Monday, February 4, 2008

I know, I know........

You all are probably wondering where in the H-E-double hockey sticks I have been. Well......first of all our Internet went down, due to them digging up our road, then we were 2 months behind on the bill, so by the time it was fixed it was shut off by the cable company.

But alas, I am back, and we cut a deal with the company to get caught up. I have decided I need to find a way to go work there so I don't have to pay for my Internet. How cool would that be? Anyways, this post will be full of lots of information, and results, so grab your favorite snack, and sit back and relax for a little bit.

We'll start off with the MRI results. The MRA on his neck was completely normal. We are very grateful for that. The MRI showed that he has a cyst on his brain up where the spinal fluid comes up and around. It is only 7 millimeters in size, so very small and nothing to be concerned about. He also has some soft tissue nerve fibers that show some signs of being damaged, however they look like they have pretty much healed, so there shouldn't be any major permanent brain damage. Basically the MRI showed wonderful results and we are just tickled pink that there is nothing major going on.

They did an Echo-cardiogram on his heart as well, and well, that brought us some pretty scary news. His Pulmonary Hypertension has gotten alot worse. Normal pulmonary pressures for a person are around 17 to 25. Rhett's in the past have been around 48 but never gone above 59. The readings they got last Monday were 98. This was while he was on a ventilator, and not breathing on his own, which means that they are higher when he is on room air, and doing his own breathing. This is really not good. His heart is enlarged, and we have come to the conclusion that his meds that he is on right now are not working.

So now we are left with what to do. We could do a heart cath to see what types of meds he responds to. There are a few things that his cardiologist thinks could be going on.

1. His lungs have been so damaged from the overdose and aspiration that they may never recover, and he could always have issues with his hypertension. (Meaning high pressures in his lungs.) If this is the case our only option is to figure out his right cocktail of meds to treat the symptoms, and come to the realization that his time here with us may be limited due to his heart eventually becoming so enlarged that it fails. I do trust his cardiologist that he will do everything he can to make sure that Rhett gets the best treatment possible, and that we will still have many years with him.

2. This could all be, or alot of it could be a result of his reflux, in which case we are working with his surgeons to go forward with the nissen, as well as a G-tube for the first 5 to 6 months as he heals. His intake is mostly pediasure anyways, so hopefully this will not be a horribly hard surgery on him.

3. Another thought that his cardiologist had, is that just the fact that Rhett has Down Syndrome, and alot of times children with Down Syndrome do develop PH, could be a factor too. But his pressures are too high for there not to be an underlying cause.

So yeah, that's where we are at. We were left with the option to do the Cath first or the Nissen, and we have opted to go the Nissen route, because the meds that they use to treat PH, relax the soft tissues, and they just make his reflux worse anyways. His poor little windpipe and esophagus are hamburger already from the reflux, so the Nissen should help this.

We still don't know alot about his apnea issues. We don't see the ENT until the 13th of Feb, and he is out of town until the 12th, so we just wait.

Now for Andy........

He had his surgery on Thursday the 31st. Things went well. The herniated disks had actually calcified and turned into bone, so they removed them as well as part of his back bone. He has an incision about 9 inches long in the small of his back. I got the pleasure of changing his dressing last night........Ewwwwwwwww.

He is home and up and moving around. Just putting around the house and such. He has spent alot of time in bed watching movies and is going nuts. He hates being laid up. He says that he feels so much better now, but is just week. I am going to have to watch him that he doesn't do too much. His pain is mostly just around his surgical site right now. He is loving that he doesn't have pain shooting down his legs anymore.

To be honest I have loved taking care of him. It makes me love him just that much more, knowing that when he is in pain he wants me to be with him. Rhett is having a really hard time with Daddy being home but not being able to wrestle him and lift him up.

I haven't left the house since Friday, and we have had meals brought into us, which is an amazing help. One last thing I have to worry about. In fact we have meals coming all week. It's so nice not to be eating freezer pizza's and macaroni and cheese every night!

Anyways, that's what we have been up to. Still not too sure what's going on in the housing direction, just taking it a day at a time.

Thank you so much for all of the thoughts and prayers and donations. Every little bit helps, and we are so thankful for each and everyone of you. Andy will be released back to work on April 1st as long as things go well, I keep telling him he should be a car salesman. Anyone who knows him knows that he can talk your ear off and convince you to buy anything!!! His surgeon thought that was a great idea too.....we'll see.

Now, off to catch up on every-one's blogs!!!



Niksmom said...

Holy Cow! That's quite a bit of info. SO glad the MRI was good. Scary about the PH though. Poor Rhett, he'll be more comfortable after the Nissen (well, after he heals a bit) and his throat and esoph. can start to heal! OUCH! I remember Nik would eat, scream his head off, then throw everything back up immediately...all before we discovered his malrotation and did the nissen.

Glad Andy's healing well, too! How are the rest of the kids holding up with all this?
You are all in my thoughts and prayers.

Sustenance Scout said...

Ditto, Pam! Many prayers and well wishes headed your way from Denver. Thanks for the update; I still am amazed at your ability to absorb all this, manage it all, and take the time to share it on your blog. You're one super-mom if I've ever known one. Hugs all around. K.

Brent & Jodie said...

I am in tears right now. For me, just seeing that you had updated brought huge amounts of relief. I have been so worried I almost tried to find a phone number for you. :) Wouldn't you think that was a little odd? LOL Seriously, I have been praying like crazy. Please kiss Rhett for me and know that we are thinking of you.

RK said...

Wow...ALOT of stuff! I don't know about the Nissen, but I know all about g-tubes and living on pediasure. :o)

It's good to get the update. We'll be praying things become clear and the answers start being good ones!

rachel said...

thank you, thank you for the update! i'm glad this past week is behind you - and you made it through! you're a tough cookie! love to rhett!

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

i'm so glad things are going fairly well for you all. Hopefully the nissen will be a big help like it has been for us. Do you have a date scheduled yet? Maybe this little bit of good news will continue and grow for ya! Wish you the best!

Damama T said...

I was just getting ready to send you an email, but decided to check here one more time before I did. I'M SO GLAD TO SEE THIS!

Rhett's stuff sounds hopeful and scary all at once. I'm not sure I'd be able to handle it all as calmly as you seem to. You amaze me, lady!

WAHOO on Andy's surgery success. Tell him to keep his butt resting and don't make me come up there! ;o)

You are in my prayers, sweetheart. Everything is going to be fine, I just know it is!


Michelle said...

That's quite the update! Glad to hear the back surgery went well and he's starting to feel much better; although I'm sure it's frustrating to just be laying around too. Prayers for his continued recovery!

As for Rhett - happy to hear the good news from the MRI, but sorry the echo results couldn't have been better. How frustrating to not know for sure what is causing the higher numbers. Praying the nissen helps!

Sending many hugs and prayers your way Pam!

Megan said...

You definitely are one amazing mom!! I am so happy that Rhetts MRI looked if they can just fix his PH....I hope that having the nissan will help. Please know that we are thinking of you guys and praying for you.

-Alyvia's mom-

Childlife said...

Wow - are you guys ever going through it! Keeping you all in our prayers. I have something for you over at my place Pam. You'll have to scroll down a post, but hopefully it will put a little smile in your day.



Lily said...

Was relieved to see your update! As for sleep apnea, I don't know if I told you that Lily's orthdontist told me that because of our kids facial features being pushed back sometimes the airway is narrowed. That is what is happening with Lily. After tonsils and adnoids were taken out and we still couldn't get the apnea completley fixed I was clueless. I took her to see an orthodonist for a completley different reason and he did a panaramic xray of her head and asked me if she had sleep apnea. When I said yes but they couldn't tell me why he said it might be because her airway is narrowed and he showed me on the xray where it was. She is now getting headgear and mouth expanders, it will help with her having enough room for her teeth as well as helping with the airway narrowing.
I have several brother-in-laws in the car business ;-)!!!

Kari said...

WOW so much for one girl. Your in my prayers!!

Ryan and Brenda said...

Hi, you don't know me but I read your blog and I work from home for a virtual call center, I also know of other virtual call centers that are wonderful that you could work for and still be home with/for your family. Please email me if you want more information! They are legit I promise.

Marla said...

I have so much to catch up on here. You sound like you are doing pretty well considering all the care taking and stress you are under. I am so glad people are bringing you meals. That is a huge help.

It sounds like your husband is a good patient. Some men can be such whiney babies when they are in so much pain. ;)

Boy, when I think I have so many health issues regarding M I read your blog and don't know how you keep track of it all. You should have a nursing and doctor degree at this point.