Update ...

It has been awhile since I have written on here which one of my goals for 2014 will be to be more consistent with my writings.  A lot of things have gone on with Nicole’s care in the last couple of months. Just a brief recap for those who don't know me or are coming here for the first time.  I care for my 19 year old daughter, Nicole, she has a laundry list of health issues starting with generalized anxiety disorder, obsessive compulsive disorder, benign hypermobility joint syndrome (which is basically loose joints that cause joint pain), idiopathic thrombocytopenic purpura (ITP) which is a bleeding disorder that is caused by a low platelet count, she also has several holes in her heart which she was born with but went undiagnosed until she was 15 years old which caused Eisenmengers Syndrome (reverses shunting of the heart the blue blood which is oxygen poor is going to her lungs instead of extremities) and pulmonary hypertension (PH) which is high blood pressure in the lungs which causes the arteries in the lungs to close up. The PH is progressive and will eventually lead to a lung/heart transplant.

Nicole has been a patient at the transplant center near our home for the past year. In Feb., it was determined after many tests that she would need a lung/heart transplant as opposed to a lung/heart repair. Her heart is repairable but not unless it is at the same time as a transplant and it would take to long. Every three months Nicole would be seen and have routine tests to make sure that she isn’t declining.

At the end of August Nicole went to the transplant center for a three month visit. The doctor didn’t like the results of one of the tests that she took. He thought that maybe her  Remodulin (continuous medication that she receives through a catheter in her skin)  was the culprit and the dose was too high. This led to a visit with the PH specialist for his opinion and he absolutely did not believe that her dose was too high (if anything, he thought it probably needed to be increased)  and didn’t believe that Nicole was declining.

At the beginning of October Nicole saw her congenital heart defect cardiologist for her six month visit. At this time he stepped down as her doctor (his partner had been the one that diagnosed Nicole in 2010). He sited the reasons as lack of communication from her doctors. Nicole sees a psychiatrist, a hematologist, a rheumatologist, a gynecologist, a PH specialist in addition to the transplant center and the only correspondence he had received between April and October was from the gynecologist. He also does not agree with the recommendation of the transplant center that Nicole needs a lung/heart transplant. He believes she can have a lung transplant with heart repair. I was very upset by this and I let both the PH specialist and the transplant center know this. I had a lengthly phone conversation with the PH specialist and Nicole was seen at the transplant center at the end of October to discuss another cardiologist. The transplant center didn’t want us to find another cardiologist and wanted Nicole to see the cardiologist at their center. Nicole was fine with this. On November 11th we saw the new cardiologist. The appointment didn’t start well when the doctor walked in and asked about a second opinion which I had asked for back in March but we never followed through because Nicole decided she didn’t want to do this. We told the doctor again that Nicole didn’t want to go ahead with a second opinion and she was comfortable with their recommendation. He said that she would probably have to go out of state as they didn’t do heart/lung transplants at the center. Once I picked myself up off the floor, I asked why after a year are we just finding this out? Of course, there was no explanation for this. After this appointment I sent an email to the lung doctor at the transplant center (who we have seen every time we go there) asking him the same question that I asked the cardiologist. I also sent another email to the PH specialist letting him know what was going on. I didn’t hear anything for two weeks from the transplant center until the day before Nicole was suppose to get a test done that they had set up to cancel the test until the doctor could be present. I said in light of the last appointment she wasn’t doing any testing until we had some answers.  It was our understanding that they were referring us to another center so Nicole wasn't a patient there anymore.  

The following week right before Thanksgiving  we were called with an appointment for Dec 18th to see the doctor at the transplant center. We saw her PH specialist on the 17th and had an idea of the “issues” that the transplant center had so we didn’t go to the appointment totally in the dark. The first thing that didn’t go right was the fact the appointment was at 11:00 and we didn’t see the doctor until 12:45 p.m. The second thing that didn’t go right was he refused to allow me to tape the appointment even though I have asked in the past and he has allowed it. The PH specialist had told me that the transplant center had said we had misinterpreted what the cardiologist had said so my question was “how do you misinterpret we don’t do heart/lung transplants at this center?” Of course, I still didn’t get an answer other than “I understand were you might think that.” He contradicted what the cardiologist said and told us that they did do heart/lung at the center. Another issue was that he wanted to see more of Nicole and less of me. This is fine… but I will not just sit back and let a doctor tell us what to do and do it without knowing why it needs to be done etc. because as I told the doctor… “at the end of the day I was the only one who truly has her best interests at heart.” I also told him that just because I called him on things and questioned things do not take that out on Nicole. The transplant center now wants us to get a second opinion and even if I hadn't asked for one they would have... this was never expressed to us before. The doctor also was uncomfortable with Nicole and didn’t think that she was “emotionally ready for transplant” based on her visits and didn’t believe that she would be compliant with taking her medication and doing the tests required after transplant. Nicole has never given him any reason to believe this.  She takes her medication every day and has done all the testing that they have requested.  

There is also the issue of insurance… Nicole has Medicaid because she is on disability and it turns out that the transplant center doesn’t have authorization to do transplants for Medicaid patients something we were never told. The doctor also has a concern about her low platelet count but he had never brought it up before and he has seen her lab work.

I only wish that I had known about all of this issues prior to now  so we  could have avoided all of this crap. Back in August,  Nicole had  questioned him about a right heart cath he wanted her to have to see if she was indeed declining and then to decrease her medication and then three months later have another one. He took this questioning of hers as non-compliance just like us not getting a second opinion. The PH specialist had said that he has told the transplant center in no uncertain terms that it was not an option for Nicole not to be listed and he said “I don’t recall him ever saying this.” The PH specialist also said he had pressed him for things that Nicole could do to make this situation better which I questioned him about to and he refused to give us any concrete examples and kept side-stepping any questions that Rick, Nicole or I had.

Needless to say, we walked out of there with our heads spinning. The following day I called University of Florida and scheduled an appointment at their transplant center for a consult. I only wish that Nicole could get in before the end of Feb. 2014. I will pray that she stays healthy and stable until this time. I was also very troubled to hear the transplant center say that out of a hundred patients that come to them they will only accept 10 of them for  transplants.

It saddens me that this center has put Nicole and the rest of our family through a year of waiting and believing that they were the ones that were going to give her a new lease on life.  They have done nothing but deceive us by not telling us things that we should have been told.  I can't help but feel that it is partly my fault as I have questioned a lot of things and have been very vocal about her losing her cardiologist as well as the lack of communication between doctors.   It is hard for me to understand how they can believe that Nicole will be non-compliant when they see her every three months for 20 minutes or so nor have they made any attempt to get to know her as the doctor tried to state that he has.  

We have no idea what Nicole's current status at the transplant center is at this time.  The nurse was suppose to email me some letters from other centers and I have yet to receive this.  I feel bad that Nicole has to go through this because it is all about her .... this is her life and her health that is at stake.  

Random Thoughts

I'm not sure that this will be in any random order as my thoughts are so scattered with all the things happening with Nicole and her illness and also just with life in general.

The last time Nicole saw her PH specialist he referred us to an adult hematologist to try and  get some answers as to why her platelet count is consistently low and also her anemia issues even though she takes iron.  The hematologist did diagnosis her with ITP which is Idiopathic Thrombocytopenia Purpura.  Basically, this is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting.  Usually people with this have too few platelets in the blood.  There's either chronic or drug-induced... the doctor seems to think that Nicole's is drug-induced, I disagree, and while I am not a doctor, I do know Nicole better than they do.  Her platelet count was low at the date of diagnosis prior to medications which I absolutely believe have also contributed.  The doctor feels that having a bone marrow biopsy will help them in seeing how her bone marrow functions and whether the problem lies in the production of platelets or whether the problems lies after the bone marrow has spit them out. 

This was a complicated decision to make as to whether to actually put Nicole through this painful test.  One she has to be sedated (anxiety mostly) and this is extremely dangerous for a PH patient and secondly I don't want her to go through unnecessary testing and the final reason is one of her doctor's doesn't agree with having this test done.

Earlier this month, Nicole's cardiologist, who specializes in congenital heart defects and whose office  diagnosed her CHD and PH in 2010 stepped down as her doctor for a number of reasons from lack of communication between the doctor's to not agreeing with the treatment plan for transplant etc.  This was a very stressful situation.  I will do whatever I can to make sure doctors have better communication.  There is no reason that if a doctor is cc'd that they are not getting it isn't getting it.  As one of Nicole's doctor said they would probably have better communication if they were on facebook and did so. 

There were a lot of issues that needed to be addressed in regards to the bone marrow which didn't get addressed to my satisfaction so the procedure was cancelled at the last minute.  It has been rescheduled for next week and while I do feel better I still worry because most doctors do not have a clue about PH and how they are different when it comes to sedation.  I know she can have the procedure without sedation but I don't think her anxiety will allow this.  She was/is terrified of having this test which shows up for Nicole with major stomach issues. 

After Nicole's doctor stepped down I wrote an email to both her PH doctor and the transplant center basically letting them know of my displeasure over this whole issue.  Nicole had an appointment yesterday at the transplant center.  I am still trying to process and haven't listened to the recording of the appointment but the jest of it was.... we have to make a decision as to how to proceed.  The center has determined that Nicole needs a lung/heart transplant as opposed to a lung/heart repair.  If we decide to go to Mayo or University of Florida for a second opinion and they say they can do a lung/heart repair this center will not change their mind.  Tampa will not see Nicole because they do not do lung/heart.  The question is to we want to travel several hours away to have all the testing done again that she has already gone through to get a second opinion regardless of what that is. We know enough about transplant and the odds of living 10 years after a heart/lung are 35% but the chances that Nicole will be alive in 10 years with her illness now (PH) is less than that. 

My hope with the appointment yesterday was that we would get a recommendation for another pediatric cardiologist (she has to see pediatrics because they specialize in congenital heart defects). I didn't get this.  Basically, we were told if we decide to stay with this transplant center and proceed with transplant at the appropriate time that we don't need to replace the cardiologist.  I'm not sure I am comfortable with this.  The doctor basically said "well the PH specialist is a cardiologist... yes, this is true.... but he has no knowledge of CHD's as this isn't his specialty and he is an adult cardiologist.  The transplant doctor said that they have a cardiologist there and he wants us to see him (we haven't before).  So basically, the bottom line is we would see the doctor's at the transplant center and the PH specialist and that would be it outside of her rheumatologist, hematologist, ob-gyn, primary, and her psychiatrist. 

I guess at this point we will see the cardiologist and see what he says.  I will wait until after this time to really think about this.  My main goal for the next week is the bone marrow biopsy which her PH specialist wants her to have. We spoke on the phone at great length about this.  I would just feel a lot better if someone was there who was knowledgeable with PH like the doctor or his nurse etc. but since the specialist is at a different hospital than the procedure this won't happen.   I have the name of the doctor (who I have never heard of) doing the procedure but I don't know yet who the  anesthesiologist is at this point as on Wednesday when the appointment was made the lady who I have dealt with through this whole ordeal didn't have the schedule.  I'm sure aneshesiologist doesn't have a clue.  I asked if they had knowledge of PH but she said she could only assume that they did... not... this isn't a good thing (to assume).  This is the first time in almost four years since Nicole's diagnosis that she will have a procedure that requires sedation (she gets the same sedation every time to my knowledge) that her PH doctor hasn't done it/been present, his nurse hasn't been present, or the same doctor/anesthesiologist hasn't done the procedure.  This makes me so nervous and I would feel much, much better if there was a nurse or somebody present who was knowledgeable.

The stress and anxiety this puts on our  family is tremendous when I spend every moment of every day worrying about Nicole and her future as well as our future as a family.  It is exhausting with the phone calls, doctor appointments etc.  It is exhausting feeling like a total bitch because I have to ask 101 questions for everything and if I forget anything the consequences could be bad.  It is exhausting trying to fight a system that clearly doesn't work well when doctors and hospitals can't communicate especially in this day and age with electronic every thing from iPhone's to mini computer's.  Does me running my mouth trying to raise awareness about anything pertaining to Nicole and her illness do any good at the end of the day? 

I guess my biggest question/concern  is why does a 19 year old young lady have to make such life-changing decisions when she should be out having fun with friends, a boyfriend and looking forward to a future?  Instead, she has to make a decision as to whether or not she should have a lung/heart transplant, get a second opinion about that, and all the other decisions that need to be made in context to her health.   The future for her is so uncertain and while in reality it is for all of us because none of us know if we have a future or what is in store but for Nicole this hits hard.   The decisions that Nicole has to process would be hard for a mature adult let alone a teenager.  I will help her and support her with any decisions/issues pertaining to her health and I will be with her every step of the way on  this journey no matter what her/our future holds.  

Emotions...

Today is one of those days when a slap in the face from a test or a doctor's appointment can really throw me into a tailspin. 

I am forced to deal with emotions that I don't know how to deal with.  I will never forget January 22, 2010 when our life as we knew it changed forever with Nicole's diagnosis.  A diagnosis that we should have found out years before we did. 

For the first year and a half after her diagnosis I would wake up every morning believing that I had just had a nightmare and Nicole wasn't really sick with a incurable illness that she will either die from or require a lung/heart transplant for her to be cured of her lung/heart disease but still not have a normal healthy life free of endless doctor's appointments, medications,  etc.  Every morning the realization hit me that it wasn't a nightmare it was my life and it was Nicole's life. 

It has been a little over three and a half years now since her diagnosis and I don't wake up every morning thinking I had just a bad nightmare.   I also check to make sure Nicole is still breathing and then I say a  prayer for Nicole for the day that she will have a good day and we will have no major medical issues happen.  It is the last thing that I think about before I go to sleep at night with another prayer that she will get through the night without a pump malfunction etc. 

I know that this will sound very negative and I don't mean it as negative as it sounds... our life as been hell with Nicole's illness and other issues that we have faced because of her illness... I know things could be worse and I am truly, truly grateful for that.  We have had many blessings also to go along with the hell we have experienced. 

I looked back over the last three years and  know that if it wasn't for my faith and by the grace and mercy of God I wouldn't have made it this far.  I don't know how I will make it through a future that will see Nicole get sicker or a possible transplant.  I know that if God brings me to it He will get me through it ... but will I be stronger for it or will I lose my faith because I can't understand how any of this is working out for the good?  I know I am not the only mom who goes through this with sick children I am sure we all do.  For me, I don't know how to do this every day and stay positive, not be bitter,  resentful, angry at doctors/God/myself  etc.  I do make sure I journal three positives from the  day every night and so far today I  only have a great parking spot up front at Walmart.  Some days it is so hard to find those three things and maybe it really isn't as hard as I think it is. 

My greatest positive every single day is that I have blessed with Nicole and no amount of hell or hardship will take that away.  I am blessed that she is stable for the most part and that things could be so much worse.  I am still able to give her a hug and tell her how much I love her. 

Transitions ....

I was interviewed via video chat on Google hangouts on Friday, August 30th by Denise Brown at caregiving.com which is a blog site for family caregivers.  I have been involved in this community for 2 1/2 years.  It has been a godsend for me and I am grateful every single day for Denise and the other friends that I have made through the site.  They have helped me more than words can express.

The interview was about transitions with Nicole and her starting online college classes on Sept. 5th.  First, I am grateful that she isn't actually going off to college and I still have her living with us so that is a little better.  I didn't think that I would have this emptiness when my homeschooling duties were over I thought I would only have relief but two months into what would be our school year I realize that I really do miss it and wonder how do I fill this gap. 

Life for Nicole and our family is different for a family with a healthy child who is going to college.  There are a lot of other responsibilities.  I am responsible for Nicole's medical issues as her power of attorney because she is 18 and considered an adult so in order for her not to have all those burdens Nicole had to give me this authority.  I am also responsible for her financial matters and her representative payee for her disability checks which I have to be accountable for.  I think of myself as Nicole secretary or administrative assistant.  I know what she expects from me and I try very hard to respect those boundaries.  I do not ask her (or try not too... this is a work in progress) if she needs help with something... if she does... she must ask for it.  I know this is hard for her because she doesn't want to depend on me and have to ask others to help her. 

I always feel the need that I must explain myself as to why I am so overprotective of Nicole even though she will be 19 in less than three weeks (wow... where does the time go?)  It is hard for people to understand if they don't have experience with this situation.  How much should I still push Nicole?  I ask this question with college... she had orientation last week and I was so proud that she had finished it and scheduled a conference call with one of her instructors (she's taking two classes).  I didn't know she had scheduled this until the phone rang and I saw Nicole on the phone.  I mouthed to her to let the instructor know about her medical issues.  She didn't need to go into detail only that it had a potential to influence her schoolwork.  After the call I asked her if she told the teacher and she said "no" because the call was being recorded for the other students.  She said she would PM the teacher.  This was last Thursday.  I asked her last night if she had done this and she said "no".  She also has an assignment that is due prior to tomorrow.... she either had to make her weekly schedule or take a picture of  her desk/work space.  She didn't want to do her weekly schedule,   this would allow her classmates to know she is ill.  I don't understand why she feels compelled to keep this a secret or is ashamed of this but I have to respect this.  She also thinks her life is boring.  She decided that she was going to take a picture of her desk area.  The problem is her desk was a mess.  She asked me to help her get it organized which of course I said I would do.  I make her take everything off her desk but her computer.  I have asked her numerous times what she needs on her desk and she says she doesn't know.  I am a little upset that she asks me to help her but when I do try she blows me off... I guess this is my problem... As of last night she still hasn't completed this assignment.  The way her classes work is she has a module to complete in each class every week which runs from Monday to Sunday.  The modules consist of  reading, an assignment of some type and then a discussion.  I need to find a balance of not hovering but still knowing that she is getting the work done without her getting behind or overwhelmed.  I thought this morning as I was thinking about this blog that I would touch base with her on Friday's to see what her assignment was and if she has completed what needed to be done.  If not, I have Saturday to make sure she gets it done.  The rest of the time I will need to step back unless she comes to me.   This will be very hard for me to do. 

Ever since Nicole graduated I feel like I am just floated a long with no place to go so to speak.  I have devoted so much time to Nicole's schooling and her medical issues that I haven't had much time to focus on myself and what I want for myself.  I know even with Nicole's illness that within a few years she will want to be on her own and move on with her life.  I need to have something that fulfills me.  Yes, I have goals like to declutter and organize my house which I have been working on.  I would also like to shed some pounds and get into a healthier lifestyle.  I would like to continue to learn about pharmacology and at some point get certified as a pharmacy tech but I don't think that I can work outside of the home and still focus on Nicole's medical issues at this point in time.   I do try to save money where ever possible and make a few bucks here and there when the opportunity arises.  I would love to find something from home for a more consistent income.  I want to continue to learn and grow into the person I know I can be.  I have been very interested in herbs and herbal/homeopathic medicine for quite a few years and would like to learn more about this and how it applies to keeping  Rick and I healthier.  I would also like to learn how nutrition can be a benefit to Nicole and her health.  I would also like to takes some self-help classes that pertain to organization/decluttering.  I still don't feel like I have a clear picture of this though.  I would also like to improve my relationship with God and really learn to trust him with Nicole and her health issues and trust that whatever happens that it is for the best.  I can't spend my days wondering why she has had to go through what she has and why we had to wait so long for a diagnosis.   I want to be more true to myself... be more like Jesus and love others more than I do... be a light and inspiration for Nicole, Rick and the rest of my family and just forget about what others think.  I want to be at peace within myself when it comes to Nicole's health and the journey that we are on with this even though this isn't the life I had hoped for Nicole or our family.  I want to help others who live with the disease or any other illness that impacts a persons life.  I also want to be support for other caregivers.  I feel like this is too much to want and how do I go about getting this all.   It is overwhelming to me sometimes as I have to remember one step at a time....

Transplant Appointment ....

Today, Nicole had an appointment at the transplant center.  I am always a little nervous to go to any doctor's appointment whether it is the cardiologist, PH specialist or the transplant center as they could rock our world by telling us that Nicole's disease has progressed or that she is in congestive heart failure.  None of these I want to hear. 

I tend to get complacent when things are going on an even keel.  She has had a very good site this time and today is day 32 even though she will probably have one to welcome the long Labor weekend and the start of college classes for her which really sucks especially since her birthday is three weeks from Labor Day.  Sometimes I don't keep a detailed record of things like I should.  This is where  I help Nicole the most is in the note keeping and the organization of records and making the calls and appointments and keeping track of them.  I get complacent not in the thinking that she isn't ill anymore but in the thinking that it isn't that bad.  It really does take a doctor's appointment that I think is going to be nothing but routine to slap me back into reality... the reality that Nicole has a life-threatening illness that as of this date has no cure. 

We got to the appointment and they were out of decaf coffee... that should have been my first clue that things weren't going to go as I expected :).  They did the usual things, weight, height, how are you, what have you been up to, when does school start, go through her list of medications.  They switched her over from her portable oxygen to their tanks and took her vitals.  The social worker came by and stuck her head in.  She is pregnant with her first child so we said congratulations.  Another nurse, stuck her head in and said get Nicole ready for the SHAPE test.  She had this the last time she was at the transplant center.  It is not Nicole's favorite test.  Basically, she is hooked up to a heart monitor and has a pulse ox on her finger.  They take her off the oxygen and clip her nose and then have her put a tube in her mouth that basically catches her saliva and spit.  She then has to step up and down on this step for five minutes while the computer records her vitals.  Her oxygen saturation levels dropped to 60 and I know her heart rate got at least 130 but I don't know how high it went.  The doctor kept coming in and out while she was doing this.  At one point she was asked if she could go faster and she shook her head no.  The nurse finally told her to stop at about 4 mins. and 30 secs.  which was longer than she went last time before the doctor made her stop.  I thought she did very well except her breathing was very heavy and I could tell she was struggling.  They gave her back her oxygen and she sat down.  They unhooked her and we went back into the exam room. 

The doctor came in a few minutes later and said this test was much worse than her last one which I believe was in May.  I was surprised.   He said that he was going to tell us that he didn't need to see her so often as she was doing so well but he couldn't do that now because of the results of the SHAPE test.  He wants her to do another 6MW, hopefully tomorrow, at rehab to compare that with the last one.  It sounds to me like he wasn't happy that her heart seems to be working harder.  He is not sure if she is declining or if her dose of Remodulin is too high.  I remember her PH doctor saying that they had to really be careful because if the dosage was too high it could do more harm than good. The transplant doctor said the same thing today.    They may have to back her down.  He also mentioned another heart cath.  Nicole usually doesn't talk much at appointments but at this point she did.  She doesn't want to go through another heart cath unless it is absolutely necessary (I don't blame her).  He called her PH doctor while we were there but left the room so I don't know what was said only that the doctor would be contacting us.  

During Nicole's last heart cath in January she had an allergic reaction to something they gave her in the cath lab.  The doctor who does her heart caths always makes her spend the night in the hospital.  When we were allowed to see her I noticed a red line that went from her IV up her arm.  I questioned the nurse and she said it was much better than it was and she had two doctor's look at it and they didn't seem concerned enough to give her anything.  The next day she had a rash on both arms and Nicole's cardiology nurse said that this meant it was systemic and that it could be worse next time causing her to go into shock.  I don't want her having a heart cath until this is addressed either by figuring out what she has an allergy too or a plan to combat any reaction either with Benedryl, EPI pen etc. 

So right now the plan is to get the 6MW which the doctor will compare to the last one.  At that point, he will make a decision how he wants to proceed.  I suspect that she will see the PH doctor soon to discuss lowering her dosage of Remodulin. 

This really freaks me out... I don't usually think too much about how sick Nicole really is as I would be a basket case all the time.  I am not ready to deal with a transplant yet and I know the doctor wanted to prolong it as long as possible also.  I can deal with the stability she has now even though we have rehab, medication, and everything Nicole goes through in her daily life with side effects, fatigue etc., but if I think about how sick she could be and will have to be before, during and potentially after transplant I can't deal with this.  I know if God brings me to this He will get me through this but I'm still not ready. 

I always hate these appointments as they always send me into a tail spin and I can tend to feel sorry for myself and for Nicole and her life and why does she have to go through this.... why does God allow her to go through this when He could heal her... you know how that is... I will also shut down and not want to focus on things that I should... heck, I do that now.  If I spent as much time cleaning and decluttering my house as I do on facebook, checking email, any other distraction my house would be clean and decluttered and I would have time to do this that interest me without guilt etc.   I envy Nicole because at least she deals with her emotions where as I tend to use distractions of any kind to keep from dealing with them because I can't.  This is why I hate it when people tell me I'm so strong because I'm really not....I don't want my daughter to be chronically ill, I don't want my daughter to die and I want a normal life without doctors, hospitals, medications, side effects, pain, emotion, anxiety etc.  I don't want Nicole to be ruled by the oxygen concentrator, by not being able to just get up and go do something fun without any planning or preparation.  I want her to be a normal teenager but it comes down to the simple fact is she isn't because of her illness.

Random thoughts....

This is just a update so to speak.  I took Nicole to the psychiatrist on Monday because of her emotional issues last week with things she said that were of a concern as well as her sadness that she has had for months.   My whole purpose for this appointment was to have the doctor increase her dose of anxiety medication.  He did do so and also added a diagnosis of ADHD.  As of yesterday, she started the new dosage.  It will probably take about two weeks for the medicine to kick in.  He also made sure to tell her that the medication alone wouldn't make her happier she also had to be more positive and change her mindset. 

Yesterday, she saw the counselor.  Sometimes Nicole talks to Pat herself and sometimes it is both of us.  She didn't want me to leave yesterday.  I explained what has happened the last week.  It never ceases to amaze me what I have learned from Nicole and continue to learn from Nicole about myself.  One of Nicole's issues is her trying to use other people to make her happy and feel valuable and worthy.  She is very attached to Shayne, more so than she should be, and she is happy/sad based on what is going on in their relationship.  She is like this with her other friends but she is closest to Shayne so it is more prominent with him or me.  I don't know when she became so afraid of being alone and being by herself when all her friends are at work.  I know it is difficult for her to come to terms with the fact that her friends are all starting to enter the workforce and this is something she can't do.  If I had to really pinpoint the start of her sadness/depression I would say it was right after she was told when the time comes for transplant she will need a lung/heart.  I know she has read about the surgery and she knows the odds and risks of the surgery as well as the rarity of it.  How could you not be terrified.  I am terrified and have not come to terms with it by any means.  My friend, Denise, has told me for a long time that every night I should write down three positives things that I am grateful for in my day.  I had kept a gratitude journal for years but I had gotten out of the habit of it and I could tell.  I decided that every night when I ask Nicole her daily questions about her day,  her side effects, medication issues etc.  she would give me three positives in which I write down in a little notebook.  Last night every positive she gave me was followed by turning it into something negative for example one positive was Shayne had the day off from work which is a positive but she took it over to the negative when she went farther and said yea... but we aren't doing anything... isn't just him being there with you on skype (via microphone) enough... I guess she feels they have to be doing something in order for her to believe that he wants to spend time with her etc.  Tonight she needs to give me three positives and that is it with no further negativity.  It also troubled me as I have battled this demon myself that nothing ... no matter what it was ... is good enough... always thinking  that there's something better.  

I had asked her to write down all the positive attributes about herself.  I told her it should be on my desk this morning.  It was and I was very sad to see that there were only eight things on the list.  These included a good artist; a good imagination; she's pretty; beautiful eyes; she was strong; she likes the two little moles on her face; she loves her friends, pets and family a lot; she's creative.  I immediately within 5 minutes was able to write down these other things:  loyalty; intelligence; a caring heart; a love for children; a love for animals; beautiful smile; beautiful hair; thin; good photographer; brave; a good writer; kind; not materialistic; good student.  Tonight I am going to have her write down the negative things she sees in herself and if I had to bet it will probably be twice as long.   I think the number one answer will be selfishness. 

I learned yesterday that I have this same type of attachment in a lot of ways with Nicole as she does with Shayne.  I was never one of those moms (and if you are I'm not criticizing or judging) who couldn't wait for the first day of school.  I hated the school year because I had the whole day without Nicole.  This applied if she was going somewhere .... what would I do without her.  Now, she is 18 and she doesn't need me like she did when she was younger and soon she will want to be married etc.  I sometimes don't know how to be happy without her with me.   I have been thinking a lot about something my mom said to me, I believe it was the day she was diagnosed with terminal lung cancer and she was refusing treatment... she said "you don't need me anymore"  ... I lived in Florida she lived in New York.  I couldn't understand how she could say that ... I would always need her... now I understand more what she means.  

I hope that I will see that beautiful smile and hear that beautiful laugh come back soon.  She doesn't realize how much, even though I have tried to tell her, she has influenced me and a lot of other people.  She has inspired me in so many ways.  She has made me a better person.   She is what I am most grateful for every single day.  That God has blessed me with another day with her even through all the sickness, depression and pain it doesn't even come close to a life without her in it. 

Is There Such A Thing As Normal?

I came across a little harsh last night in my stauts on Facebook.... I absolutely agree with what I said though. I want people to look past her illness, the oxygen in her nose, the sadness she has, etc. and see her heart something that this society doesn't do.  I want her to be treated as normal but at the same time she isn't normal and she does have some hefty limitations and baggage.   Find a way to show compassion and support. 

 This is the issue with Nicole... someone (I will use myself as an example) can make a statement to her and she will interpret what I said... for example, I say to her " I am happy today and you are sad and I am not going to allow you to make me sad so when you want to be happy let me know and we can hang out. "   Now, for one... nobody can or should be able to make you feel sad/happy etc. unless you allow them too (unfortunately, Nicole hasn't learned how to do this).  This is what Nicole hears from this... "you are a downer and I don't want to be with you unless you are happy."  She feels like I am putting conditions on whether or not I want to spend time with her.   I'm not saying it is a totally wrong interpretation.  When Nicole talks to me I have to clarify is this actually what the person said or what you think they said?   If it is in the form of a message (text, skype, IM etc) I will have her show it to me.  I have to try to help her take only the words that was said and not what she interprets them to mean. 

Nicole had a very emotional week last week.  On Friday, because of her sadness and depression I called her psychiatrist and scheduled another appointment for her to see him today.  Nicole has been on the same dose of her anxiety/depression medication since she was 10.  Earlier this year her dosage was increased because of depression which I believe stems from being told that she needs a heart/lung transplant but at this point you are too stable and we can't list you.  I know she said she assumed that she would need the lung/heart but still when you actually hear it and it's a reality it's different.  I also feel that she doesn't feel like she is good enough to have a serious relationship with a guy, to eventually get married, etc. Why would some guy want a relationship with her when they can have a relationship with a healthy girl who can do all the things that she can't.   She is at that age where these thoughts come into play.  On July 3rd she saw her psychiatrist and once again I asked for an increase in her medication because of anxiety and her depression.  I do know that based on her weight her dosage could still be doubled.  Nicole  takes (on a daily basis) 16 pills each day and that doesn't include vitamins.  She also takes other meds like Immodium AD on almost a daily basis for diarrhea which is a side effect of the Remodulin.   She also takes narcotics with every site change as well as nausea medication which is also a side effect.   I fill her weekly pill containers on Sunday evenings.  It occurred to me that I could have not given her enough anxiety meds.  She was taking a pill and a half every day but when she was at the doctor last he upped it and so she was going to switch to just one pill because of the higher dose.  He electronically submitted the script and Medicaid will allow for the immediate filling of a script if the dosage is different.  I picked up the script a few days later and started using this.  Last week and I believe the week before I was using the old prescription and just giving her two pills.  It occurred to me last night that I couldn't remember if I gave her two pills or not last week.  If I didn't this would explain Nicole's behavior.  I know I gave her two pills this week.  I asked Nicole if she paid attention and she said no.  I would feel horrible if  my mistake was the reason for this emotion.   When I filled her weekly vitamin container I wrote with a sharpie on the top how many pills she takes daily for instance she takes two Vitamin D's so I wrote 2 pills.  I will do this same thing with her prescription meds. 

I will also need to call the gynecologist again as Nicole is still having female issues and the doubling of the hormone hasn't stopped the problem.  She was actually having cramps over the weekend.  She sees the doctor in the middle of September.  They are going to have to call in another script for 2 pills every day so Medicaid will fill the script because I will run out two weeks prior to being able to fill it.  This would mean I will have to pay $65 for a month supply of it which I realize in the context of some of her other meds is cheap. 

She will see her counselor tomorrow after rehab.  I hope that this will help her.  She has to find a way to find happiness within herself and not rely on others to make her feel this way.  She has to find value and purpose (which she doesn't have) within herself and to know that she is normal but just was given a disease that she did nothing to deserve.   I know how hard this is.  She doesn't understand why she's sad and if she could just figure that out then she could do something about it.  If I have too I will take her to the counselor every week but this another expense I have to pay out of my pocket because as her counselor says "she doesn't have the right letters behind her name so Medicaid doesn't acknowledge her.  I really don't mind paying if this is what Nicole needs though.  She is currently seeing her every other week which I increased a few months ago from once a month. 

I want Nicole to see how beautiful, smart and talented she is.  She thinks everything she feels/thinks isn't normal when I tell her all the time it is.  She has the most beautiful heart and I always say she has more loyalty that a dog.