Health knowledge made personal
Join this community!
› Share page:
Search posts:


Posted Aug 25 2008 6:51pm

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!!!


Post a comment
Write a comment:

Related Searches