted - I sure hope she wins.

I saw your post on the board - may I please send some sheets and mattress protectors? Let me know.

Francine (Sofia's mom)


Anonymous said...

Aw, he is so cute!
I just want give Rhett a huuuuge hug! Oh, and I voted for Chloee!

Carey said...

hi! just checking in and wondering if you ever heard anything from the laundry mat? i'm sure not, just being hopeful. I asked ryan to look through our blankets and stuff, and you wouldn't believe what he brought from home, i was cracking up, definitely won't be sending it to you, but he did bring a crib sheet I'd like to send and I'm just going to stop and grab some fabric and make you a blanket for that boy of mine! i need something to do here anyways, but it's a matter of getting to the fabric store. it's quite a drive from here and it looks like it's going to snow tomorrow. ugh! email me your address please though. hopefully i'll have something in the mail for you early next week. until then i hope you're keeping that kid warm!

~plaid said...

Hi! I came over from your post on KSL to check things out! I am so sorry about all these things compounding for Rhett! I just want to say that we have two children with severe reflux, though we've held off on the nissen. We met with the surgeons, but we don't have the airway issues as severe as Rhett, and the echo-cardiogram shows that so far we've avoided the heart troubles as well, so we figure we have some time to see what new options become available as they grow.

We did have them both in to have their tonsils and adenoids removed, for the apnea issues. They both kept their uvula. I'm not trying to make things worse in your decision, but I just thought I'd share from experience that the reflux , in my experience, makes recovery worse for this surgery. You have the raw and healing tissue and then you add the reflux contents going over the area.

The younger of the two had outside factors compounding things, but was hospitalized for four days following what was supposed to be same-day surgery, and left the hospital on NG feedings for a month.

The other child ended up back in the hospital with post-op bleeding, I think because of the "erosion" from the refluxing in the surgery area. Now, the doctors didn't confirm this, but I really think this is something to consider with Rhett as you struggle with the decisions you have to make.

Your family is beautiful, and it's such a gift to experience their sweetness. It is also quite the heart-wrenching experience dealing with the frailties and uncertainties. I wish you the best of luck as you make these difficult decisions!

Mrs Wibbs said...

Wow... You are going through such a lot and you are doing so well!! Your sweet little guy is absolutely beautiful and a real fighter. It is so good that he is so 'beefy' as it makes him stronger I'm sure. Will be really praying for God's protection over him and you all as a family in the next couple months.

Kaden and Ava's mommy said...

What beautiful pictures, of course having beautiful children helps. I want you to know that I voted for Chloee, I hope she gets to go. What a wonderful time she would have. Thank you for the comments, it really helps Nate and I knowing that people are thinking and praying for Ava. Good luck Chloee. Love, Amy

Kari said...

UPPP they never told me that it was called this but in recovery after Tristans surgery they told me they removed his tonsils adnoids and part of the tissue at the back of the palate. They never mentioned the dangly thing though. I guess I should look and see if he still has one. Yea right he won't even let me brush his teeth since surgery. Tristan recovered remarkably well but he is having issues with the reflux since but my guess is because I am having a hard time getting his meds into him. He is being extremeley oral resistant. I am still waiting on the results from the endoscopy. So I have no idea what's going on with the reflux yet. Thought I'd leave you a message in hopes you'd feel a little comfort knowing someone else recovered well. I know you have alot more going on and I will be praying.

Kari said...

BTW I voted too Hope she wins :)

Kari said...

I checked and he does still have his dangly thing. Every time I read your blog my heart breaks for you. I am not good at choosing the right things to say sometimes mostly because I'm frustrated and wish I could do something to help you feel better.

Childlife said...

First of all, those photos are A-DOR-A-BLE! : ) That neener-neener one is just something else - what a character!

I also wanted to encourage you Pam, that if it does go that way, trachs are not the worst thing in the world. The first month or so with a baby is pretty tough, but he's old enough now that he might not have as many problems with secretions as newborns.

Our oldest had to be trached twice - from age 6 weeks to 1 year, and again at age three for about a month (was supposed to be longer but the little stinker de-cannulated herself)and the second time she could actually talk around the trach. I'll be praying that he doesn't need one though! Lots of prayers for you and your whole family.