and the journey continues….

I have been blogging about my daughter’s health conditions and her journey’s for quite some time. I don’t have a very big following but that is ok. I am good with whatever comes as it makes me feel good to share her, our journey. It helps me to speak about things, hear it for myself and I enjoy writing sometimes.

While everyone all over the internet is going crazy talking politics, I am mostly quietly sitting in my daughter’s hospital room. I am likely to be doing something for or with my daughter or chatting with our hospital family as I call them. This staff of amazing people that truly continues to grow. This admission has been 10 days so far or maybe it is 11 I can’t even be sure. We have very high hopes of discharge tomorrow and very much looking to be home.

We initially went into the hospital for stomach and back pain and throwing up. She is now 8 months post Kidney Transplant and is having some complications. She has BK virus, which I have written about if you would like to know more, Somehow this particular virus likes transplanted kidneys. It is trying to take over but the doctors are like, nah we are really not going for that. So they have done a few things to try to get it to go away but it is still there and putting up its fight. It is quite likely they will reduce, stop or change what little anti-rejection medication she is still currently taking. With this many things can happen, what we would hope for is that her immune system would increase on its own. We would hope that her body would fight it off. If this does not happen there are not too many options and it is likely it will damage the kidney. I have learned from other families that they have experienced this and the kidney is still hanging on, they just have a lot of complications.

During this admission she has undergone, 3 ivs at least 15 blood draws from all up and down her hands and arms,  She got two shots of pain medication before she could even get an iv placed, she has had kidney ultrasound, and nephrostogram and stent removal and replacement. She has had x-rays to her stomach, a head MRI cultures of everything they could culture and finally the gastric emptying study.

I will hope for the best and understand it is not in my control. I can only do what is best for her and let her have fun and enjoy life.

We found a source of her stomach issues by doing a gastric emptying study. It took about 5 hours, she had to eat some scrambled eggs with some radioactive stuff in it and then take x-rays one time an hour starting 5 minutes after eating. This shows how quickly the food digests and looks like it is very very slow way more than normal. They are going to add a medication to see if it can help with that. Should resolve the stomach pain as long as she is not throwing up or anything else that has been on and off for a little while now.

I am pretty sure she is heading on the other side of this urine infection that she has. She is getting annoyed being in the hospital and when she does not feel good she does not want to be at home wondering if she will go to the hospital she would rather just go. So when she starts feeling better she looks forward to coming home. I decided to come home tonight as it was midnight and I just need to sleep in my bed. I have two knees that need replacing and some joint pain throughout my body and I can do 2 nights in a row but the third night if she is well I come home.The chairs that open are tolerable but the older I get the harder they are to sleep in.  She is 12 and totally has a blast with the nurses when I am not there. Some of the nurse’s and tech’s have cared for her since she was a baby. The interventional radiology department , knows her so well that they sedate her for procedures quite regularly and they are on first name basis’ and she is totally comfortable in their care. She has nurses that just come in the room to get hugs from her , just because. That is the amazing part of this whole journey. It is about the love. The people who come to work to survive their own lives and actually work diligently to save other people’s lives. It is beautiful and amazing and rarely appreciated.

Social Work, worries about paperwork. Make sure you have all of your papers in order. Make sure everything signed. I know they do this to protect the hospital and the patient so I follow formalities. The Doctor’s order tests and work on figuring out the sources of the symptoms. The nurses try their hardest to follow every procedure and always hoping for the best outcome, knowing that sometimes it is going to hurt the patient or maybe scare them. They have to put up with the personalities of the patients, families, doctors , techs,  and other personal , it is so much to do with each patient having constant needs and they get it done, and they show compassion almost all the time. My daughter knows the housekeeping staff, the dietary staff the lady who sits in the front desk information,She is buddies with child-life, she knows the people in admissions and the transporter people and they all do their jobs with the intention of making that hospital a place people can feel confident to trust them when they are already vulnerable.

I am truly thankful for these people I just spoke about but I am also thankful for the experience. I have learned about compassion and empathy and how they interact and are not the same. I have learned strength and vulnerability and I have learned just how far a little information can comfort a racing mind.

I will continue to share bits and pieces of my daughter’s journeys and of other things I decide to write about and I hope somehow sharing her ups and downs along this thing called life, that somehow it will make it a little better to go through. Perhaps her strength will be someone else’s rope when they are falling down and need help back up.

 

 

Her strength will brighten the saddest days

It is now 2 days before the 6 month mark of my daughter receiving her Kidney Transplant. It was a very long time coming and you can’t even imagine the emotion that goes along with it. The joy, the excitement the unknown, the fear, the realization and that is just some of it. As a parent who is been through an enormous amount of life changing events throughout my not so long yet life. I am quickly approaching 45. In the beginning of this journey with my daughter her Kidney disease was just a part of her very complicated little life. She has VATER Syndrome. This is actually an acronym for some anomalies that seem go together in similar way when a child has a Neural Tube defect. Many times this results in Spina Bifida, which has 4 different types 2 of them being non important life factors. For the most part people don’t even know they have it. They may have a dimple in a certain spot on their back that will signify that they have what they call Spina Bifida Occulta. My daughter has that and so much more. Back the the Acronym the refers to the non-random co-occurrence of birth defects Vertebral anomalies, Anal atresia, Cardiac defects, Tracheoesophageal fistula and/or Esophageal atresia, Renal and  Radial anomalies and Limb defects. There are many variables and depending on the doctor reading her scans they will refer to her condition as Sacral Agenesis or Caudal Regression. Recently I saw Sacral Dysgenesis, whatever that means. I have tried to look it up and it only refers me back to the words I have learned along the way.

My daughter has the V the A the C and the R for Renal, she also has other issues that are all part of it like the fact  that she does not have a bladder or what she has is not functional. It has not been known if in fact she has a uterus so I suppose as she develops that will either become apparent or not.Some of her Cardiac issues have been resolved just about one year ago this month when they corrected her WPW(Wolfe Parkinson White syndrome) Her Renal issues have been attended to her entire life, she was on Hemo-Dialysis for just about 8 years, during that time she had a failed kidney transplant when she was 5 years old. I have written about that before in some of my other posts if you would like to hear more about that. When she was 1 day old she had surgery to create a colostomy as she had nowhere to release her bowels, it was mixing with her twisted up insides causing it to come out in her urine. She had several reconstructive surgeries and eventually when she was 4 she had the colostomy reversed. I always knew the issues with her spine where complicated. I always focused on what was the immediate need for her to survive and be ok , that has always been the Kidney issues and dialysis, that became our lives and just yesterday we got lucky enough to run into one of our very favorite dialysis nurses and visit for a few minutes. When your life is a complicated as my daughters you see what brings out the best and worst in people. She has shown me the best in so many people.

I laugh sometimes as we walk through the hallways in the hospital of how many people know us. How many people wish my daughter well on a regular basis. How many people do we have the same conversations with Have a nice weekend see you next Tuesday and so on. It is truly amazing that this little tiny just turned 12 year old can worm her way into people’s hearts. I hear stories all the time, I remember when she was 2 or 3 and she had the Pink Birthday party, or I remember when she was NPO(nothing by mouth-belly rest) for weeks on end and would cry for water or any of the so many things that went on in the hospital over the years. We get a lot of I remember when your Daddy was alive and he used to bring you , you look just like him and well basically what I am getting at is the only people who truly know and understand what our lives are about have interacted with us in that hospital.

Now that it is 6 months Post Kidney  Transplant we are ready to start moving forward with some of her other health issues. I am waiting on a call from the surgeon’s office of when they are going to remove her Dialysis Catheter. This has been a part of her since she was just 4 years old. A tiny little thing with a line that can not get wet. She has spent her entire childhood in Florida not swimming, bathing with saran wrap as to not let that part of her body get wet as it was truly her lifeline. That line has been babied as we know how easy infection can set in a that is life threatening when you need that access to live. Over the years we did take a chance here and there one time we got the doctors to give us giant tagaderm’s and we tried cover it and go to the water park. We had a blast but it did not work out and we only stayed a short time. Once we got home had to change everything which is a  sterile procedure. I am trained to do this but I struggle so bad with getting the gloves on without getting un-sterile. Luckily nothing happened. As far as I understand it , this will be outpatient surgery. As she has had the same access spot the entire time she was on dialysis(lines changed out over wire) there is likely a lot of scar tissue so even though it’s nothing compared to her many other surgeries it is probably going to hurt or be sore a few days.

In about 4 more weeks we go back to see her Neurosurgeon that will be doing her next spinal surgery her tethered cord. That should likely be scheduled during that appointment. This surgery can not be done in our Hospital. They prefer to do this one in the other local hospital as they have a specific laser there that is the preferred tool I guess. This will be the 3rd time she is having this procedure. Last time she had it done the day after her father had a brain biopsy that resulted in Glioblastoma Brain cancer. The most aggressive kind of tumor. This was a very difficult time for our family and the details of her pain after seem to have escaped me. I remember the first two days she was in extreme pain and did not want to move at all. Then on the 4th day she popped up in the hospital bed and wanted to play with makeup. She came home on the 5th day using a wheelchair for about 2 weeks. I remember the day they both came home from the hospital. I remember her crying most of the way home and then the next two weeks are a blur.  We met the cancer doctors for my husband they stated this was terminal and his time could be days to weeks, he survived 9 months. Losing their Dad affected all three of the kids differently. For the girls they lost their biggest fan. He was Dad and for all intent purposes they lost a huge part of their support system. The older two seem to prefer not to talk about him at all it just makes them sad.  Currently we live on the second floor and we are working on transferring apartments so that after her surgery it will not be so hard for her. Moving is a huge hassle under the best circumstances but we have no resources. We have no finances at all. I recently lost my job and quite frankly my little girl needs me right now so I am in an impossible situation. We already live in an income restricted apartment complex and we are doing our best to live on as little as possible. I am sure that somehow we will figure it out. We will find a way to get our stuff moved and all will be as it is meant to be. I just have to pre worry because that is what I do best.

I can’t say that I am not concerned about this surgery, I just know what to expect more or less and now that she does not need dialysis anymore I can be confident that doing this in the other hospital will go smoothly. They did her heart surgery there and my Dad’s pacemaker and both went as expected. Well my Dad is becoming complicated but in any event the hospital did what you want them to do and they were nice to both of them so we will go into it with positive thoughts and know that Dr. G has been on the cover of magazines as a top pediatric neurosurgeon. She has done this surgery many many times and she has been involved in my daughters healthcare for most of her life. She was not the surgeon who did it the first time but she was part of their practice.

I am actually  a lot more concerned with the next two surgeries. We have to make an appointment with Urology. Currently she has a Urostomy because she has no functioning bladder. Although it is nice to see her urine output (since she never peed when she had no kidney) I would prefer if she could have that in the inside like most of the rest of us. She is just a little girl and having a big bag attached to her is not that comfortable. She does make the best of it and is very excited to know that they make swimsuits to hold the bag in place so that she can actually learn to enjoy summer activities without of the constant stare from people who will inevitably look at her and make her feel uncomfortable. After they take her line out in the next few days, we will be shopping for that suit just so she can go to the pool and not just sit out and tan for a bit. Now we take a book and sit out at the pool sometimes just because it’s part of our community and we don’t like always being inside.  The Urologist will be planning to do some type of bladder augmentation as soon as she is medically cleared to do this. Because it is dealing with her new kidney the rule was nothing for at least 6 months so at 6 months we make the appointment and start figuring it out. My guess is it will involved some type of exploratory surgery first, but with technology it may just pictures and scans to figure out their next move. I was hoping her pediatric surgeon would be the one to make these calls as he is the one reconstructed everything for her. I guess I just have learned to admire his expertise and believe that his guidance has always come in agreeance with Nephrology and they have been boss when it comes to her overall health care.  I am not sure when these surgeries will take place and I don’t know if they will come before or after her second spinal surgery.

The other Neurosurgeon involved in her healthcare is for her Scoliosis issues. Her curvature is around 63 degrees right now. In most instances doctors intervene in the 30’s some where. If possible they use braces if not surgery is required. In my daughter’s case her spine is so twisted that it is actually moving her rib cage and causing all kind of problems that will continue to get worse and could kill her if we don’t act. They are going to use stabilizing grow rods for now this will probably be sometime in place for about 2-3 years depending on how much she grows. Children with poor or no renal function do not produce the hormones that make them grow. In my daughter’s case we used growth replacement hormone shots for about 6 years they truly helped as she is about 4′ 4 now and that is small for a 12 year old but she probably would have been 3 foot something with out them. It is not likely she will grow to 5 foot but we will keep our hopes up anyway. In a couple of years she will need some serious spinal fusions to correct this curve and twist stuff she has going on.  All of this and that is what we know of never mind what we don’t know of.

My daughter has shown that she is just like every other kid only way more complicated. She likes to read, watch tv, play games, go for walks, go to shows and paint and do arts and crafts and play with friends just like any other kid. She also does typical kid things, mumble under her breath, say sarcastic comments when not getting her way and fussing with her cousins or brother. Someone is always trying to get someone else in trouble and they  do what typical cousins do, fight and argue and play and laugh and fight and argue. Although she has all these health issues today she is looking forward to going to the mall and spending her birthday gift card to her favorite store Hot Topic. She needs a really cool rock and roll t-shirt as she is going to her first real concert in a real theater in 4 more weeks.  She loves music and has been to some concerts at the park type events but this is going to be much more grown up and she can’t wait.

With all that is coming up this year, I have some serious decisions to make for myself. I have been trying to lose weight for quite some time. Part of the problem is I was so stressed out that I was not paying attention to diet. The last year of my husband’s life was complicated. Finding time to cook was just about never and he only wanted to eat fast food. (it has been proven that people with that cancer all do the same thing, eat mostly sandwiches and fast food) (probably because it is easy and does not require use of utensils) During that time, I was going back in forth 45 minutes each way to the hospital two or three times a day. Dialysis, Radiation and sometimes appointments. One day while getting ready for work I slipped on the mat out front and hurt my knee. I did not know that that I tore the meniscus after three months of suffering I finally saw a doctor, did an mri and had surgery. My husband’s illness got worse during that time and he lost the ability to use his whole left side. He could barely see or walk but he was a very energetic person and fought it with everything he had. This resulted in several falls and me and the kids would struggle to get him back up. This did not help my knee and eventually the other one wound up in the same if not worse  as the other. Over time I have had surgery on both of the knees and my right knee is shot, Doc told me just earlier this week that I need a knee replacement but due to my age insurance will not pay so basically I will be in pain for the next so many years. Being poor sucks, having crappy insurance sucks but no matter the downfalls, My daughter needs me. Having only one parent left she(my other kids need to know also but they are older and have different needs and understandings) needs to know that her needs are priority to me and that I will be there for her as long as life permits. Yes I would like a nice home, a nice car and money in my pocket to do regular normal things but the reality is she can’t do for herself right now so whatever anyone thinks or does not think is not really our problem. as long as we can keep the necessities we will find our way. So between the depression and the knee my metabolism went down to its slowest possible. I was sedentary and not eating well for far too long. Now I am consciously eating better, consciously exercising and hoping that this weight will eventually be a burden of the past.

I am hoping that during this upcoming year, that my daughters surgeries are not only a success but that they don’t bring her any undue harm. I have seen both sides of the way all of this stuff can go and I will just continue to think positive thoughts as to not screw with the JuJu as my old boss would have said. It has been a while since I updated anyone on my daughter’s health. Her blood work amazes me. Her Parathyroid problems are gone, her lab work looks as perfect as can be considering her bodies very complicated way. Thank you all for always sending positive thoughts our way and let’s hope that we figure out a way to make it all work out.

My daughter’s condition is considered rare but over the years we have found a few online support type groups and sometimes we learn from other families and sometimes they learn from us. If you are interested in learning more about her health or simply like hearing about our journey’s please feel free to read my other posts and if you are part of the wordpress community please feel free to follow me.

https://lisabarriera.wordpress.com/

 

 

 

 

Another Gift from Beyond….

Yesterday was a pretty good day. I went to dialysis in the morning with my daughter. It was a fairly smooth treatment for her. She did not get sick at all or feel bad and she was giggling listening to videos with her headphones on for most of her treatment. I sat chatting with the older kids and the nurses and took care of a few phone calls I needed to make. My Dad had told me the other night on the phone that he needed to talk to me but it was not a conversation for the phone. I thought one of three things,see my Dad will be 80 this year. My Mother Passed away 15 years ago next month. The three things I thought was Oh My I hope he doesn’t tell me anything worse with his health, Possibly he wants to take my son shopping for school cloths.(this was a tradition of my Mom’s and Dad took over when she passed, All the Grand’s get new school cloths from her) or I was in trouble for spending something I was not supposed to and he knows about it. See I am not working due to several things, one my husband passed last August and he was the one who took our daughter to her treatments and appointments and I worked full time, Two I just had knee surgery two weeks ago and prior to that I could not walk for the last 7 months and three I can’t find anyone who is willing to hire me and work around my schedule and need to sit down at work. So that being said we are living on a budget that is smaller than our lives. For a while I had some money that was left to my from my Uncle and that was helping and then my Dad helps with everything else. It is a crappy situation for me and him. I wish I could figure a way out of it and I am hoping this surgery heals soon enough to help at least the standing part of the situation.

Well I was wrong all around. None of the three things I thought came to play at all. My Dad come over, It was a really bad thunderstorm and we sat and chatted while my kids acted like kids(they are way too old, 22,15,11) but they were having fun and really getting on Grandpa’s nerves. He can’t tolerate their immature conversations and the noise is also bothers him. Well after the big one went off with her boyfriend and the TV lost our interest we decided to go out to Lunch. Funny the kids were being annoying but he said on the phone OK we will get lunch, now it was 4 in the afternoon and they were starving and he was saying well guys, your big kids you can go in the kitchen and find something to eat. Well eventually he remembered and just He and I and the little one went out. It was a great lunch/dinner but the place was freezing cold. None the less when we pulled up back home I said Daddy are you coming in?(see he never told me why he wanted to see me in person) He reached into his pocket and said you know this is kind of late. See your Mother wanted you to have this, A beautiful gold bracelet, it is heavy gold and probably has some value. He had two of them they were slightly different. He said one was your mothers, and one your grandmothers, I no longer remember who’s was who’s but she wanted you to have it and she wanted your sister to have the other. I am guessing my other sister probably got something too but since she lives with him now he probably gave to her a long time ago. My Dad worries with my financial situation I will feel desperate to buy my kids something and pawn it. He knows me and knows that anything materialistic nice but I really don’t care about it one way or another. But what he does not know is I cherish every little thing they give me. I still keep an old broken ashtray from a incents thing he brought back from a trip years ago, I still have my Mom’s locket she gave me years ago, I still have all my kids first’s so many things and I am quite sentimental about these things. I have old curtains I will never hang nor will I ever get rid of just cause my Mom gave me them after she died. My sister makes fun of me how I word it but when she passed over the next three years my Dad slowly gave me little items that she picked up along the way, he would always say oh your Mother bought this a long time ago and here so I would tell my sister’s ha ha Mommy gave me another present. So not only did I get this awesome bracelet that will look very nice when I do ever get job interviews or have opportunity to go somewhere nice, I have another piece of my Mom or Grandma. Then the bigger top it off is My Uncle. My Uncle never had kids. He was my Dad’s younger brother and growing up he was the favorite relative. He was funny and always told jokes, he was cool if he caught you doing something bad he would yell at you and make a deal I wont tell your parents if this is the last time. He caught me with my first beer, first cigarette, and first joint. He never got mad just a little yell and lecture only one time I yelled at my mother and I had to hear it for a long time. Well this Uncle not only was a really cool guy he was very generous. He would rather give you his stuff if getting new, this has come from stereo hand me downs to cars to any thing you can imagine. Currently,half of my home is furnished in things he either gave me or left to me when he passed. He always split it between me and my sisters but they swore I got the better end because I was the youngest. Who know’s when he passed it was the worst. When my mother passed my uncle filled that void for my Dad, he was not in the best of health and gave my Dad lot’s of opportunity to hang out and go places together. He always loved having all of us over to swim and have bbqs he could no longer get out of his wheel chair the last few years but he was fun to play dominoes with and have a few drinks or just hang out and shoot the shit. He was a cool old guy. My whole family adored him. Well back to the story. My Uncle was fighting a law suit. I have no idea what it was for. When he got sicker and sicker and transferred everything to my Dad and had and attorney deal with all his stuff. My uncle was Smart and he made some investments which he left to my Dad and my Sisters and me. Well My Dad told me the lawsuit was lost a long time ago. I forgot all about it. Well it went back to court for and it was won There is some big settlement coming. My Dad said he did not want to hurt my feelings when my sisters get their cut and I don’t get mine. He said that he is going to keep it like a bank account and he will pay my bills and I can actually try to live off the little money I am getting. It sounds like he is treating me like a baby but he is not. My kids are used to me bringing home 800 bucks a week and money not really being an issue.Now we live on 700 bucks a month and its very hard on me as I am feeling like crap about having no money ever. So now I can worry less. When I want to buy a new mop or get my kids hair cut its not going to be begging my Dad, I will just tell him at the beginning of the month which bills and the amounts and if I need more I will tell him. This should keep me going while I figure out my other knee and heal and find work again. I wont be doing good and I wont be out shopping and spending money and having fun but I will be taken care of and that is beyond amazing. So yeah , I have a really cool Mom she might be dead and all but she is very much still giving me gifts, I will cherish that bracelet forever. I have a really cool Uncle too. I can close my eyes and picture my life with out everything he has taught me and given me and my life would be crap with out it. So yup even though my Uncle might be dead too he continues to give me gifts from the beyond also….

So with all the bullshit I have been dealt in life, I also have been dealt some really cool, amazing and generous people in my life and their words, thoughts and actions have molded me into me. For that I am extremely thankful.