Friday, January 6, 2012

Trip to Gainesville

Yesterday we went for our quarterly appointment at Shand's Hospital.  One of  Rick's customers at work had told us about a different route to take that was quicker and would take 2 hr. 5 min. as opposed to 2 1/2 hours the way we had been going.

We left about 7:35 a.m. as we had a 11:00 a.m. appointment and boy was it cold.   We never know what the traffic will be like etc. so we must make sure we have ample time.

We stopped about 8:45 a.m. or so to grab some breakfast at a rest stop that had dunkin donuts :o) .  We hit the medical plaza in Gainesville about 10:05 a.m. but once we parked and got to the clinic it was 10:20 a.m. It was very busy and I thought great we will be here all day.  I heard a nurse telling another patient that there's actually 12 clinics going on.  I was happy to hear that they all weren't for the heart/lung clinic.

Nicole was called for her vitals as I talked to a lady regarding medicaid.  She told me to pick a plan ASAP because Medicaid would without any notice stick her in a HMO.  I was grateful for this information so this is on my to due list for next week.  Medicaid has that we still have Rick's insurance that expired on 10/31/11 and all Medicaid has to do is look this up which takes two minutes.

I was upset because I had received an Ipad for Christmas specifically to keep all my medical notes/reports etc. on for her appointments.  I am using evernote for this but what I didn't realize is that you need an internet connection to get any of the notes to come up and without Wifi this isn't possible.  I don't know how to remedy this.   I didn't know Shand's password and I must have been in a timid mood because I was to scared to ask and I also was too scared to ask a lady in the waiting room where she got her pill box which I really liked.  I really regret it as on the trip back one of  the pill compartments popped open and I lost her medication at the bottom of her backpack and the pill is very small.

I was also upset because I forgot to bring a copy of  Nicole's blood test results from last week.  I have it in Evernote but didn't have it in the packet of  papers for the doctor. Nor did I have a hard copy with me nor did I find it on my desk this morning so I will have to hunt for it to fax to them.

Nicole had an EKG followed by her echo.  I was asked if Nicole would be interested in taking part in a voluntary 3 year observational study to determine if  Tyvaso causes more respiratory problems than the other meds.  She will be asked questions every three months and will be paid $50. She accepted this and we signed paperwork.

The doctor is so good with Nicole.  He loves her artwork and always looks at it on her Itouch every time we are there.  He showed her a picture on his phone of two dogs and asked her if she could draw them for him if he sent her the picture.  He even said he would pay her.  He asked for her email address and I gave it to him.

The doctor said her heart function was great :o)  Didn't really address her PH other than to say there was no change in her echo/EKG.  I asked about her oxygen intake to make sure that since we are switching oxygen companies she didn't need a high flow concentrator as the company we want to go back to doesn't have them.  The RT (respiratory therapist) at rehab feels that she should be on more oxygen then 3 lpm when she's home.  He said it doesn't make a difference whether she's on 3 or 8 lpm.  He asked Nicole if the 8 lpm that she uses at rehab bothered her and she said yes (it does, she sneezes and gets really stuffed up) and he said she didn't need to be on that high flow.  I said her O2 stats will drop and he said that was okay.  He believes that her low O2 stats are more to do with her hemoglobin being low.  For Nicole when she has this tested we should be seeing a higher number that what it should be according to the labs scale and we are not. The scale is approximately 11 - 15 depending on the lab and she should be above 15 and she isn't.   He wants to get to the bottom of why and I believe for some reason  her bone marrow isn't producing the right amount of hemoglobin.  He had the nurse take blood to do a test that measures a hormone or something in the kidney which will tell them if it is low and her body doesn't make enough if this is the case they can give her medication to raise this level which will raise her hemoglobin.  I think she had this test done already by the hemotologist but I  didn't have that lab result with me nor did I have it scanned.  I should have because I had received this since her last appointment in Gainesville.  I know the hematologist tested her for  IBP or something to that effect and said it was normal.  It was also recommended by her rheumatologist that she have genetic testing to see if in fact her benign hypermobility joint  syndrome is indeed Ehler's - Danlos syndrome which can only be diagnosed through genetic testing.  I am very scared of this test and I am afraid they will tell us something else is wrong with Nicole.  Some rheumatologist and genetist (spelling) believe the BHJS is in fact the same as Ehler's - Danlos.   We need to know because if she has it she has to be treated.  Right now the only treatment for her joint pain is Advil and Biofreeze.  This will be another "thing" that she was born with that the doctor's just poo-pooed away.   This test will take 2 months to get the results.  I guess I will just wait and see what happens with this before I take her to a rheumatologist because unfortunately I don't think the one she was seeing takes Medicaid.  I hope Medicaid pays this.

The social worker also talked to me about Medicaid and my options as well as what to do when Nicole turns 18 and what I need to have in place such as power of attorney so I can speak on her behalf.  I will also need to get an advance directive so that whatever wishes she has will be followed.

While I always hope for a report of she cured... I am happy with the appointment.  However, I still have some doubts about the doctor.  I feel that he is too conservative.  I am hoping I can get a second opinion.   The doctor I would like to see ( who both Nicole and I have met after a presentation at the support group meeting ) but I don't know what forms of medicaid he takes, nor do I know if he will see a minor.  He says he will but it isn't always up to him when he is affliated at a hospital.  The cardiologist was suppose to find this information out but obviously they haven't ... just another reason to do things myself :o)


  1. Having a hard time keeping my thoughts strait and only part way through, but a couple of things I wanted to share. I too use Evernote for keeping medical stuff strait, I finally subscribed and it keeps it loaded where I don't have to access them for it. My iPad had 3G which helps, but can be slow. As to pill cases, I find that putting them in a ziplock helps to prevent the spills. Will try to read more soon.

  2. Jane - here is where I get Mark's pill organizer from. They have quite a few choices. :)

  3. Susan thank you so much. I did end up getting the paid version so I can get access to her medical stuff without internet connection.

  4. Hi Teri:

    It took me a minute to realize who you were. I thought this was a comment from a caregiving blog group that I belong too. Alot of times I will write the same blog and post it on here, facebook, and

    Yes, I did buy a pill organizer from the same company. I am satisfied with it for the most part.

    Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10) BHJS (dx 2/4/11)
    "You're braver than you believe, and stronger than you seem, and smarter than you think."