Over a month

Its been more then a month since the last catheter. I am sorry to say we have heard nothing. I have emailed twice, nothing. I will be calling the office tomorrow, because we need a new blood work order and of course to try and poke around on what the heck is going on.
Other then that there is alot to tell you. First, Haley is doing great. She loves school, her teacher and all her friends at school.
She started bloody noses again. Im sure I have written about that. She had one about a week before the last catheter, when I noticed her throat was swollen. This happened fairly soon before, it wasnt like that at the last cath otherwise they would have noticed. Im no doctor but I knew something was not normal. So at the cath I asked the anesthesiologist to take a look that I was nervous about putting the tube down her throat. He did what most doctors do and kinda of said oh ok yeah yeah. So after the cath he came in and said her tonsils are HUGE. He said they are one of the biggest he has ever seen, they will need to come out but that no ENT will touch her until her cardiac issues are resolved. Right when he said that Haley cardiologist walked in and said well its complicated.
Basically as long as she continues to breath while sleeping we will leave them as is for now. I decided I wanted to take her to see an ENT, I knew they wouldnt do anything I just really wanted someone on board, IF something happened they would at least of seen Haley and know abit about her. Well we took her in, I told them I just wanted to get her and her massive tonsils on their record. I accidentally wrote that she has severe posterior bloody noses. So they focused on that for awhile and ended up cauterizing the front of her nose .....after I kept telling her its just a meeting, theyre not going to do anything.. Geez. and the whole time he was doing it Haley kept backing away, the doc kept telling Haley this will stop her nose bleeds, and doesnt she want her nose bleeds to stop.( Haley is smart, when we left she asked us why the doctor thought fixing the front of her nose would help her nose stop bleeding in her throat. HAHA sometimes I wish she said this stuff so the doctor could answer.) Then we got back to the tonsils, the doc came in and informed us that there is nothing they can do right now, because of her heart issues. He informed us that getting her tonsils out will make her PH better and it will probably get her off oxygen at night.
People who know me, know I cannot hide what I am thinking, it shows on my face. And I am pretty sure he saw the total confusion on my face wondering how her tonsils effect the blood flow in her heart and lungs. AND the fact she has had severe PH for years, yet her tonsils only recently swelled. Ok so he also said that once the tonsils swell they very rarely go down. Well they seem to be a bit smaller, but thats just by my eye measurement.
I was very frustrated, it seemed they just wanted to do "something." I just want to be heard. I dont try and act like I know more then the doctors. But Im not an idiot, I deserve to be listened to. At least I think so. :-)
Ok enough about that.
We have a genetics appt tomorrow. There are a few syndromes, Haley fits into. I dont really expect life changing things to happen, but I want her tested just in case she has one that has other issues we havent looked at. With Haley you never know what shes hiding!!

Another young lady passed away today from PH. She was 15. Keep her and her family in your prayers.
Im done for tonight. Ill update more later this week. We love you guys, thanks for caring about Haley, it means the world to us!