My apologies for not updating sooner.
We left just after 10:30 for children's hospital. By the time we finished everything and got back home it was 4 p.m. Things did NOT go well. The reason we didn't go in on the weekend was because we knew there was a certain doc on that is less than useless. so we waited and tried to get into the pediatrician but she was booked solid. we were
told that if his symptoms worsened or he developed new ones, such as fatigue, a cough, or more dizziness and fainting. He did, so when we couldn't see the ped, we went to children's ER. Just our luck, Dr. Jensen, who is less than useless was still on duty.
The triage nurse checked him over and we told her what was going on and that he'd had 3 ekg's all showing RVH (right ventricular hypertrophy) and told her about the family trend to congenital heart defects. She said that when they brought the cardiologist down to tell him about him about it.
We were taken straight into a room, and the nurse came in and hooked him up on a monitor (standard procedure when this type of illness) and while she was taking his vitals his respirations dropped to 11, then to 9 alarms were going off like crazy, but I managed to stay calm (not an easy feat let me tell ya!). Well I told her all about
everything too, and she too said that when cardio came down to make sure to tell them about the congenital heart defects that are a familial trend.
Then the waste of skin doc enters. We tell him what's going on, why we were at the ER and not at his docs (cause she couldn't see him and his symptoms were worsening and she told us to go there) WE told him all about the EKGs ALL FUCKING 3 OF THEM, and that they all showed RVH and that he'd had a severe lung infection with bronchitis back in
May and there was concern that it may be a pulmonary hypertension problem causing the RVH. He flat out told us that if we had come there to have a cardiologist come down and look at him then we had wasted everyone's time because that wasn't going to happen........
I was flabbergasted. Anyone who knows me, knows it's hard to get me
in a spot where I'm speechless.
We explained that we were moving and would be leaving on the 4th of Aug and that was why we couldn't get a standard appt because no one could get us in that quick, and what we needed done was an echocardiogram so we could confirm that the RVH was a valid
diagnosis or that it was one of those false dx that happens to be a normal abnormal.
He didn't hear a word I said. The doc sent him over for a chest Xray, and Clark went with him (Ayden wanted Daddy to go), and after they got back, I went ahead and left the room to go to the bathroom and get a drink. When I got back, Clark told me the doc had been in and had said, and I quote "his x-ray looks GREAT, although there is a slight
hyper inflation of the lung". I think I'd be in jail right now if I'd been in the room when he said that. Poor Clark had to suffer my wrath instead as I stood in the room yelling that NO SHIT there's hyper inflation of the lung, they think the RVH is caused by pulmonary hypertension - fucking hello - that is increased lung pressure and size!!!
He told us that he could get us an appt with the cardio clinic on the 8th of Aug - FUCKING HELLO I just told him we were leaving the state on the 4th. So he said he told us they held clinic every Friday and he had called up and was trying to find a way to fit us in. After waiting a while, he came back in and said they weren't calling him back, so there was no point us waiting there, he'd give us the clinic # and would call us as soon as he heard anything about them fitting us in. I left the hospital to wait in the van to protect anyone from physical harm while Clark waited for the nurse to give him the info. During that time, Ayden's respirations dropped again and his ekg set off alarms.
We then went straight to the base to the
tryandgetcare tricare office, and I pled my case with them AGAIN (adding in the full boo hoos and tears). Clark talked to them the first time, without me present.
I explained what we came up against, that our servicing base was in Charleston SC who is part of tricare South region, we are here in Omaha and part of tricare West region, and Asheville NC is part of tricare North region. Dr. Whitcomb, my pediatrician has already offered to write the referral so that Ayden can see a pediatric cardiologist as soon as we get to NC - however after talking to the various agencies, we found out that would not be accepted because of the different regions, and also because there is only ONE pediatric cardiologist in a 50-100 mile radius of Asheville, and oh yes, he IS NOT a network provider *SCREAM* That means we have to get to Asheville, get a pediatrician, get said pediatrician to write a referral, then it has to go to review to see if they will approve a non network provider, typically takes about 6 weeks, and that's IF THEY APPROVE it, if they don't it has to go through appeals process, and then
if we do win and get to see the cardio, because he's the only one it will take up to 4-6 weeks to get an appt.
Keep in mind, if the right ventricular hypertrophy is in fact caused by pulmonary hypertension - primary or secondary - it is already at a late stage diagnosis and is has a mortality and morbidity rate with survival rates lasting no more than 2.5 years.
And when diagnosed in children, it is diagnosed between 2 and 8 and the later it is found, and if fainting and passing out is present, that is a very high indicator for risk of sudden death. So that kind of lenghty delay in even seeing a cardio for further diagnostic testing and beginning treatment is almost equivalent to a death sentence.
We got home and Alex (our oldest son) had taken a message from the cardio center (who we learned when we were at the tricare office is the ONLY one in Omaha) and Clark called them back only to learn that the dipshit doctor at childrens had scheduled Ayden for ANOTHER FUCKING EKG - like the 3 he's had weren't enough. Fortunately my husband is a very wise man and told me nothing of this while I raced around the house attempting to get it ready for the packers to show up at 8 a.m. (because the moving company REFUSES to delay even by half a day) and told them that what we need is an echo to confirm the RVH and it's cause, or confirm that it's a false RVH reading. He then
got ahold of our pediatrician, got the referral done, got her send copies of his blood work and EKGs over and had the cardio clinic get the copies and reports of the chest x-ray and we are FINALLY going to get the test done that we need so we know what we are dealing with for sure.
I have a follow up appt at 4 p.m. with Dr. Whitcomb, our pediatrician to go over what we know, and to have a letter written up with all the info on it, and a referral so that when we get to NC we should be able to get straight in to see someone who can treat Ayden.
So that's the War and Peace version of my day. Of course I still have to deal with the movers and I still have to find time in here somewhere to get over to the schools and get copies of all the kids records, then get to all the various doctors and specialists and get copies of our medical records and then try not to worry about my Mom going in
for the breast biopsy of the suspected malignant lump which she has been trying to have taken care of for 2 years now - and to add some more excitement to it all, when they did the chest x-ray on her for anasthesia, they found a suspicious mass - welcome to socialized medicine, my Mom lives in Canada.
But on the bright side of the story, my eldest son Alex, is now doing superb, he has completely outgrown his emotional issues of his 9th grade year, and he's turned into this really cool person. His clusters are so far well controlled with O2 and we are getting him set up with one of Life Gas' masks and hopefully a demand valve and his
pediatricain wrote him up his letter of medical necessity for O2 and his prescription for it so that we can get set up with Linde as soon as we get to NC.
Ok, that about covers everything, I am starting to feel like Dave E and my Tolstoy versions....
THank you to EVERYONE for all your support and help.
*hugs*
Cat
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