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.