Wednesday, November 5, 2008

Another Awareness Month.....

Many of you know that Rhett has struggled with Pulmonary Hypertension. (PH) I don't think there are many words that can make my heart and stomach drop like these.

PH in short is basically high blood pressure of the lungs. Okay, you say, no big deal. Well it is a big deal because when you have high pressures in your lungs, then it makes the right side of your heart work harder. Your heart can only take so much of working so hard before it eventually just gives out.

It's funny because so many people struggle with the diagnosis of Down syndrome with their children. But when you are told that same day that your child has major heart and lung issues, the Down syndrome is kind of put on the back burner. For me, I have always been super worried about Rhett's heart. Whenever anything goes wrong health wise I worry about that little heart of his.

After Rhett's overdose, we were faced with the fact that his already damaged lungs, had become more damaged. Not only was Rhett fighting the PH, but he was also now fighting chronic lung disease due to the scaring in his lungs from aspirating when he coded.

Earlier this year Rhett's pulmonary pressures reached an all time high of 98. (normal being in the 20-30 range.) We were scared. His cardiologist was calling us once a week, I guess just to make sure that he was still alive. I don't know. But we decided that some things needed to be done to see if we could help Rhett's PH, because really there is no "cure" for it. You can treat symptoms, and you can try to figure out what is causing it, but that is about it. This is what started our whirlwind of surgeries and hospital stays in March of this year.

We started out with Rhett having a Uvulopalatopharyngoplasty done. This is where they removed most of his uvula, trimmed his soft palate back, took out his tonsils, and brought his muscles in his throat upwards to help stabilize his airway. It was thought that these issues were causing severe sleep apnea, and that can be a huge contributor to PH. After that surgery was when we started dealing with all of Rhett's swallowing issues. We were in the hospital 4x with only a week or two break in between. They did a swallow study during one of these visits and found that Rhett was silently aspirating anything thinner than pudding, meaning that everything he drank was going straight to his lungs.

So we stopped all foods orally for a while and he just had his NG tube. We watched his pressures, and he seemed to be still having issues. We decided that it was time to do a Nissen and a G-tube since he couldn't seem to stay out of the hospital due to aspiration issues, even with the NG tube. 2 months after his surgery for the Nissen, we had his tethered spinal cord surgery. At this time they did a sedated echo to see if any of these surgeries had helped.

We were pleased to find that his heart had shrunk significantly and that his pressures were returning to the normal limits.

THAT my friends is nothing short of a miracle. Rhett is still on meds for his PH. We don't want to mess with a good thing. He also is still on oxygen at night, just so that his heart can relax. Oxygen is a beautiful thing for helping PH. But we are lucky that for now from a PH standpoint he is relatively stable.

Many people aren't so lucky as us, and PH claims many lives. It is possible to do a heart lung transplant, but that has many risks involved. We have been told that if it came down to it, Rhett would more than likely not make it through something that invasive, so he wouldn't be a candidate. Thankfully we have never had to go down that road.

So, my dear blog readers. Sometime during this month, if you could wear purple for a day in honor of our sweet little hero who has fought so hard, we would be honored. Then if you could send us a picture, we would love to post it on our blog. Don't just do it for Rhett, do it for all of the amazing people out there who are fighting this horrible disease, and for those who have lost their battle with it.

E-mail your photos to

Rhett thanks you from the bottom of his beautiful heart.


COOLWHIP said...

Eva also had PH when she was born. And yes, DS was the least of our worries. On the top of that list was her high white blood count that they told us was most likely luekemia. Turns out she was just born with pnumonia. The 2 holes in her heart were just under the PH on that long list.

Heart Mommy said...

Saw the funniest comic last night on tv. Some darling lady from chicago talking about the only people who get REAL "GOOD" health insurance is inmates.... SO she said she was going to have a momma's go to jail day so she could get great free insurance for her family.. It made me laugh... How about it Pam, you wanna do a minor crime to get some awesome free insurance...HEHEHEHEHE!!!! Just kidding...It made me laugh... They also get free education while they are in there, think about it... food, lodging, free medical care, and an education... HEHEHEHE.... Being in jail is serious, just the way the comic said it made me laugh.

My Three Sons said...

Thank you for your story. I will be wearing purple in honor of Rhett.

Carson aspirates when he eats and drinks as well. He is on a thickener called Simply Thick. Has anywone tried that our with Rhett? If is as thick as honey and I put it in everything he drinks. That is why when we had his tonsils out, he couldn't have ice cream.

Anyways, take care!


Becca said...

I'm wearing purple today for Rhett and PH. A woman I work with was wearing purple this morning, too, so I told her about it. Won't be able to get a photo, though, but trust me, it wouldn't be that spectacular. I'll get Samantha in purple some time this month and send that along. :-)

McKenna said...

Darah also has PH and there is a constant fear of it worsening at all times. I have always dreamed of snow trips to the mountains with our kids and Darah cannot go to high elevation destinations. It makes me so sad, but it mostly scares me because we don't know if it is going to elevate or start causing real problems. I didn't know it was PH awareness month! We will most certainly wear some purple in honor of little hero, Rhett and Darah and all the people who have been affected by this chronic condition!