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. 

Learning Something New About Myself....

I believe in 2009 around the time of my carcinoma in-situ diagnosis  God put  into my heart to "get my house in order".  I'm sure a lot of us will feel like we are being called to do something and ignore that .... I know I did and still do.  It has been four years and I still do not "have my house in order".  My number one goal for 2013 was to clean out the clutter and get my house organized.  I have done bootcamps, organizing calls, watched organizing video's ... you name it to try to figure out how to accomplish this... I realized that it doesn't matter how much I listen to or watch if I don't do the steps then it will not get done and there's no housecleaning fairy that comes in and cleans out the clutter every night while I sleep... I really do wish there was.   My issue is making decisions on what to do with stuff.  I have made decisions pertaining to Nicole and her illness without a problem or any other decisions I need to but when it comes to whether I should keep, trash, or give away I have a problem. 

The most important thing for me to get organized was all of Nicole's medical records and paperwork which for the most part was in a wicker trunk.  Starting in January every morning for 30 mins. right after I watched Joyce Meyer I would go through the trunk and organize the paperwork that eventually made it in binders.  I have about 20 binders that range from hospital records, labwork, SSI, insurance, prescriptions, and then one for every current doctor she has and then one binder for all her past doctor's.  This project took me roughly 6 weeks or so.  I have continued to work 30 minutes every morning on keeping all of Nicole's medical documents, etc. organized... there's always work to be done.  That wicker trunk is now used to store yarn for crocheting.

The worst rooms in my house are the spare room and the living room which we really don't use on a regular basis.  I believe in May or June I converted the spare room to my "home office" with my desk etc. and let Nicole take over the computer/homeschool  room so she could have more privacy and more space to get organization for her art supplies etc. 

I started on a daily basis trying to spend 30 minutes in the living room doing some type of decluttering and I am amazed at the amount of things I have given to my friend, Margaret, for her yard sale, goodwill and thrown away and I look at all I still have and can't understand how I accumulated so much stuff.  I'm not where I want to be in here but it's looking better that it has in the past.  I am still embarrassed to have people come over though and see it. 

I realized though that my first priority must be the spare room as this is where all the medical binders are, the file cabinets and all the paper that comes in to our house and this is where I waste the most time looking for things.  I try to spend 60 minutes on Mon., Wed., and Fri. decluttering.  On Wednesday of this week I started concentrating in here.  I had converted the closet into shelves several years ago so I was able to clean them all off and have a purpose for each shelf.    It is too hard for me to squeeze in this time on Tues. and Thurs. when Nicole is at pulmonary rehab or has doctor's appointments so I double up on the other days. 

Last week I went through all my cross-stitch and latch hook projects that I have that were in the living room.  I haven't worked on them in a long while but I am not ready to give them up so I decided to put them in drawer organizers.  I had a couple already around the house that I could use and then bought another one yesterday when they were on sale at Target.  It looks a lot better in that area now.  All that's left is to label the drawers.  I also have all of Nicole's homeschool schoolwork that needs to be organized/thrown away and anything that I don't need in the spare room/home office finds a home out there temporarily.  

I have the a pretty good collection of photo boxes that you can get at Michael's that I accumulated over the years.  I had a bunch of these on the bookcase in the dinning room that had pens, highlighters, pencils, and post it notes in them.  I knew I had some clear containers and decided this morning to transfer them into clear containers.... this is where I learned something about myself... I need to store stuff in clear containers so I know what I have.  I have enough of pens, pencils, and highlighters to last me for years and years.  I don't have as many post it notes as I thought which was a surprise to me but I have another little decorative box as well as a desk drawer or two with more so all together I probably have a good collection. 

I hope that I will repurpose these boxes and use them for other things like keepsakes, pictures etc.  and store on the bookcase in the living room at some point. 

I feel so good about myself and my goal of cleaning out the clutter when I get some area even if it's my dining room table cleaned and organized but I get frustrated at the same time because I have a hard time realizing and visualizing that at some point it will be done .... even though that can' t come soon enough. 

As Joyce Meyer always says "I'm not where I need to be ... but I'm not where I use to be."   I need to focus more on how far I have come and not how far I still have to go. 

A Character Sketch...

I have been going through Nicole's old schoolwork as I had a huge hope chest full of all her books, papers etc. from 6th grade on.  I only need to keep from 10th on in case the county comes back and questions me.

I found this character sketch she did for an assignment in 10th grade English.  This character sketch is of me and this is what she wrote:

Jane Northrop is an awesome person.

She has shoulder-length dark brown hair that is usually in a ponytail.

She wears neutral-colored makeup and carries a big purse whenever she goes out.  She has dark brown eyes and wears glasses for her nearsightedness.  Her typical outfit is either jeans or capris and a t-shirt.  She usually wears sneakers even when she is doing things around the house.  She usually wears a cross necklace and a bracelet and earrings.  She is usually wearing something that spreads awareness about pulmonary hypertension whether it is a t-shirt, bracelet or button.

She tends to complain about her situations a lot.  She tends to be a bit impatient but not more than an average person is.

She has a melancholic type personality.  Generally, she reacts to change somewhat badly, not liking it at all, but she is very strong and takes the change head on.  However, she is usually stressed out about something whether it's because of what she has to do or because of other people.  She usually has a bit of a negative attitude, but she tries her hardest to have a positive attitude.

She tends to judge others easily, especially when she feels they have wronged her.  She tends to get upset at others, especially when they did something she feels they shouldn't have done.

Everybody believe s that she is a very kind person with a very godly heart.  They also think she's organized and very strong emotionally.

She is typically at home with me, stressing out about what she has to do.  She procrastinates a lot, though,  and is usually found on the computer checking Facebook.

She tends to agree to do a lot of things, and that causes her to stress.  She is a very devoted Christian and spends time every day on several devotions.  She is also very devoted to helping me with my medical illness. She is very loyal to her family and friends and will try and help them if they need.  She is an organized person, even though she doesn't see it because she can never find anything. 

I'm not sure if this is the end of it or I'm just missing the second page....

Venting....

This is just going to be a rant because of frustration and not knowing what to do about it. 

I absolutely LOVE Nicole's PH doctor.  When she sees him he makes her feel like she is his only patient.  The problem I have is all the other times I have to deal with his office. 

The transplant center requested a new echo back in May  and since Nicole was seeing the PH doc the following week I thought this would be easy to get it done at his office.  Well, you know what they say about the best laid plans.... he decided that he wanted it done at the hospital (not the same hospital as the transplant center is through) because there machine was better.  We finally got it scheduled for June 20th.   I still don't know the results of the echo nor has the transplant center gotten a copy of it. I emailed the PH nurse the first time on July 2nd.  She responded on July 9th as she had been on vacation.  She told the doctor that I had requested the results.  Test results should be reviewed with the patient before the reports are released (I'm not sure if this is his policy or she was saying this).  She said the doctor wanted a phone conference with me and asked when would be a good time between the 9th and 12th.  I said either early Friday morning prior to 9:00 a.m. or anytime after 4:00 p.m.  On the 10th  I told her Nicole had her metabolic panel bloodwork done on July 2nd and wanted a copy of that.  She did reply to this that the doctor would call on the 12th at 6:00 p.m.  Never addressed the blood work.  The doctor never called me for whatever reason. 

I got a call from the transplant center on Monday asking if I had the results of the echo.  I  sent an email to the transplant nurse that I didn't have the results and that they may have better luck getting them then I have.  I also said that in the future whenever Nicole needs an echo I will have it done through her cardiologist.  They will get it to the transplant center and to me  in a timely manner.  This problem taken care of. 

Nicole has monthly blood work for a complete blood count (this lets us see her red blood count as well as her platelet count which is always low) as well as a liver function test as one of her medications can cause liver damage, a pregnancy test (regardless of sexual activity) as this same medication that can harm the liver will cause serious birth defects so can't be taken if there's a chance of pregnancy, a metabolic panel which among other things checks the potassium (this is usually low for Nicole) and a magnesium count.  She has a standing order through the PH doctor for the metabolic panel and magnesium testing and the CBC, liver, and pregnancy is through the cardiologist.  The hospital faxes the results to each doctor that requested it.  I emailed the cardiology nurse asking if  the doctor would write a script for all of the standing orders together and he would get the results because I know I will get them in a timely manner.  I am waiting to receive this script in the mail.  This problem taken care of. 

The last issue that I have and this is where I am frustrated as how to handle this.  Nicole is on subcutaneous Remodulin which means that she has a tiny little catheter in her skin that is attached to an infusion pump that delivers the medication.  On average every five weeks the catheter needs to be taken out and a new catheter put in at a different location (abdomen, thigh, arm, buttocks).  When she initially puts in the site she has extreme pain for about 10 days during which time she has to take Hydrocodone.

Nicole had a site change on June 26th in the hopes it wouldn't interfere with her Make-a-Wish.  She actually put it in dry on June 24th but that day and overnight it started bleeding so Nicole had to take it out and stick herself again.  I'm not sure if she got too close to the old site on her thigh or what but she got this really bad rash that seemed to spread from her old site to her new site.  Bottom line was she had discharge and when Nicole went to take off the gauze that covers the catheter it stuck and Nicole had a hard time getting it off without pulling out the catheter. After texting a picture of Nicole's thigh and speaking with the Accredo nurse she said the site was angry and that Nicole would have to change it that day which was July 10th two weeks after the last site change. This same day July 10th I sent an email to the PH nurse that Nicole had to have a site change and that I wasn't sure if she would have enough pain meds to last for this site change and I would like another script. Previous to this, right before this site change I had asked for another script before the doctor went on vacation I never received the script that I requested nor did I receive one the time before when I asked for it but was just ignored.   Only the doctor can write a script for narcotics and it must be mailed or picked up and taken to the pharmacy.  She said she would have the doctor write it on July 11th and she asked me if I was going to pick it up.  I said "no" just get it in the mail to me on Thursday and I will have on Friday and I can fill on Saturday.  As of yesterday which was the 16th I still haven't received the script.  I ask you... if he puts her on a medication that causes extreme pain where she has to take narcotics than he better make sure that I get the scripts when they are needed and in a timely manner.  This isn't the first time I have had problems getting pain meds. 

Initially Nicole was on Tylenol/Codeine which she had some reactions to... nausea and dizziness.  When Nicole was in the hospital in January they gave her Hydrocodone and she did much better on it.  I asked for a script of it on discharge but didn't get it so when she saw him for follow up ten days later I got a script.  The doctor wrote it wrong ... hydrocodone has to be mixed with acetaminophen or ibuprofen and he didn't realize this and just wrote it for straight hydrocodone because you use to be able to get it like this.  She had a site change and I went to fill it and couldn't.  I was livid and called the doctor's office and talked to one of his NP's and he said that he would get it out to me ASAP... it was put on someone else's desk to get mailed out and I didn't get for at least a week.  During this time Nicole was forced to take the Tylenol/Codeine.   I can't control what other people do or don't  do only what I do... I emailed the cardiology nurse to see if the cardiologist would be willing to prescribe the narcotic and he doesn't have any patients who take pain meds so he won't do it (at least I tried).  I shouldn't have to fight every time I need a script to get it.  The only options that I see is that I either find a new PH doctor or I get more than one script every 3-4 months when she sees him but I don't think this will work because of the strict laws of narcotics.  The only other solution I see is that I will have to travel down to his office which is about 25 minutes from my house if the traffic is good and pick up a script every time.   I also could email the doctor personally and let him know of my frustrations.  Fortunately, Nicole will have enough pain meds to last through this site change I believe but I think she has not taken them as much as she should because she was afraid she would run out and just tolerated the pain.  She thinks I don't know when she is in pain and how bad it really is. 

Nicole's Make-a-Wish trip

Nicole had her make-a-wish trip this past week.   If you aren’t familiar with this organization they grant wishes to children up to 18 years old with life-threatening illnesses. 

I nominated Nicole when she was about 16 ½ .  She didn’t want to do it because she didn’t know what  her  wishes were.  The wish child has to pick their top three wishes .  Initially, her wishes were to go to Alaska,  tuition for college, and professional camera equipment in that order.  Two volunteers came to our house to talk with Nicole and I had to fill out paperwork as she was a minor. 

I believed after this meeting I got a letter saying that the volunteer didn’t think that Nicole really knew what she wanted and when she did to contact them. Nicole didn’t seem to  interested so I let it go.   I eventually got a letter saying if she didn’t pursue her wish than her file would be closed which by this time she was almost or had just turned 18.  I contacted them and said that Nicole wanted  to pursue her wish.  Nicole spoke with a volunteer over the phone. Her wishes had changed because she had gotten the camera equipment so that was taken off.  Her wishes now were meeting her online friend Shayne, college tuition and Alaska.  The volunteer on the phone told her she didn’t think they would fulfill her first wish.  

The volunteer called in January 2013 when Nicole was in the hospital.  I accidentally deleted her number and after a couple of months without her calling again I emailed the last person I had had contact with at make-a-wish.  A week or two later, I heard from Christina the make-a-wish coordinator.  

She apologized for the volunteer telling Nicole this as well as telling me that she wouldn’t speak with me because Nicole wasn’t a minor anymore.   Christina dealt with me during the whole process without a problem.  Christina said if Nicole’s wish was approved it would be the first time that they had fulfilled a wish like this.  

For every wish, the recipient’s doctor has to approve it. Nicole’s cardiologist approved the wish so the next step was to find out if Shayne wanted to be part of Nicole’s wish… which he did.  At  this time it was up to Nicole to pick the date.  

Christina and I spoke and emailed quite a bit for the next couple of months to get the wish all set up.  

Tuesday, July 9^th

This was the big day.  I don’t think either Shayne or Nicole slept much the night before.  Shayne was picked up by a car at his home in Maine at 5:30 a.m. for a 7:30 a.m. flight from Bangor to Washington D.C.  I had asked his mom to ask him to text me when he got to the airport in Bangor and D.C. so I knew he was okay and if Nicole asked I could let her know.  Shayne has never flown before except in a glider with his dad.  

A car picked Nicole and I up at our home at 1:00 p.m.   Shayne’s flight was scheduled to land at Orlando International Airport (OIA) at 1:53 p.m.  It is about a 45 minute drive from our house to the Ritz-Carlton hotel at Grande Lakes in Orlando.  Rick was following behind us as at the time of planning the trip he didn’t know if he would be able to get the day off.  

We got to the hotel about 15 minutes before Shayne was scheduled to land.  The oxygen arrived at the about the same time.  It was my understanding and I thought I had made it clear to the oxygen company that the portable tanks needed to be the smaller one’s because Nicole  would be in a wheelchair and they needed to be able to be in a bag and hung to the wheelchair.  What we got was the normal size tanks  which wasn’t going to do us any good so we would use the portable concentrator.  

The plan was to meet Shayne  in a lounge area of the hotel.  Our rooms were ready when we arrived so we went up to check them out.  There were flowers for me from the staff.  Nicole had an edible arrangement.  There were also three Ritz-Carlton bags with three pink hats.   I think they thought Shayne was a girl … they did exchange it for a blue hat.   There was also a big basket of chocolates and chips etc.  While we were in our room an employee came to the door.  I asked him if I could take the stuff out of the fridge without being charged for it.  He said it wasn’t a cold storage and if I needed a fridge I could rent it for $15 a day.  I had brought a bunch of water and some yogurt and Gatorade  and  Nicole’s Remodulin is kept in the refrigerator.  I told him I would think about it.  Shayne had texted Nicole that he was on his way.  We went downstairs to find the lounge area and was walking along the lobby when Shayne came up to us from the side.  He gave Nicole a big hug… I had planned that I would video tape their initial meeting … well, this didn’t happen.  All I got was a fuzzy picture of  them hugging which I had to make sure they said in that pose until I got my phone out of my pocket.   Rick had been outside  and came in to meet Shayne.  A hotel worker took pictures of us with my phone.  I decided to rent the refrigerator and  went to the front desk.  I told them I would like a refrigerator.  They said if it was for medicine they waived the rental charge. 

We then went up to our room.  It was two rooms that were connected by a living room type area.   We hung out for a while.  Nicole had to decide when to do her pump change before or after dinner.  We decided to do it before.  We then left to go to dinner at Chili’s which is Shayne’s favorite restaurant. 

 

When we came back to the hotel Rick went home for the evening but said he would be back on Wednesday to take part in Nicole’s surprise.  I believe that Nicole and Shayne played a game. 

Nicole had decided a few weeks ago that she wanted a new desktop computer to replace her Mac laptop as she couldn’t do what she wanted on it.  Shayne is gifted with computers and has built his own along with helping friends and family build their own too.  Shayne told Nicole what to buy.  Nicole had decided to bring it all to the hotel so they could put it together instead of waiting until Friday when Shayne would be coming to our house for a few hours.  This was Nicole’s first major purchase she has made with her own money.  

About the time I was ready to go to bed Nicole and Shayne came out of the room and decided to start putting the computer together on the floor in the living room.  I went into our room and shut the door.  A little while later I heard banging and thought it was from another room so I went back to sleep.  Later, I heard the banging again and this time I got up and looked out the window and then opened the door to the living room and Nicole was standing there glaring at me.  It turns out there was no knob for the door on that side.  Nicole had tried to get in our room with the room key but the latch was across and so she couldn’t  open the door.  I felt so bad… needless to say I didn’t close the door all the way again.

Wednesday, July 10^th

Today was the surprise day that I had asked for.  Nicole and Shayne had no clue where we were going.  All they knew is we were being picked up at 11:30 a.m.  Nicole has had a bad rash on her thigh where her old site had been which I guess had spread to her new site which was over a few inches.  I don’t remember why Nicole went to change her dressing but when she went to take it off the gauze stuck to the catheter and started to pull it up.  Nicole was able to keep it down and still get the gauze off.  I contacted the Accredo nurse by emailing her a picture of the rash as my phone wouldn’t text message a picture.   She said that the site looked angry and that it needed to be changed sometime today.   Nicole was very upset.  This was her worst fear that her wish would be ruined by a site change and Shayne would see her at her worst.  With both Shayne and  I consoling her I finally got her to get up to start getting ready.  We would change it after the surprise.  She came out of the bathroom a few minutes later holding the catheter as it had fallen out which meant at 11:00 a.m. we had to put in a new site.  Nicole did this quickly, usually she has a hard time getting ready to stick herself  but she didn’t have the time to do this today.   I asked Rick if he would go down to the lobby and tell the driver that we had had a medical issue and we would be down as quickly as possible.   We came downstairs and walked out of the lobby to see a limo waiting for us. 

 I was afraid the driver, Wade, was going to give away the surprise when he asked if we wanted to go to lunch before or after we went to the Florida Mall.  It was decided that we would wait .  When we arrived at the mall the driver got out Nicole’s wheelchair that he had up front with him and  Shayne helped Nicole get everything situated.  A crowd started checking out the limo probably thought there was a celebrity.  Rick had gone into the mall to find a map to see how to get to our destination.  At the same time, the driver was on his phone looking where to go also.  The driver gave us his card and told us to call him when we were done.   

Shayne was pushing Nicole and I asked her if she knew why we were here and she said  “I think so”.   The mall is huge and we finally arrived at Build a Bear.  They brought out a bag for Nicole which had the two my little ponies that they had saved for her Pinkie Pie and Rainbow Dash.  Nicole had gotten the last Pinkie Pie.  It was so much fun.  They made the stuffed animals and then picked out and tried on outfits.  Nicole bought a small fry turtle for herself and for Shayne and an outfit for the turtle for each of them.   

They asked if they could also go to Hot Topic.  This is a goth type store with a lot of stuff pertaining to my little pony, Dr. Who and heavy  metal  t-shirts etc.  It was quite a weird store in my opinion.  Nicole who usually isn’t a shopper bought 5 shirts plus one for Shayne which was a matching one of the my little ponies shirt she bought.   She also bought a my  little pony rubber bracelet one  for her and one for Shayne.  Shayne bought her a vinyl collectible Fluttershy  (which is one of her favorite ponies) and a turret I believe from Dr. Who.  They had fun.  Nicole had to get out of her wheelchair and walk around the store because it’s not big enough and there is too much stuff to be able to get around.  This is a different blog for a different time!  I looked out into the mall and Rick was sitting in the wheelchair waiting for us.  I got a picture of him with the disposable camera that make-a-wish sent for Nicole. I started to walk out to talk to him and he said is that merchandise in your hand?   I quickly ran back in the store.  

When they were done we decided to go to Ruby Tuesdays for lunch since there was no way a wheelchair was going to be able to get around in the food court.   I asked the waitress if she knew if there was a drugstore in the mall as Nicole needed a heating pad and I didn’t bring ours.  I was lucky I brought her pain meds .  Rick went and got one while we finished up our lunch.  We then called the driver and he took us back to the mall.   Rick left to go home from the hotel.  Nicole was tired so she rested and Shayne and I had a nice conversation.  I said to him that he was so happy and positive and Nicole needed that.  He said he didn’t use to be but one day he decided that we are only here for a short period of time and that life was too short.  How wise for such a young person.   I asked Nicole when she knew we were going to Build a Bear and she said when we got there.  She thought I was taking her somewhere for an art class. 

After Nicole woke up, we changed her pump.  The kids didn’t want any dinner and just wanted to snack with the snacks I had and that were in the room.  I believed they watched TV, talked, laughed and played monopoly.  When it was time for me to go to bed they went to Shayne’s room to finish working and playing on the computer.  

Thursday, July 11^th

Our plan was to go to Sea World but Nicole was in a lot of pain and could barely walk. She knew it wouldn’t be the best idea and Shayne had already assured her that he didn’t care if they went or not.  Nicole didn’t sleep good again which is normal the first couple of nights after a site change.   

Around noon or so after they had been up a couple of hours they decided that they were going to get lunch and walk around the hotel.  After they left I ordered lunch from room service and just chilled and read my book on my iPad.  I worried about Nicole but knew if something happened Shayne would text me.  When they came back I asked them what they had done and they said they had gone to the less fanciest of the two restaurants and gotten lunch.  I asked what they had and I believe Shayne said  Nicole had a chicken sandwich and he had an angus burger.  They each cut their sandwiches in half and swapped.  How cute is this?  They went to the gift shop and I said  to Nicole “and you didn’t buy me anything?”  She said she saw this notebook that I would’ve liked but it was $50.   I am glad she didn’t get it.  They also walked around a little bit.

I asked if I could go into Shayne’s room and see Nicole’s new computer.  Shayne came in a couple minutes later to show me the screen saver that he had put on for Nicole that she hadn't seen yet.  We talked for quite a while.  Nicole started to get upset and crying because tomorrow would be Friday.  I said why get upset he was still here now.  They decided to purchase a movie.  During this time the housekeeper came in to clean the rooms.  Shayne and Nicole were lying on top of the bed watching the movie.  She saw that Nicole was on oxygen and asked if she had asthma and I said it was much worse than asthma.  She said she hoped she felt better and gave her a bunch of chocolate squares that they leave on the pillow.   Nicole and Shayne fell asleep for a little while after the movie.  About 11:00 they got all their stuff together to go play on the computer and I went to sleep. 

Friday, July 12^th

Nicole woke me up at 5:00 a.m. when she came in to the room to get into bed.  I believe they had stayed up all night.  She said she had fallen asleep for about 30 minutes on Shayne’s bed.  I heard Shayne walk her to the door and say goodnight to her.    I had to wake Nicole up at 8:30 a.m. because I needed to call at  9:30 to have our luggage picked up.  The driver was picking us up at 10:00 a.m. to take us back to our house.  I was upset with Nicole because she wanted something I had already packed to give to Shayne and she started unpacking things to find it. I snapped at her to trust me as I had what she wanted and I would give it to her when we got home.  I was also ticked off as they hadn’t packed up the computer etc.  I could tell as soon as I saw Shayne that the mood between them was somber.  Shayne was going to  push Nicole down to the car and I was going to take his luggage.  I checked out and we loaded everything  up and left.  When we got to our house I realized that Shayne’s bag wasn’t with us.  I called the driver and he said it wasn’t  in the car.  I called the hotel and sure enough I had left it out front.  They were going to hold it and the driver was nice enough to take Shayne back there on the way to the airport but he was going to have to leave at 2:15 p.m. instead of 2:30 p.m  I felt so bad.  Shayne said it was okay but I said it wasn’t.   Shayne cleared off Nicole’s desk as well as put up her monitor and hard drive the way she wanted it.  

I ordered pizza for lunch.  Shayne looked through Nicole’s sketch pad of drawings and then they went in her room so she could lie down.  The pizza took over an hour to get so Shayne had to eat it quickly.  It was very emotional.  Nicole started to say goodb…and then said “see you later”. 

Afterward, Nicole asked me if I liked Shayne. I asked if it mattered if I did or not.  She said she wanted me to like him but probably not.  I said “what’s not to like?”  I had a couple of nice conversations with Shayne and he is a very nice, respectful, mature young man.  

It is very clear that he cares a lot for Nicole.  Like Nicole, I worried that he will/would bale on her after  meeting her because he could physically see what Nicole’s life is like and the baggage she has.  He says he’s not going to bale on her and their friendship. 

I told Shayne this myself but I will say it again.  I am so grateful  to him for being the friend that he has been to her.  He truly is her very best friend and has been there for her.  I will always be grateful  for that. 

Nicole’s wish came true and it was all because of make-a-wish and Shayne.  I haven’t seen Nicole smile and laugh as much as she did this week in at least four years.  

When I was showing the pictures that I had taken on my phone to  Nicole’s grandparents her grandpa said when he saw the picture of Nicole with pinkie pie (I think) he hasn’t seen her smile like that in a long  time. 

Thank you so much Shayne and to his parents for allowing and encouraging him to be a part of this.  You made Nicole so very happy.  You made me happy as her mom to see her so happy.  You truly are her rock star/movie star.