Thursday, October 27, 2011

Food for Thought...

I have been reading this book called Handle with Care by Jodi Picoult. When I picked it up at the library I didn’t really look at what it was about etc. When I got home and I read what the book was about I wasn’t sure I could read it. There would be too many parallels with my life. Basically, it is about a little girl who has brittle bone disease. The mother sues the OBGYN for not catching it while in utero.

I was reading it today and came to this discussion between the OBGYN who is being sued and her husband. He starts talking about his brother who had committed suicide at age seventeen. He had found him. He goes on to say, “Back then no one knew the name for bipolar disorder, or how to take care of it. So for seventeen years my parents went through hell. My whole childhood was colored by how Steven was feeling…..” He then continues, “What if they had been told before Steven was born, that he was going to kill himself before his eighteenth birthday? Would they have taken those seventeen years to get to know him? To have those good times that came between the crises? Or would they have spared themselves – and me – that emotional roller coaster?”

I started crying reading this it really does hit home for me. I ask myself this same question. There’s no doubt in my mind that it wouldn’t have made a difference and I wouldn’t have terminated the pregnancy or anything like that but how would things have been different if we had known?
I think in terms of my relationship with Nicole things would have been much different. Have I taken for granted the time? Yes, I think I did… I feel I was always too busy for her and there was always something that needed to be done and I was always too busy thinking about that to really give her my whole attention. I was too hard on her and I always wanted her to do and be what I wanted her to be. I wish that it hadn’t taken a terminal illness to find this out.

I wonder what would happen if we treated all the special people in our life as though they had a terminal illness?

Have a blessed day!
Jane~mom to Nicole 17 yo, VSD, PAH, Eisenmengers, BHJS

Sunday, October 23, 2011

Week in Review

It was a very long week for me.  It seems like the days are long but time goes by quickly.  I heard someone say this once and it is so true. 

Monday started with a trip to Walmart.  I have certain things that I buy at Walmart because they are cheaper etc.  I really enjoy going as I go with my mother-in-law, Norma, and anytime I can spend time with her it's great.  She is such a wonderful, kind person.

Tuesday was one of the few days we were home all day this month.  I have been doing coaching calls with a life coach and Tuesday is my day for this call.  I would highly recommend speaking to one if you can.  I know that this has really, really helped me.   The respiratory therapist from the oxygen company that supplies Nicole's oxygen tanks and concentrator came by to service the machine. He brought me supplies.  I told him about our insurance ending on Oct. 31st and that Nicole would have Healthy Kids.  I made the mistake of deciding to go to the Healthy Kids website around 9:00 p.m. to see the status of our account and to look up doctors.  I was so upset that only two of  Nicole's doctors as well as her counselor was on the list.  I had a hard time getting to sleep from a headache from the stress.  I should have listened to that little voice and waited.  I try not to do anything related to Nicole's health issues in the evening if I can help it.

On Wednesday, Nicole had a gastroenterologist appointment.  I decided prior to this I would try and call the insurance company used for Healthy Kids to get some idea of what was and wasn't covered especially pertaining to her oxygen needs, her monthly blood tests, and her medications.  The doctor's are not the first priority as they will all be seen Oct. so doctor's unless there's an emergency don't come into play until January.  The lady I spoke with was very nice but couldn't give me much information and suggested I call Healthy Kids to find out these answers who had already told me that I had to call the insurance company.  I was so upset I was almost in tears.   Which wasn't good because then I wasn't prepared like I should have been for her doctor's appointment.  This is one of the doctor's that doesn't take Healthy Kids nor Medicaid for that matter.  I like her so much and will probably pay out of my pocket to see her as she will only see Nicole through 2012 as she is pediatric.  Nicole has been having some increased nausea and has started vomiting about once a week.  She gave me a list of options that we could try from a medication called Zofron used for nausea which she didn't think would be good as a side effect is arrithymia (I know I spelled this wrong), she could take something like Tums, Maalox, Mylanta or she could take her current medication which is the generic for Prilosec twice a day rather than her current once a day.  I said that this matter would be discussed with her PH specialist.  I received in the mail this day four envelopes from the Dept. of  Health with 17 pages of questions to fill out pertaining to Nicole's health issues.  Uggh...

On Thursday, we left at 7:00 a.m. to head to Gainesville which is 2 1/2 hours each way to Shand's Hospital and Medical Center.  We went to the hospital for Nicole to do a 6MW test.  She has done two of these one in Sept and one in Oct at pulmonary rehab.  She did better than she had done the week before by almost or even a little more than 100 feet and she had no oxygen this time.  I watched her and was very proud of her.  We then went down the street to the Medical Center to see the PH specialist, have her EKG and echo done.  It was a good appointment.  Both the echo and EKG were the same with no change which in our world is good news... sure, I want better news but this is good.  I learned from the doctor that according to Nicole's diagnosis of  Eisenmenger's she can't be denied SSI benefits and she has an automatic approval we will have to see about that.  We also discussed her platelet and red cell issues.  Her hemoglobin should be higher than it is due to her health and her platelet count is low.  Her local cardiologist believes it is from an iron deficiency but her PH specialist who is also a cardiologist thinks there is  something else that is suppressing her bone marrow production.  He mentioned something about a test that measures a hormone produced by the kidney I believe.   I will have to talk to the local cardiologist's nurse about this to get more information.  He also said she could take the generic Prilosec twice daily.  We then made it home about 4:00 p.m. with a wicked headache that I went to bed with very early.

Friday was another day that was spent at home. We have been having a taste of fall so I decided to wear sweats and t-shirt with no makeup .... yeah.... I had planned to called Healthy Kids and get some answers but just couldn't do this as after Gainesville I am always emotionally and mentally spent so I decided to get my list of questions down on paper and tackle it this coming week as my biggest priority along with some other issues pertaining to my grants I receive for her medications my only goal for the week.  It seems like the majority of my time is spend on dealing with Nicole's medical issues.  My  phone didn't stop ringing.  I  have been taking a journaling class via phone through the caregiving website that I belong to so I did this.  The cardiologist's office faxed me the report from the GI appointment on Wed. which  is the fastest I have ever gotten a report from a doctor.   I had to call the GI doctor to try to get the prescription changed to reflect 2x daily.  She wasn't in the office and the prescription was for mail order 90 day supply which I have to mail to the company and had to get it out so it went through prior to end of month.  I was questioning whether or not I had heard the doctor right about the dosage of 2x daily when her nurse seemed shocked by it.  The other nurse and office manager called me also to follow up with me on the cost of an office visit to self pay and did confirm that she did mean take 2x daily.  I said I would go ahead and fill the prescription and it would last 45 days and I would deal with a refill at that time.  I also talked to the gentlemen who makes all the arrangements for a dinner that I will be speaking at in Nov.  This will be a separate blog.   It seemed like a long day and long week.

Saturday was grocery shopping day and I just haven't had the time to put into finding and matching coupons etc. so lately my grocery bill has been a little higher which must change.  This is the only area in my budget that I have complete control over.   I was looking for the no-skid socks as on Tuesday Nicole had fallen in the house either my tripping over her feet or her oxygen tubing and hit her head on the leg of her desk. We have tile which when wearing socks can be slippery.   I looked in Target, Publix and TJ Maxx and couldn't find them.  I will probably have to hit the mall.  Norma (my mother-in-law) said there was a sock store someplace locally that she saw advertised on t.v. but couldn't remember what it was called.  I know as we get closer to Christmas I should be able to find some.  My neighbor who has been up in Illinois for the last six months just returned this week and she brought me some squash from her garden.  This was very thoughtful of her.  I received a letter from Healthy Kids saying who are plan provider was which I really knew already but it has a different number listed so hopefully Monday, but if not definitely Tuesday,  I will be calling them to see if I can get answers if not I will call Health Kids and someone will give me accurate answers to my questions. 

It seems that my to-do list doesn't get any shorter it only keeps getting longer but I will continue to plug away at the things that I need to attend to.  I hope that the week ahead will provide the answers that I need at least for November and that I will know by the end of November before I have to pay the insurance premium again if Nicole is approved for SSI. 

Tuesday, October 18, 2011

Doctor's Appointments

We have two doctor's appointments this week on Wednesday and Thursday.  On Wednesday we see the gastroenterologist.  Nicole started taking Omperoloze which is the generic for Prevacid in August I believe for her stomach pain after she ate.  It really did help until about 10 days ago or so.  The pain has come back but it is different.  For the last two Sundays Nicole has thrown up after eating.  The first Sunday I thought it was because of a combination of things not drinking enough liquids as she should have, didn't eat hardly anything, started her monthly cycle.  She complained of dizziness all day.  After she ate dinner she went and laid down for a few minutes which she does every night.  For someone with a lung disease it takes a lot of energy to eat.  The chewing of the food takes energy and the digestion of the food takes energy.  I think what happened is she laid down flat on the bed and got really dizzy which caused her to throw up.  This past Sunday she said she wasn't dizzy but again she laid flat and threw up.  I had to call CVS Caremark on Monday as we get Tyvaso through them and told the clinician about it and she told me to not have her lie flat anymore.  Last night she didn't lie flat.  I will definitely bring this up at her appointment tomorrow.

On Thursday, we head on a day trip up to the University of Florida at Shand's Heart and Lung Transplant Center to see her pulmonary hypertension specialist.  We have to be there at 10:00 a.m. for her to do a 6MW (minute walk) which is a test that is used to judge how medication is working etc.  We have our appointment downstairs at the clinic at 11:00 a.m.  which will include a echo at least.  We are usually at the hospital for at least 3 hours.  I absolutely dislike this appointment very much.  The doctor can tell us that the disease has progressed or something has changed with her heart or that she had to change medications such as going on IV meds.  I pray and pray that this isn't the case. I also pray that something has gotten better but it doesn't.  I will be grateful for stable I have to be because I don't want the alternative.   It is a very draining day and this lasts for a couple of days afterwards.  I pray that this will go well. 

A trip like this takes a lot of work to plan as I must take what seems like half of our house.  We will leave about 7:00 a.m. which means I will wake Nicole at 5:30 a.m. to take her stomach pill which must be taken 30 minutes before she eats.  At 6:00 a.m. I will make her breakfast and get her out of bed.  I will have to make sure we have a large jug of water and a partially frozen bottle of  Gatorade  to take with us.  Her Tyvaso will be mixed and capped and ready to go in a cooler to make sure it doesn't get too warm sitting in the car.  I will also have some snacks as it will be a long time between breakfast at 6:00 a.m. and we are able to eat lunch after her appointment.  I need to take her medicine, her oxygen concentrator, a pillow and blanket along with her hoodie, things to do for all of us while we wait, also need her transport chair so she doesn't have to walk from parking garage (usually can't find a spot in the handicap parking section) and through the hospital.  I also need all the batteries, cannula's etc., for her medication and her O2 machine.  I also have to take my big old fat medical binder which I am going to try to work on getting into Evernote.  I would ultimately like to purchase an Ipad so I can get all her records onto that so I can take that to appointments instead of  binder/laptop but that is not something my finances allow right now.  I have to make sure we have our phones and everything is fully charged.  I know there's other things that we need to take but I am not thinking of them. 

This is another day in the life...

Saturday, October 15, 2011

Pulmonary Rehabilitation

Thursday, Oct. 13th was  Nicole's last pulmonary rehabilitation session.  We have been going twice a week for the last four and a half weeks.  She will have another 6 MW (minute walk)  test and then our last educational class which is on stress management... something that I definitely could use.

On the first day of rehab she did a 6MW(minute walk)  test in which she walked 710 ft.  I am so hoping that she will improve this today.   During her rehab visits she walks on the treadmill, does an arm bike, rides a stationary bike and than does a nu step machine.  Her first day she was able to do 1 min. on the treadmill, 3 min. on the arm bike, 2 min. on the nu step and 2 min. on the stationary bike for a total of 7 mins. total exercise.  I don't have a copy of the breakdown of each piece of equipment from Tuesday but I know she was up to 26 minutes of working out.

I am so proud of the progress she has made.  I know that this has come at quite a cost to Nicole with the fatigue and just overall not feeling well due to the busyness with the rehab and all the doctor's appointment we have this month.

I am grateful for the rheumatologist who really pushed me to talk to her doctors about this and I'm grateful to the cardiologist for actually ordering it.

I am grateful for all the respiratory therapists and all the patients at rehab who were so kind and nice to Nicole. They usually don't see such young patients.

I pray that I will be able to stay committed to making Nicole exercise every day (or at least 5 days) even if she only rides the bike we have for 5 minutes or even if we walk up our street and back so she will not lose what she just worked so hard to achieve.  Just like with other things I will have to be her motivation.