Monday, November 22, 2010

Shaye's Story (written by her mother, Teresa)

I want to share our story of PH and how we came to this diagnose in hopes that other families can be diagnosed early enough for treatments to help them live a longer life. Looking back now, the signs were there and were overlooked due to another diagnoses. It is not uncommon for PH to be misdiagnosed especially in children because of all the other illnesses that mimic PH. I can tell you to be your childs advocate and if you feel in your gut like the diagnoses that was given isnt right, keep fighting, go to the next dr. Recently another one of our kids Julia who is ( 8 year old ) has been having some symptoms and the Drs want to rule out PH for her, so she will go tomorrow for EKG and chest Xrays. Keep us in your thoughts tomorrow and hoping for good results.

Here is our story of PH and how it all began.

Shaye was diagnosed with extreme anxiety in 2007, but during the 2 years that followed, her symptoms would continue to get worse, and her Dr would say it was due to her anxiety. Heart palpatations, dizziness, sweating, nausea, chest pains. What we would find out later is all of this was caused by something else, something we could never have prepared ourselves for.

Shaye's story begins on February 19th, 2010. She fell at school in PE and hurt her back. The nurse said she was fine and sent her back to class. She came home and we did heating pads, tylenol, etc and a week later it still wasnt feeling better. We decided to take her to the pediatrician. Her dad took her, and they sent them to the hospital next door for xrays thinking she hurt her back somehow. They told them it would be about 2 hours before the results would be back and the Dr would call us. A couple of hours passed and they called my husband and told him that she had fractured her spine, of course are you kidding me???? Was our reaction. They said she needed to be taken to the Texas Childrens hospitals ER. I left work and went by to get the xrays to take with me. Picked up Shaye, while my husband stayed home with the other 3 children. We left for the hospital which was about a 30 minute drive from Katy where we live.

We waited and waited to be seen, seemed like forever. We finally were taken to a room. The ER Dr first listened to her chest and asked, " she has a heart murmur"? I said no. He said, " she does now and it isnt a good one". He said he was going to go look at the xrays and would be back. When he returned about 45 minutes later, he had another Dr with him who he introduced as the cardiologist on call. Of course when I heard cardiologist, my heart sank. He asked if I wanted the good news, or the bad news first. I said the good news, I just wasnt ready to hear anything else. He said the good news is that her spine and back were perfectly fine. The bad news is something is wrong with her heart! My heart sank. The cardiologst took over, and told me that he was ordering an EKG because the xray also showed an enlargement of the ride side of her heart. She failed the EKG so he told me they were ordering an echo cardiograham. About 3:30 in the morning, they were doing the echo on her. It took a very long time it seemed, at least an hour and 1/2. He told us they were admitting her for more tests. We were taken to her room on the cardio floor about 5 am, and I thought we would be able to get some rest before more tests were done, but as soon as we were in there, the Cardio came in and told me they suspected Pulmonary Hypertension. We had no clue what that was, but our lives as we knew it was about to be changed forever! She had a heart cath about a week later which was the final Ph test. It showed her pressures in the high 90's and the Echo had only showed approx 50. Big difference.

The reason for her back pain when she fell the Dr said that her lungs were at their full capacity due to the high pressures so when she fell she felt pain. We have been told without medication she has about a year. With medication, they arent certain, it all depends on the medications and how they work. Her levels are severe, and all we can do is hope and pray the medications keep her levels low to slow down the progression.

Shaye started out with Tracleer and then Revatio was added along with Coumadin, Prevacid and an inhaler. In August she was having more symptoms of PH and so she went back in for another ECHO and we were told it had progressed severely and would need to be admitted to start the IV medication remodulin. She went into ICU and was in there approx 8 days. It was nothing nice and she had alot of reaction to the flolan and was sick alot. We made it through and her central line was placed and she came home on the remodulin with the cadd legacy pump. It has not been an easy ordeal. There have been so many emotions, anger and just overwhelming feelings dealing with the daily ups and downs with a child with PH. Shaye also has ADHD and can not be treated with medication for it so her body is fighting against the PH and the inability to do what she wants to do. She pushes herself to the limit and goes until she cant go anymore.

PH is a progressive terminal illness, so there is no cure, but hopefully we can slow the progression down. We have taken a step back and learned to look at life differently, because you just never know when your child, or someone you love can be taken from you. Life as we knew it has been changed forever. We have hope, we hope for a cure one day. All we can do is take it one day at a time and take the good with the bad in hopes for that better day to come along with a cure!

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