Nicole took her last doses of antibiotics yesterday. I know she was so thankful as the Flagyl caused a very bad taste in her mouth where nothing tasted good and also the nausea was brutal. She also vomited last night.
We had a follow up appointment that the doctor requested upon her discharge from the hospital. He answered all our questions today. My biggest question was/is how did she get colitis? He doesn't know. Every blood culture and every test for bacterias that cause colitis came back negative. He is also curious as to why they couldn't see her appendix on the catscan. He said he wasn't totally convinced that she had infectious colitis as this is usually widespread through the colon and hers was focal in one spot where the colon joins the appendix that they couldn't see. The antibiotics took the fever away so as he said to Nicole she is just a mystery to them. I agree with this. Nicole her whole life has had issues that the doctors can't tell us why she has them. He couldn't answer with certainty if this would happen again. I explained to him about the Remodulin causes diarrhea and he said that her having diarrhea on a regular would not cause colitis.
He did recommend that she be evaluated again with a gastroenterologist. She has seen two different ones in her lifetime. She has had a sonogram, an endoscopy, been tested for lactose intolerance, celiac disease and I believe that is all. He believes that she should be tested for crohn's disease and/or colitis that is caused by ulcers which both fall into irritable bowel disease. I didn't find anything that said irritable bowel syndrome will cause colitis and he didn't mention being tested for that. He said that they did not have to put her to sleep for a colonoscopy they could just sedate her.
I will just wait for a report from his office of the visit and then talk to her ph specialist and her cardiologist and get their opinion on how this should be handled. I definitely don't want to see her in the hospital again and I know she doesn't either.
Friday, February 1, 2013
Friday, January 4, 2013
Transplant evaluation update
Nicole was recommended for transplant in November of 2012 by her cardiologist and pulmonary hypertension specialist. On November 20, 2012 she saw the director of the heart/lung transplant department at Florida Hospital Transplant Center.
On Dec. 5th she saw the medical director for the lung transplant department. There is no question that Nicole needs a double lung transplant but the question is what to do with her heart. Nicole was born with what they have told us are several congenital heart defects. She has a large VSD (ventricular septal defect). A VSD is a hole between the left and right ventricles of the heart which is the lower chambers of the heart. We were also told she has three other smaller VSD's. We were told that she also has an ASD (atrial septal defect) which is a hold between the right and left atrium which is the top part of the heart. Because these defects weren't diagnosed until Nicole was 15 years old it has caused Eisenmengers Syndrome which is a rare heart condition that causes reverse shunting of the heart. In a normal heart the blood shunts from left to right but with Nicole it will at some point reverse to right to left which will cause heart failure. The combination of the heart defects and Eisenmengers has caused her pulmonary arterial hypertension which is high blood pressure within the arteries in the lungs which basically causes the arteries to narrow and cause difficulty with breathing. The damage done to Nicole's lungs can't be reversed and there is no cure for this disease.
The lung director had ordered three different tests to get good pictures of Nicole's heart and the way it functions so a team of doctors which include the two at the transplant center, Nicole's cardiologist, Nicole's PH specialist and a pediatric heart surgeon who specializes in congenital heart defects can get together and figure out if the heart can be repaired or if she needs a new heart.
On Dec. 21st Nicole had her first heart related test called a CCTA scan which stands for cardiac computed tomography angiography. This is an imaging method that uses a CT scan machine to look at structures and blood vessels of the heart. Dye is injected into an IV and then pictures are taken of how the dye moves within the heart. This test seemed to go well and the worse part Nicole said was when they injected the dye as it made her feel real warm and the sensation of peeing her pants. We were told by the nurse that they got some good pictures. This was an outpatient procedure. We ended up driving a hour away to another Florida Hospital because they had a better machine.
On Dec. 28th she had her second heart related test called a TEE which stands for transesophageal echocardiogram which uses sound waves to create high quality moving pictures of the heart and its blood vessels. A camera was stuck down Nicole's throat and pictures where taken from Nicole's stomach of her heart and captured on a sonogram machine. The worst part of this test was the gargling of the numbing solution. Nicole had to gargle three times for a minute or two each time and then swallow the stuff. The first time her gag reflex took over and she spit it back out so the next two times I had to hold her mouth shut. When Nicole had to start the gargling the nurses told me that I had to go into the waiting room but Nicole got very nervous and anxious which her doctor saw and said that mom should stay for this part. Right before I left they gave her the medicine for the sedation part. The doctor wanted to make sure that she didn't remember any of the procedure .... which she didn't. She seemed to take a long time to come out of the sedation. The doctor showed me all the pictures and explained everything to me. During the procedure they inject bubbles and they can determine where the holes are by watching them. The doctor could not see any evidence of an ASD as the bubbles didn't travel across from the ventricles to the atrium (there's a flap type thing that separates the two chambers). He also didn't see three smaller VSD's but what he believed was a channel that gives off the illusion of three smaller holes but he thinks it is only one. He said that her right ventricle looked very good. With PH the disease will weaken the right ventricle and so far this hasn't happened in Nicole's case. He said her bicuspid valve looked very good with no leakage and he thought maybe the pressures have come down in her lungs. The doctor and I were very encouraged by this but an echo isn't always an accurate indicator so this is why the gold standard testing is the right heart catheterization.
On Jan. 2nd Nicole had a right heart catheterization. Anytime she has this procedure it requires an overnight stay in one of the lovely suites in the cardiac ICU floor of the hospital. Nicole was going to be sedated again for the procedure since putting a patient "to sleep" is very dangerous for someone with PH. Once again she woke up during the procedure because the anesthesiologist I think is a little over cautious which isn't necessarily a bad thing but it can create a bad experience for Nicole. The procedure seems to take longer than I always think. We were in the prep room where they start the IV get all the history meet the doctor's etc. and my friend and Nicole's old respiratory therapist at rehab happened to look on facebook and see that Nicole was at the hospital and came by to see her. She stayed in the waiting room with us until I was called and told that the procedure was over. She then went home. I told her she could stay and go see her but she didn't want to intrude on "family time". I absolutely love Kathy and everything she has done for Nicole and me. It was very nice of her to spend her first day off from work in a long time to sit at the hospital with us. One of the doctor's came in and explained how things went. He said her pressures didn't go down but the number he used reflected a lower number than last time. He said essentially everything was the same as her last cath in June 2012. He did say that she doesn't have an ASD but an PFO which is a patent foramen ovale which is a hole between the left/right atrium but technically isn't a "true" hole but more like a flap that intermediately will open and allow blood to cross over. I think that this is right but I could have it reversed but the left side of the heart has the red blood and the right side has the blue blood and with Nicole's VSD they are mixing so her lungs and other parts of her body are getting blue blood when she should be receiving red blood. If you see Nicole without O2 (oxygen) her lips may be blue and her fingernails and toenails are always blue and this is called cynosis which is caused by her VSD. The two doctor's present for the cath both agreed with Nicole's PH specialist that there was a channel along the ventricle that gave off the illusion of three smaller holes but in actuality he believed there was only one. During this procedure they also checked the pressures in her liver because increased pressures in the lungs can travel and impact the liver thankfully her liver is good. After the procedure Nicole had to lay flat without moving for four to six hours. When they took the balloon thing off her groin she was almost in tears from the pain... it breaks my heart. She is so brave and is such a trooper.
It is my assumption that I will get a call from the lung department at the transplant center having us come in to explain all the conclusions that the testing came up with and what is the plan in regards to Nicole's heart .... transplant vs. repair.
I will keep you all posted as we go down the path to possible lung/heart transplantation.
I know that there are more tests that need to be done but I hope that these were the most strenuous for Nicole. It is very stressful and difficult watching Nicole get all these tests done and the anxiety and stress this causes all of us.
On Dec. 5th she saw the medical director for the lung transplant department. There is no question that Nicole needs a double lung transplant but the question is what to do with her heart. Nicole was born with what they have told us are several congenital heart defects. She has a large VSD (ventricular septal defect). A VSD is a hole between the left and right ventricles of the heart which is the lower chambers of the heart. We were also told she has three other smaller VSD's. We were told that she also has an ASD (atrial septal defect) which is a hold between the right and left atrium which is the top part of the heart. Because these defects weren't diagnosed until Nicole was 15 years old it has caused Eisenmengers Syndrome which is a rare heart condition that causes reverse shunting of the heart. In a normal heart the blood shunts from left to right but with Nicole it will at some point reverse to right to left which will cause heart failure. The combination of the heart defects and Eisenmengers has caused her pulmonary arterial hypertension which is high blood pressure within the arteries in the lungs which basically causes the arteries to narrow and cause difficulty with breathing. The damage done to Nicole's lungs can't be reversed and there is no cure for this disease.
The lung director had ordered three different tests to get good pictures of Nicole's heart and the way it functions so a team of doctors which include the two at the transplant center, Nicole's cardiologist, Nicole's PH specialist and a pediatric heart surgeon who specializes in congenital heart defects can get together and figure out if the heart can be repaired or if she needs a new heart.
On Dec. 21st Nicole had her first heart related test called a CCTA scan which stands for cardiac computed tomography angiography. This is an imaging method that uses a CT scan machine to look at structures and blood vessels of the heart. Dye is injected into an IV and then pictures are taken of how the dye moves within the heart. This test seemed to go well and the worse part Nicole said was when they injected the dye as it made her feel real warm and the sensation of peeing her pants. We were told by the nurse that they got some good pictures. This was an outpatient procedure. We ended up driving a hour away to another Florida Hospital because they had a better machine.
On Dec. 28th she had her second heart related test called a TEE which stands for transesophageal echocardiogram which uses sound waves to create high quality moving pictures of the heart and its blood vessels. A camera was stuck down Nicole's throat and pictures where taken from Nicole's stomach of her heart and captured on a sonogram machine. The worst part of this test was the gargling of the numbing solution. Nicole had to gargle three times for a minute or two each time and then swallow the stuff. The first time her gag reflex took over and she spit it back out so the next two times I had to hold her mouth shut. When Nicole had to start the gargling the nurses told me that I had to go into the waiting room but Nicole got very nervous and anxious which her doctor saw and said that mom should stay for this part. Right before I left they gave her the medicine for the sedation part. The doctor wanted to make sure that she didn't remember any of the procedure .... which she didn't. She seemed to take a long time to come out of the sedation. The doctor showed me all the pictures and explained everything to me. During the procedure they inject bubbles and they can determine where the holes are by watching them. The doctor could not see any evidence of an ASD as the bubbles didn't travel across from the ventricles to the atrium (there's a flap type thing that separates the two chambers). He also didn't see three smaller VSD's but what he believed was a channel that gives off the illusion of three smaller holes but he thinks it is only one. He said that her right ventricle looked very good. With PH the disease will weaken the right ventricle and so far this hasn't happened in Nicole's case. He said her bicuspid valve looked very good with no leakage and he thought maybe the pressures have come down in her lungs. The doctor and I were very encouraged by this but an echo isn't always an accurate indicator so this is why the gold standard testing is the right heart catheterization.
On Jan. 2nd Nicole had a right heart catheterization. Anytime she has this procedure it requires an overnight stay in one of the lovely suites in the cardiac ICU floor of the hospital. Nicole was going to be sedated again for the procedure since putting a patient "to sleep" is very dangerous for someone with PH. Once again she woke up during the procedure because the anesthesiologist I think is a little over cautious which isn't necessarily a bad thing but it can create a bad experience for Nicole. The procedure seems to take longer than I always think. We were in the prep room where they start the IV get all the history meet the doctor's etc. and my friend and Nicole's old respiratory therapist at rehab happened to look on facebook and see that Nicole was at the hospital and came by to see her. She stayed in the waiting room with us until I was called and told that the procedure was over. She then went home. I told her she could stay and go see her but she didn't want to intrude on "family time". I absolutely love Kathy and everything she has done for Nicole and me. It was very nice of her to spend her first day off from work in a long time to sit at the hospital with us. One of the doctor's came in and explained how things went. He said her pressures didn't go down but the number he used reflected a lower number than last time. He said essentially everything was the same as her last cath in June 2012. He did say that she doesn't have an ASD but an PFO which is a patent foramen ovale which is a hole between the left/right atrium but technically isn't a "true" hole but more like a flap that intermediately will open and allow blood to cross over. I think that this is right but I could have it reversed but the left side of the heart has the red blood and the right side has the blue blood and with Nicole's VSD they are mixing so her lungs and other parts of her body are getting blue blood when she should be receiving red blood. If you see Nicole without O2 (oxygen) her lips may be blue and her fingernails and toenails are always blue and this is called cynosis which is caused by her VSD. The two doctor's present for the cath both agreed with Nicole's PH specialist that there was a channel along the ventricle that gave off the illusion of three smaller holes but in actuality he believed there was only one. During this procedure they also checked the pressures in her liver because increased pressures in the lungs can travel and impact the liver thankfully her liver is good. After the procedure Nicole had to lay flat without moving for four to six hours. When they took the balloon thing off her groin she was almost in tears from the pain... it breaks my heart. She is so brave and is such a trooper.
It is my assumption that I will get a call from the lung department at the transplant center having us come in to explain all the conclusions that the testing came up with and what is the plan in regards to Nicole's heart .... transplant vs. repair.
I will keep you all posted as we go down the path to possible lung/heart transplantation.
I know that there are more tests that need to be done but I hope that these were the most strenuous for Nicole. It is very stressful and difficult watching Nicole get all these tests done and the anxiety and stress this causes all of us.
Thursday, November 1, 2012
November is Family Caregiver Month...
Today is the first day of family caregiver month. I was thrust into this role almost three years ago in January 2010 when my then 15 year old daughter was diagnosed with a congenital heart defect as well as pulmonary arterial hypertension and Eisenmengers Syndrome. Both of these were caused by the lack of diagnosis of her congenital heart defect.
To say this role has been difficult is an understatement. Our lives were forever turned upside down. For any caregiver, it is painful to watch your loved one be sick and/or watch them get sicker. I can't express the feelings of helplessness I feel every single day.
I had a friend on facebook private message me apologizing that she hadn't wished me a happy birthday. She said that she thought about me every single day and wished with all of her being that she could help... but to no avail. This really got me thinking about my experience with friends and acquaintances. I get those who are just very uncomfortable around me for whatever reason... then there are those who don't want to bother me because I have "too much on my plate" and while this may be true ... it is my decision to make as to whether or not this is true in my eyes.
There are those like my friend who feel that there's nothing that they can do but there are so many things you can do to help a family caregiver. I belong to a wonderful online community of caregivers at www.caregiving.com and every Friday is take a meal to a family caregiver day. I think that this is a wonderful idea. You can call, text, email, private message a caregiver that you are thinking of them and it doesn't cost anything and it will put a smile on their face. In Sept. Nicole had a doctor's appointment and a site change the same day and it was going to be a long day and a friend of mine late in the afternoon when we were still at the doctor's office called me and said she had a meal for me that she wanted to bring by. This was so sweet of her and while she had to bring me the meal the next day it was so much appreciated. A get together for an hour for a cup of coffee, stopping by the house to say "hi", a card in the mail etc.are all little things that mean so much. My next door neighbor will bring me my mail, bring up my garbage can on garbage days and/or just come over to ask how Nicole is doing. It doesn't have to be something big to make an impact on a caregiver's day.
I understand how my friend feels. I can't express how it feels to have a child (whether they are young or an adult) with an incurable illness. The guilt (at least for me) and the helplessness I feel some days overwhelms me. To me there is just a different bond/relationship that a mother has with a child than with any other relationship. This is not to say that caregiving isn't difficult for anyone who who takes care of a parent, spouse, sibling, friend etc. because it is.
I know that I can't make Nicole better which is a very hard pill to swallow and I wallow in this with denial, self-pity etc. but I have to think about Nicole as she is the one with the illness. I would do anything to be able to make her better but since God is the only one that can do this and the only thing I can do is to make her life easier which is my goal every day and I will strive to do this to the best of my ability regardless what people say or how they judge.
What can you do today to make life easier for a family caregiver?
To say this role has been difficult is an understatement. Our lives were forever turned upside down. For any caregiver, it is painful to watch your loved one be sick and/or watch them get sicker. I can't express the feelings of helplessness I feel every single day.
I had a friend on facebook private message me apologizing that she hadn't wished me a happy birthday. She said that she thought about me every single day and wished with all of her being that she could help... but to no avail. This really got me thinking about my experience with friends and acquaintances. I get those who are just very uncomfortable around me for whatever reason... then there are those who don't want to bother me because I have "too much on my plate" and while this may be true ... it is my decision to make as to whether or not this is true in my eyes.
There are those like my friend who feel that there's nothing that they can do but there are so many things you can do to help a family caregiver. I belong to a wonderful online community of caregivers at www.caregiving.com and every Friday is take a meal to a family caregiver day. I think that this is a wonderful idea. You can call, text, email, private message a caregiver that you are thinking of them and it doesn't cost anything and it will put a smile on their face. In Sept. Nicole had a doctor's appointment and a site change the same day and it was going to be a long day and a friend of mine late in the afternoon when we were still at the doctor's office called me and said she had a meal for me that she wanted to bring by. This was so sweet of her and while she had to bring me the meal the next day it was so much appreciated. A get together for an hour for a cup of coffee, stopping by the house to say "hi", a card in the mail etc.are all little things that mean so much. My next door neighbor will bring me my mail, bring up my garbage can on garbage days and/or just come over to ask how Nicole is doing. It doesn't have to be something big to make an impact on a caregiver's day.
I understand how my friend feels. I can't express how it feels to have a child (whether they are young or an adult) with an incurable illness. The guilt (at least for me) and the helplessness I feel some days overwhelms me. To me there is just a different bond/relationship that a mother has with a child than with any other relationship. This is not to say that caregiving isn't difficult for anyone who who takes care of a parent, spouse, sibling, friend etc. because it is.
I know that I can't make Nicole better which is a very hard pill to swallow and I wallow in this with denial, self-pity etc. but I have to think about Nicole as she is the one with the illness. I would do anything to be able to make her better but since God is the only one that can do this and the only thing I can do is to make her life easier which is my goal every day and I will strive to do this to the best of my ability regardless what people say or how they judge.
What can you do today to make life easier for a family caregiver?
Thursday, October 18, 2012
Forgiveness...
Earlier this month I was watching a week of shows on forgiveness with Joyce Meyer. She just released a new book in September called "Do Yourself a Favor.... Forgive" . I have not read the book yet but I will get to it soon.
One show had an interview with Sandra, Joyce's daughter. She was talking about her struggle with forgiveness. Her struggle with this was with herself. I also have a very big problem with this. Sometimes I believe more so than with forgiving others. Sandra talked about how she would go to bed every night feeling bad because of all the things she didn't get done on her to do list. She would never be at peace. I feel this same exact way. I feel so bad if I don't get my to do list done for the day. Some of my problem is that I procrastinate and then things pile up and I also goof off... read a book, surf the net, facebook you name it anything to keep me from my reality and to do list. This makes me feel bad because if I didn't put things off I might actually get my to do list done. Sandra said she had to change her attitude to looking at it from the stand point of what she did get done and not from what she didn't get done. My friend, Denise, has told me to do this too but so far this concept hasn't reached through to my stubborn brain.
I have struggled with offense and taking things too personal. I have had a lot of people tell me they are going to do this or that and then they never do. This happens to be a real pet peeve of mine and I am very conscious that I don't do this myself. I consciously try not to do this to others but I will do this to myself and Nicole. Denise also believes that this struggle with offense and taking things personally against me is tied to my parents divorce and the relationship I had/didn't have with my dad when I was a teenager. I can see where there might be a connection but I don't like putting the blame on others unless it is clear the blame goes there. I think it is too easy of a trap that we fall into when we start blaming others.
I have had to forgive a lot since 2010 with friends and family not living up to MY expectations and causing me to be offended, hurt, and to question myself. God says we should be quick to forgive like he forgives us. I think one of the biggest people I have had to forgive is myself and my role in Nicole's illness. I wish I could say with peace that I have forgiven myself but I can't as this is still a work in progress.
I think so many things tie into forgiveness ... our own expectations, offense and pride to name a few.
One show had an interview with Sandra, Joyce's daughter. She was talking about her struggle with forgiveness. Her struggle with this was with herself. I also have a very big problem with this. Sometimes I believe more so than with forgiving others. Sandra talked about how she would go to bed every night feeling bad because of all the things she didn't get done on her to do list. She would never be at peace. I feel this same exact way. I feel so bad if I don't get my to do list done for the day. Some of my problem is that I procrastinate and then things pile up and I also goof off... read a book, surf the net, facebook you name it anything to keep me from my reality and to do list. This makes me feel bad because if I didn't put things off I might actually get my to do list done. Sandra said she had to change her attitude to looking at it from the stand point of what she did get done and not from what she didn't get done. My friend, Denise, has told me to do this too but so far this concept hasn't reached through to my stubborn brain.
I have struggled with offense and taking things too personal. I have had a lot of people tell me they are going to do this or that and then they never do. This happens to be a real pet peeve of mine and I am very conscious that I don't do this myself. I consciously try not to do this to others but I will do this to myself and Nicole. Denise also believes that this struggle with offense and taking things personally against me is tied to my parents divorce and the relationship I had/didn't have with my dad when I was a teenager. I can see where there might be a connection but I don't like putting the blame on others unless it is clear the blame goes there. I think it is too easy of a trap that we fall into when we start blaming others.
I have had to forgive a lot since 2010 with friends and family not living up to MY expectations and causing me to be offended, hurt, and to question myself. God says we should be quick to forgive like he forgives us. I think one of the biggest people I have had to forgive is myself and my role in Nicole's illness. I wish I could say with peace that I have forgiven myself but I can't as this is still a work in progress.
I think so many things tie into forgiveness ... our own expectations, offense and pride to name a few.
Thursday, October 11, 2012
What is the next step?
Nicole started a new continuous drug that is supplied via an infusion pump that is delivered subcutaneously (through the skin) on July 25th. The doctor had high hopes that this would significantly improve Nicole's symptoms and make her feel better.
Between July 25th and August 27th Nicole was slowly being weaned off of the inhaled medicine, Tyvaso, that she had been on since Dec. 2010. After she stopped the Tyvaso I saw a big difference in her symptoms and how she was feeling. It wasn't an improvement. On Sept. 7th she went in to see the PH specialist and he saw how bad she looked and we discussed how she had been feeling. He immediately had her get an echo and then gave us a script for a chest x-ray to rule out any pneumonia or anything since she had been congested. The echo came back with no change since the last one which was three months prior to that. At this time, the doctor didn't have an answer for why she wasn't feeling well and her symptoms had increased. He said to increase her Remodulin every other day with pump changes until the vial we were using was gone and then when we started a higher strength vial we would go back to increases every three days.
We had been told by one of the nurses that if her blood pressure got below 85 (the top number) we were suppose to contact the PH doctor. On Sept. 16th after Nicole finished with rehab they took her blood pressure and it was 80/60 so I had to call the doctor's office. I talked to one of the trauma nurses who told me to have Nicole drink some juice and a bottle of water and re-take her blood pressure in thirty minutes we were not to leave the hospital. If her blood pressure didn't come up we would have to leave Florida Hospital and go to ORMC as this is where her doctor has privileges. Nicole was showing no adverse effects of the low blood pressure and said she felt no different than usual. Thankfully, after thirty minutes her blood pressure did go back up and we were able to come home. The nurse had asked me about side effects and her current rate of Remodulin. She said that she would give all the information to the doctor. Later that afternoon the doctor called me and said that he was disappointed that he hasn't seen more progress with the Remodulin. Nicole was having some major side effects with the dose increases that wasn't helping. At this time he stopped the increases and told me that he thought it was time to talk about the next step which is transplant. I remember that I started to tear up and get emotional. We have known since Nicole's diagnosis that this would be the end result but I didn't think it would be so soon. Since this conversation with the doctor Nicole has been on a steady dose of the Remodulin and she is doing well compared to August and the beginning to middle of September. I haven't heard from the doctor since this conversation but I know Nicole's cardiologist has spoken to him.
Nicole saw her cardiologist on Tuesday for her three month check-up. He had called around to some major hospitals around the country inquiring about transplants and what there procedures were etc. He also contacted two of the transplant hospitals in this area and told me where he thought would be the best place for us to go. He also agrees with the PH specialist that it is time to be evaluated. It should be sooner rather than wait for later. The transplant process is long.
I have mixed feelings about this. I don't think that the Remodulin has been at a high enough dose nor used long enough to see if in fact it will significantly improve her symptoms. I have noticed with Nicole especially in July when she started taking the hormone to regulate her periods that her exercise tolerance at rehab suffered. I think that anytime she starts/stops a medication her body rebels and she doesn't feel well for a period of time. She is just now starting to get back her exercise tolerance at rehab.
I remember on Tuesday sitting in the cardiologist listening to him talking and remembering that January day in 2010 in that same office being told that Nicole had this deadly disease and a heart defect that she had been born with. I have been able to since this time for the most part stick my head in the sand and forget just how sick she is (even though she doesn't look it). When the cardiologist recommended the evaluation also it all hit me in the face. I can deal with the life that we have now with this illness but I don't know if I can watch Nicole go through what she will go through during major heart surgery and a double lung transplant. I was reading a little about lung transplant results and found that the survival rate for lung transplants is 82% but in my mind I think not of the 82% percent who survive but the 18% who don't.
A part of me believes that she needs to be on a higher dose and longer time on the Remodulin before we can say it was a failure but something that the cardiologist said really hit be like a brick in the face. He said " if she had one bout of diarreha where she could keep no fluids down it would be lethal." I can talk myself into believing that even though Nicole is ill she isn't that ill and she does all right for herself even though I know in the back of my mind if she got the flu she would be in the hospital and it could be potentially deadly for her. I understand the doctors don't want to wait to long because of the length of time this process takes but I am just not ready to deal with this and I don't think that I have been able to deal with this since her diagnosis but I just fake it.
In 2009 I believe God put in my heart to "get my house in order". I have quite a bit of clutter and not enough house. I, of course, have put this off thinking that God didn't really speak to me etc. I have been trying to declutter at least 15 minutes a day if it is busy and if I am home for the day I will go for 30 minutes if not longer. I struggle with this because I don't want to do this (just like I don't want Nicole to be sick). I have to make decisions every day about Nicole's medical issues, finances etc. and don't seem to have a hard time with this most of the time but make me look at a piece of clutter and decide what to do with it and I can't. I was already overwhelmed with my duties the past couple of week as Nicole's teacher and getting out her progress reports to the school we use for that along with a ton of paperwork that I have to fill out for Nicole's disability review for SSI as well as some other commitments that I have and my mind has turned into a tornado swirling around.
Sometimes I just feel like I want to stop the world just for a day and not have any problems so I can get my head in order, unfortunately, I know this isn't likely to happen. I always think of myself and what this is like for me but I don't consider that it is Nicole that has to live this life. I feel that life is the hardest for those that are left behind. We are the ones who grieve the loss not the person who passed. I don't know if this is just my warped feelings or if it has some merit. I have been reading this book called "When Bad Things Happen to Good People" . The author was talking about how people respond to tragedy and that the majority (I'm included) assume that God is the cause of the suffering because we deserve punishment or He doesn't care. We are left hating ourselves for deserving the fate or hating God for sending this to us. He asks could it be that God doesn't cause our suffering but He stands ready to help cope with the tragedies? I have been thinking a lot about this lately. I'm still not clear on my feelings about it though.
Between July 25th and August 27th Nicole was slowly being weaned off of the inhaled medicine, Tyvaso, that she had been on since Dec. 2010. After she stopped the Tyvaso I saw a big difference in her symptoms and how she was feeling. It wasn't an improvement. On Sept. 7th she went in to see the PH specialist and he saw how bad she looked and we discussed how she had been feeling. He immediately had her get an echo and then gave us a script for a chest x-ray to rule out any pneumonia or anything since she had been congested. The echo came back with no change since the last one which was three months prior to that. At this time, the doctor didn't have an answer for why she wasn't feeling well and her symptoms had increased. He said to increase her Remodulin every other day with pump changes until the vial we were using was gone and then when we started a higher strength vial we would go back to increases every three days.
We had been told by one of the nurses that if her blood pressure got below 85 (the top number) we were suppose to contact the PH doctor. On Sept. 16th after Nicole finished with rehab they took her blood pressure and it was 80/60 so I had to call the doctor's office. I talked to one of the trauma nurses who told me to have Nicole drink some juice and a bottle of water and re-take her blood pressure in thirty minutes we were not to leave the hospital. If her blood pressure didn't come up we would have to leave Florida Hospital and go to ORMC as this is where her doctor has privileges. Nicole was showing no adverse effects of the low blood pressure and said she felt no different than usual. Thankfully, after thirty minutes her blood pressure did go back up and we were able to come home. The nurse had asked me about side effects and her current rate of Remodulin. She said that she would give all the information to the doctor. Later that afternoon the doctor called me and said that he was disappointed that he hasn't seen more progress with the Remodulin. Nicole was having some major side effects with the dose increases that wasn't helping. At this time he stopped the increases and told me that he thought it was time to talk about the next step which is transplant. I remember that I started to tear up and get emotional. We have known since Nicole's diagnosis that this would be the end result but I didn't think it would be so soon. Since this conversation with the doctor Nicole has been on a steady dose of the Remodulin and she is doing well compared to August and the beginning to middle of September. I haven't heard from the doctor since this conversation but I know Nicole's cardiologist has spoken to him.
Nicole saw her cardiologist on Tuesday for her three month check-up. He had called around to some major hospitals around the country inquiring about transplants and what there procedures were etc. He also contacted two of the transplant hospitals in this area and told me where he thought would be the best place for us to go. He also agrees with the PH specialist that it is time to be evaluated. It should be sooner rather than wait for later. The transplant process is long.
I have mixed feelings about this. I don't think that the Remodulin has been at a high enough dose nor used long enough to see if in fact it will significantly improve her symptoms. I have noticed with Nicole especially in July when she started taking the hormone to regulate her periods that her exercise tolerance at rehab suffered. I think that anytime she starts/stops a medication her body rebels and she doesn't feel well for a period of time. She is just now starting to get back her exercise tolerance at rehab.
I remember on Tuesday sitting in the cardiologist listening to him talking and remembering that January day in 2010 in that same office being told that Nicole had this deadly disease and a heart defect that she had been born with. I have been able to since this time for the most part stick my head in the sand and forget just how sick she is (even though she doesn't look it). When the cardiologist recommended the evaluation also it all hit me in the face. I can deal with the life that we have now with this illness but I don't know if I can watch Nicole go through what she will go through during major heart surgery and a double lung transplant. I was reading a little about lung transplant results and found that the survival rate for lung transplants is 82% but in my mind I think not of the 82% percent who survive but the 18% who don't.
A part of me believes that she needs to be on a higher dose and longer time on the Remodulin before we can say it was a failure but something that the cardiologist said really hit be like a brick in the face. He said " if she had one bout of diarreha where she could keep no fluids down it would be lethal." I can talk myself into believing that even though Nicole is ill she isn't that ill and she does all right for herself even though I know in the back of my mind if she got the flu she would be in the hospital and it could be potentially deadly for her. I understand the doctors don't want to wait to long because of the length of time this process takes but I am just not ready to deal with this and I don't think that I have been able to deal with this since her diagnosis but I just fake it.
In 2009 I believe God put in my heart to "get my house in order". I have quite a bit of clutter and not enough house. I, of course, have put this off thinking that God didn't really speak to me etc. I have been trying to declutter at least 15 minutes a day if it is busy and if I am home for the day I will go for 30 minutes if not longer. I struggle with this because I don't want to do this (just like I don't want Nicole to be sick). I have to make decisions every day about Nicole's medical issues, finances etc. and don't seem to have a hard time with this most of the time but make me look at a piece of clutter and decide what to do with it and I can't. I was already overwhelmed with my duties the past couple of week as Nicole's teacher and getting out her progress reports to the school we use for that along with a ton of paperwork that I have to fill out for Nicole's disability review for SSI as well as some other commitments that I have and my mind has turned into a tornado swirling around.
Sometimes I just feel like I want to stop the world just for a day and not have any problems so I can get my head in order, unfortunately, I know this isn't likely to happen. I always think of myself and what this is like for me but I don't consider that it is Nicole that has to live this life. I feel that life is the hardest for those that are left behind. We are the ones who grieve the loss not the person who passed. I don't know if this is just my warped feelings or if it has some merit. I have been reading this book called "When Bad Things Happen to Good People" . The author was talking about how people respond to tragedy and that the majority (I'm included) assume that God is the cause of the suffering because we deserve punishment or He doesn't care. We are left hating ourselves for deserving the fate or hating God for sending this to us. He asks could it be that God doesn't cause our suffering but He stands ready to help cope with the tragedies? I have been thinking a lot about this lately. I'm still not clear on my feelings about it though.
Friday, September 21, 2012
Mixed feelings... I think...
I have a lot of mixed feelings today and I'm sure they will be with me at least through the weekend if not longer. Tomorrow the 22nd will be Nicole's last day as a minor and my last day as her legal guardian. On Sunday, she will be a legal adult.
I wish I knew what it felt like in this situation in a perfect world but I do not and I only know what it feels like with our circumstances and our life. I don't think it would be such a problem for me if Nicole wasn't chronically, terminally ill. All the issues that I deal with on her behalf as her legal guardian/parent no 18 year old should be expected to be able to do themselves. On Monday I will take Nicole to the bank for the notarization giving me power of attorney over her finances and health issues. I struggle with this because of criticism from others that I need to let her go as she is an adult. I would agree with this but I also know my daughter and she isn't capable of this at this point in her life. I don't want to take away her decision-making I just want to be able to take the bulk of the stress away from her as it is detrimental to her health. She is also still in high school.
I am having a hard time getting my thoughts in order so I hope that I am making sense. I feel that I am losing all control and that my job as her mom/legal guardian at least in the eyes of the world, medical community etc. is over. I know logically that I will always be her mom but she will be expected to make her own decisions and I have no say in that other than to Nicole if this is what she wishes. I will always support her in all her hopes, dreams, problems etc. and will do anything I can to help her. I have done my job raising her so now she can move forward with those morals and values and make her mark in the world and I know she has awesome potential to do this but it saddens me that she doesn't see this. I also feel that our relationship will be different but I don't know what this means or looks like.
I don't think that I would have such an emotional struggle with this if Nicole was healthy but she is not so we have to adjust accordingly but I know I will have to battle for this harder than I did as her legal guardian. Social Security doesn't recognize power of attorney so I had to request and was granted representative payee status that gives me authority over Nicole's SSI checks and I am the one accountable to how that money is spent and for what. Nicole and I will come up with a budget and her expenses together but I will handle everything pertaining to bill payment etc. Children's Medical Services doesn't recognize power of attorney only legal guardianship. In order to get legal guardianship I have to go in front of a judge and even if Nicole agrees to it ... she will have no rights and her decision making will be taken away and I don't want to do this.
At the same time as the power of attorney is complete Nicole will also name me as her health care surrogate. I know that she needs to do a living will but I haven't been able to find a way to approach her about this subject. It will be hard for her to deal with because of her anxiety issues and it isn't fun conversation to begin with. In light of the fact that a transplant is down the road at some point this is very important to have.
I know that this is just another day and the world will not end we will just move forward as we have been but a little differently. I will still be an advocate for her and I will do everything I can with her medical issues to take this burden off of her as she carries enough just trying to get through each day so if I have to take calls and talk to doctor's, pharmacies, do her medicine etc this is the least I can do.
I hope that she always knows that no matter what she does I will always love her and this will never change.
I wish I knew what it felt like in this situation in a perfect world but I do not and I only know what it feels like with our circumstances and our life. I don't think it would be such a problem for me if Nicole wasn't chronically, terminally ill. All the issues that I deal with on her behalf as her legal guardian/parent no 18 year old should be expected to be able to do themselves. On Monday I will take Nicole to the bank for the notarization giving me power of attorney over her finances and health issues. I struggle with this because of criticism from others that I need to let her go as she is an adult. I would agree with this but I also know my daughter and she isn't capable of this at this point in her life. I don't want to take away her decision-making I just want to be able to take the bulk of the stress away from her as it is detrimental to her health. She is also still in high school.
I am having a hard time getting my thoughts in order so I hope that I am making sense. I feel that I am losing all control and that my job as her mom/legal guardian at least in the eyes of the world, medical community etc. is over. I know logically that I will always be her mom but she will be expected to make her own decisions and I have no say in that other than to Nicole if this is what she wishes. I will always support her in all her hopes, dreams, problems etc. and will do anything I can to help her. I have done my job raising her so now she can move forward with those morals and values and make her mark in the world and I know she has awesome potential to do this but it saddens me that she doesn't see this. I also feel that our relationship will be different but I don't know what this means or looks like.
I don't think that I would have such an emotional struggle with this if Nicole was healthy but she is not so we have to adjust accordingly but I know I will have to battle for this harder than I did as her legal guardian. Social Security doesn't recognize power of attorney so I had to request and was granted representative payee status that gives me authority over Nicole's SSI checks and I am the one accountable to how that money is spent and for what. Nicole and I will come up with a budget and her expenses together but I will handle everything pertaining to bill payment etc. Children's Medical Services doesn't recognize power of attorney only legal guardianship. In order to get legal guardianship I have to go in front of a judge and even if Nicole agrees to it ... she will have no rights and her decision making will be taken away and I don't want to do this.
At the same time as the power of attorney is complete Nicole will also name me as her health care surrogate. I know that she needs to do a living will but I haven't been able to find a way to approach her about this subject. It will be hard for her to deal with because of her anxiety issues and it isn't fun conversation to begin with. In light of the fact that a transplant is down the road at some point this is very important to have.
I know that this is just another day and the world will not end we will just move forward as we have been but a little differently. I will still be an advocate for her and I will do everything I can with her medical issues to take this burden off of her as she carries enough just trying to get through each day so if I have to take calls and talk to doctor's, pharmacies, do her medicine etc this is the least I can do.
I hope that she always knows that no matter what she does I will always love her and this will never change.
Saturday, September 8, 2012
New Medicine
Nicole started a new medicine, Remodulin, on July 25th which is delivered subcutaneously (SQ) . This means that the medicine is absorbed through the skin through a tiny catheter. She uses a pump that gives her a continuous supply of medicine... like a diabetic.
Nicole seemed to be doing well. On Aug. 27th she took her inhaled medicine for the last time. It is Remodulin in the inhaled form and the doctor wanted her to slowly wean off of it. It seems ever since this time she has had more shortness of breath and more fatigue/tiredness. If she is without oxygen for more than 10 minutes sometimes her lips will start to turn blue. Her ability to exercise at rehab has decreased.
Until we start with a stronger concentration vial of the medicine we have to change Nicole's syringe of medicine and the pump every 2 days a process that takes about 20 minutes if everything goes smooth. Every other pump change came with an increase in the medicine. Nicole seems to be tolerating the medicine well.
I contacted the PH nurse earlier in the week as I am concerned that Nicole isn't feeling well. She was complaining of site pain again also. The nurse recommended the site be changed. On Friday the Accredo nurse and a local nurse were here to help Nicole and I do the site change. This means that the administration site is changed. Nicole's initial site was on her left side stomach area. A decision had to be made where to put her next site. It was decided that we would try the middle abdomen area. Nicole put in the site which at the time of insertion should have no pain other than a prick when the needle goes it and then when it is pulled out. Nicole kept having burning pain so the nurse said that wasn't normal so the site had to be taken out and was moved over closer to her side. It is almost in the same spot as before except on her opposite side. This worked a lot better.
We had an appointment with the doctor that afternoon. She was suppose to do a six minute walk test to see if there has been improvement from a month ago but she wasn't feeling well and just her walking to the back had her SOB (short of breath). Liz could tell she didn't feel well and her oxygen saturation levels were low, even for her. Liz had said she was going to tell the doctor to see her first and then to tell her to do the six minute walk. He didn't make her do it. She would have done worse than 6 weeks ago and she did pretty bad then. I explained to him her symptoms and how ever since she stop the Tyvaso she has felt bad. She was squeezed in for an echo which he said showed no sign of decline from the last one she had which was earlier this year. He said that he is stumped as to why her symptoms are worsening. He told me to get her a chest x-ray next week just to rule out pneumonia since she has had some congestion. He also said that instead of every other syringe/pump change do an increase of medicine every syringe change.
I started the 2.5 mL vial yesterday so according to the pharmacist this will last 12 days. Since we will be doing an increase every two days this means it will only last for maybe 5 more pump changes. The pharmacy called during her doctor's appointment and I wasn't able to take the call. I was told earlier in the day that the pharmacy had gotten the authorization from Medicaid for the 5 mL strength vial :). I know they will be getting that to me next week once I call them on Monday (which will be another long, busy day more for me than Nicole). I also have to compare the dosing chart that I have that tells me how much medicine to put in the syringe, what to set the pump at and how many nanograms of medicine it is and coordinate it to the 5 mL chart.
I'm hoping that this increase in medicine will start to make her feel better. Nicole tends to downplay everything but I know that something is bothering her when she has been quite grumpy which isn't like Nicole. Today she will start the battle of site pain which will probably last until for about 7- 10 days during which time she will be taking pain medication every six hours so it doesn't get too unbearable. Last night she started walking hunched over because of the pain and that will probably continue through the weekend so sitting is the best option for her. My prayer is that she won't have the pain but if she must it will be tolerable.
Yesterday when we were at the doctors, a lady who was there with her husband came over and asked me about Nicole portable oxygen concentrator. I answered her questions and she told me about her husband. She told Nicole how beautiful she was (which she is) and that she hoped that she would get better. Another lady who worked at the office saw us when Nicole was getting her echo and she said hi to me and wished my luck and blessing and seemed very nice. When we were done with the doctor the office had already closed. The doctor pushed Nicole in a wheelchair out into the waiting room as my husband was coming from work to pick us up. The same lady that I saw earlier outside of the echo room came out and told the doctor that she would make sure we got out of the building when Rick got their. She stayed with us and talked to Nicole and I. She said that she knew the doctor would do everything he could for her and she was in good hands. She asked if we had been there before and I said "yes". She said she recognized Nicole. She also told Nicole how pretty she was.
While we were waiting for the doctor to read the echo a friend called me. This person we only know because of Nicole's illness. She had a dinner for us and wanted to drop it off as she knew we had had a long day. She has done so much for me and especially Nicole and for that I am forever grateful. I am forever grateful for her doctor who has also gone above and beyond to help Nicole.
It is very difficult to watch Nicole be so ill, but I am no different or more special than any other parent who has a seriously ill child. It saddens me to watch Nicole some days only focus on her illness and how bad she feels and how hard her life is instead of all the blessings she does have. Nicole doesn't complain but I can see it through her attitude and anxiety. She is beautiful, sweet, kind, intelligent, a very gifted artist and has people who really care about her. I know she is mad at God for letting her be born sick (her congenital heart defect) and doesn't understand. I try to tell her that in some ways she is more special because not every teenager could go through what she does every day. She is an inspiration and some day I hope that she will see that.
Nicole seemed to be doing well. On Aug. 27th she took her inhaled medicine for the last time. It is Remodulin in the inhaled form and the doctor wanted her to slowly wean off of it. It seems ever since this time she has had more shortness of breath and more fatigue/tiredness. If she is without oxygen for more than 10 minutes sometimes her lips will start to turn blue. Her ability to exercise at rehab has decreased.
Until we start with a stronger concentration vial of the medicine we have to change Nicole's syringe of medicine and the pump every 2 days a process that takes about 20 minutes if everything goes smooth. Every other pump change came with an increase in the medicine. Nicole seems to be tolerating the medicine well.
I contacted the PH nurse earlier in the week as I am concerned that Nicole isn't feeling well. She was complaining of site pain again also. The nurse recommended the site be changed. On Friday the Accredo nurse and a local nurse were here to help Nicole and I do the site change. This means that the administration site is changed. Nicole's initial site was on her left side stomach area. A decision had to be made where to put her next site. It was decided that we would try the middle abdomen area. Nicole put in the site which at the time of insertion should have no pain other than a prick when the needle goes it and then when it is pulled out. Nicole kept having burning pain so the nurse said that wasn't normal so the site had to be taken out and was moved over closer to her side. It is almost in the same spot as before except on her opposite side. This worked a lot better.
We had an appointment with the doctor that afternoon. She was suppose to do a six minute walk test to see if there has been improvement from a month ago but she wasn't feeling well and just her walking to the back had her SOB (short of breath). Liz could tell she didn't feel well and her oxygen saturation levels were low, even for her. Liz had said she was going to tell the doctor to see her first and then to tell her to do the six minute walk. He didn't make her do it. She would have done worse than 6 weeks ago and she did pretty bad then. I explained to him her symptoms and how ever since she stop the Tyvaso she has felt bad. She was squeezed in for an echo which he said showed no sign of decline from the last one she had which was earlier this year. He said that he is stumped as to why her symptoms are worsening. He told me to get her a chest x-ray next week just to rule out pneumonia since she has had some congestion. He also said that instead of every other syringe/pump change do an increase of medicine every syringe change.
I started the 2.5 mL vial yesterday so according to the pharmacist this will last 12 days. Since we will be doing an increase every two days this means it will only last for maybe 5 more pump changes. The pharmacy called during her doctor's appointment and I wasn't able to take the call. I was told earlier in the day that the pharmacy had gotten the authorization from Medicaid for the 5 mL strength vial :). I know they will be getting that to me next week once I call them on Monday (which will be another long, busy day more for me than Nicole). I also have to compare the dosing chart that I have that tells me how much medicine to put in the syringe, what to set the pump at and how many nanograms of medicine it is and coordinate it to the 5 mL chart.
I'm hoping that this increase in medicine will start to make her feel better. Nicole tends to downplay everything but I know that something is bothering her when she has been quite grumpy which isn't like Nicole. Today she will start the battle of site pain which will probably last until for about 7- 10 days during which time she will be taking pain medication every six hours so it doesn't get too unbearable. Last night she started walking hunched over because of the pain and that will probably continue through the weekend so sitting is the best option for her. My prayer is that she won't have the pain but if she must it will be tolerable.
Yesterday when we were at the doctors, a lady who was there with her husband came over and asked me about Nicole portable oxygen concentrator. I answered her questions and she told me about her husband. She told Nicole how beautiful she was (which she is) and that she hoped that she would get better. Another lady who worked at the office saw us when Nicole was getting her echo and she said hi to me and wished my luck and blessing and seemed very nice. When we were done with the doctor the office had already closed. The doctor pushed Nicole in a wheelchair out into the waiting room as my husband was coming from work to pick us up. The same lady that I saw earlier outside of the echo room came out and told the doctor that she would make sure we got out of the building when Rick got their. She stayed with us and talked to Nicole and I. She said that she knew the doctor would do everything he could for her and she was in good hands. She asked if we had been there before and I said "yes". She said she recognized Nicole. She also told Nicole how pretty she was.
While we were waiting for the doctor to read the echo a friend called me. This person we only know because of Nicole's illness. She had a dinner for us and wanted to drop it off as she knew we had had a long day. She has done so much for me and especially Nicole and for that I am forever grateful. I am forever grateful for her doctor who has also gone above and beyond to help Nicole.
It is very difficult to watch Nicole be so ill, but I am no different or more special than any other parent who has a seriously ill child. It saddens me to watch Nicole some days only focus on her illness and how bad she feels and how hard her life is instead of all the blessings she does have. Nicole doesn't complain but I can see it through her attitude and anxiety. She is beautiful, sweet, kind, intelligent, a very gifted artist and has people who really care about her. I know she is mad at God for letting her be born sick (her congenital heart defect) and doesn't understand. I try to tell her that in some ways she is more special because not every teenager could go through what she does every day. She is an inspiration and some day I hope that she will see that.
Subscribe to:
Comments (Atom)