Team Angel- 1st of series…

I have written before about my Daugher Angel and have shared some of our lives. Thingscontinue to be complicated with my girl. She is now 12 but she is turning the corner towards 13, as she adorably tells me. In the past 2-3 years my family has been through a lot of change and we are trying to work towards what will be normal. When we get there it will be time for my son to head off to college I hope or whatever is going to be his future. My oldest daughter is 23 and lives on her own now.

Just about 3 years ago we were moving out of the house we had lived in for 8-9 years. We were moving to a totally new neighborhood to a better house and schools. No sooner did we move into that house than we found out my husband had Terminal Brain Cancer. We went from finding out about this disease and watching this disease eat him alive. I could actually write an entire series about my relationship with him. He was something else I used to call him Shenanigans as he was always involved in something. Building this, moving that, fixing this, breaking that. He was a good spirited man who had a lifetime filled with mind damaging emotional baggages. He fought through his life by outweighing the bad with the good. Somehow he stole my heart with his unique ways and truly fun to be around. During the time he was sick only parts of our lives could be altered. Angel still needed to go to dialysis and take care of her medical needs. She had Spinal surgery( the same one she just had 4 weeks ago today) the day after her Dad had a brain biopsy. There were 6 weeks where I would take Angel to Dialysis get her hooked up, drive home 45 minutes and get him and my oldest daughter who would take care of him and get him ready, off to radiation then we would usually all go home together, unless one of them needed to be admitted and then my oldest and I took turns driving back and forth taking care of everyone.

He passed on 9 months after diagnosis. Angel went to dialysis the next day. Some people think so what it is routine for her she has been doing this since she was 4 years old. Dialysis is not routine, you make it part of your routine. Any day, any treatment can go from relaxed and laughing to throwing up, or getting fever. Can go from feeling great to needing fluids, because you are crashing. It is a toll on the patient seeing their blood go in and out of them for 3-4 hours, Angel was on 4. It is also difficult on the family members who go with them. They have to hope for good days, hope there is no problems with the machines, or the water, or your access. Then your 4-5 hour day turns much longer. Angel went to dialysis the next day. We came in the afternoon instead of our normal morning the nurses said it will be quieter and be better for her to not be forced to deal with others so quickly. Her dialysis center is her comfort zone. She has grown up there and has been loved by the nurses, taught by the nurses, teased by the nurses and nurtured by them. They have been the same team for a long time and each brings different personality and experience to the unit. It makes for good outcomes during treatments, they notice something is off sometimes before the patient themselves. They also know the I have a tummy ache please play with me to the real let’s call the doctor pains. It is a comfort zone that only a person who experiences should know when they are among good people.

So back to Angel 5 months ago we were told that Angel has the BK virus. This is a virus a lot of people carry. It is likely it came with her transplanted kidney. She has not been able to beat this virus. They have taken her off this medication, started her on that and so on. It came down to Infusions every two weeks. During that time she caught many urinary infections. She was running low grade fevers on and off and something was not right. She was admitted many times. Each time the stay was about 10 days. She had the first of her spinal surgeries. Although there was complication during surgery she seems to be better from that each day.  2 weeks ago she was admitted to the hospital with terrible stomach pains, low fevers, throwing up on and off, no appetite and non consolable kind of pain. Once we got to the day hospital , the pharmacist who knows us for a very long time said, called the doctor immediately when he heard her cries. He said Dr. P, this is not Angel she does not cry like this. It took 10 days or so to figure out what is truly wrong with her, so much tests. So many things ruled out. We finally got a diagnosis. No wonder she is screaming in pain her native kidney is filled with cysts and totally infected. So now we have a source but what do we do about it. She is still with fevers and terrible pain so how do we proceed. Infectious disease is helping with antibiotics and surgery has weighed in on the we don’t want to take it out. They have already done the following surgeries on that area of her body:

Colostomy

2 Reconstructive surgeries

Colostomy reversal

Kidney  Transplant

Kidney transplant removed

Kidney transplant and Urostomy placed.

She has had many other surgeries but they were on the other side or her back or other body parts.

So now for them to go back in and take out that infected kidney is going to be very hard on Angel and very hard on the surgeon. They will do what they have to for Angel but what does it mean for her health. On Wednesday we will re-evaluate blood tests, inflammatory markers and something else and then a plan will be formed from there.

My daughter is one tough kid and she is no crybaby. They wake her up for blood work and she just fusses about the light coming on. When it is time for meds the most she will do is grunt and sit up. When she is feeling good we go for walks, if she is hungry which is not often I get her whatever I can that she likes. If she wants to play or do arts and crafts we do it but a very good part of the time she sleeps. She likes when the family comes to visit it makes her feel like she has people pulling for her.

She has been really surprised this admission with all the terrible pain and all the crap she has gone through, she has had some good come with it. She won a school raffle and won an IPAD Mini with a case, headphones and an Itunes card. That was so awesome for her she is loving it. Also a friend of ours did a fundraiser with the company she works for and they get her a new outfit and a donation that will be coming. Not only was it something fun to be part of it made her feel loved. People that know her people that don’t were sending her messages.

So hopefully wednesday we will get a good plan. It breaks my heart listening to her cry in pain all night. Some nurses are wonderful and know to have the meds ready that she calls out every so many hours and  others want to go through the process when she is already screaming in pain. I know some people will follow all rules but when in Peds, the rule are meant to be broken when it comes to pain management and comfort.

Today was the first day that she attended Teleclass in over 2 weeks and she was hoping her teacher would come down and see her today also, although it is not a scheduled day.She gave me the greenlight to come home, grocery shop for my son and shower and come back. I am cheating taking a little me time to write. I am glad I can type quick 🙂 .

 

Check back for updates about Angel

if interested you can follow her story on Facebook

https://www.facebook.com/teamangelraye/?fref=ts

 

#teamangel

 

 

 

 

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.

 

 

BK Virus and Kidney Transplants

My daughter received a kidney transplant in 12/2015. She is now 12 years old and she was on dialysis for 8 years prior to receiving her transplant. She has other health issues, besides her kidney disease and it was a combination of reasons that she needed to wait that many years for a transplant. We knew going into it that Kidney Transplant is another treatment option. One of our dialysis nurses constantly reminded us of that. I did not completely understand why until now. She  wanted us to be prepared that although some things will get better others may not. She also saw other patients go through different battles and all of them did not have the best outcomes. Being a medical professional is not simply having the job of hooking someone to a machine, or taking blood or performing a surgery. It is so much more, it is learning to help people understand it all, help people accept it and so many other comforting things that just go along with most compassionate people. I have watched a nurse love my daughter back to health.

My daughter had a failed transplant when she was 5 she was one year on dialysis and all the signs showed it was a great time for her to receive a transplant. We all tested to see if any of our family members could be a live donor. This was not the case and she went on the National Donor List. She received the kidney, surgery went great, first night went great and then the urine output slowed down. Then she stopped breathing then came intubation and a very long recovery. During that time the kidney failed and she wound up in a medically induced coma to try to heal her. She had surgery they removed the failing kidney and back on dialysis she went. During that time one of her dialysis nurses came daily to give her dialysis and she would read to her, love on her, talk to her and pray for her. She not only did her job but she went miles above it. That was the only time her Dad and I would feel comfortable to go home together, shower and pay a little attention to our other children and family things that needed to be done like laundry every now and again and giving the other kids some kind of stability. Luckily for us our kids are amazing and they took care of cooking and cleaning and going to school and just doing what they would do if we were home. We were fortunate in those ways.

After the failed transplant, her Dad and I told everyone we will go to dialysis as long as needed or forever to not ever see our daughter like that. She was truly suffering and we very easily could have lost her. We did not and we gladly went to dialysis for years. About 5 years later the doctors started talking transplant again. We told them we will make ourselves ready when you believe she is healthy enough. They did testing each year until they decided it was time. They saw it was time right around the time we found out about her Dad’s health failing him, he was diagnosed with terminal Brain Cancer and I was not mentally prepared to watch his life go and then risk a repeat of the first kidney transplant. I told her doctors my concerns and they agreed that I needed to be prepared so that I could continue to be her caregiver and support.

About 1 year after my husband passed on, the doctors approached me again. They said that health wise she is ready for another transplant. Some of the issues with being on dialysis for so long was becoming obvious and moving forward to transplant was what was best. They also told us that since her age, the amount of time she has been on dialysis and the list and the amount of health issues she is having she will go to the top of the list, not first as she was still doing ok with dialysis but the top meaning could get a call same day they activate. We joked and said that won’t happen we are moving in two months, we will get the call five minutes after we get our moving truck. Well we were close, we got the call the night before, it did not work out the kidney was not healthy enough. We went home , went to dialysis in the morning and prepared to move that afternoon. We moved went to sleep and 5 in the morning we got the call again.Transplant went great, Kidney started working right away and we did not experience any issues that we dealt with the first time. This time we saw what successful transplant was all about.

We followed strict lab schedules and medicines. On time without fail everyday. Followed rules, drink tons of water!!! We did and continue to do what our doctors recommend. After the first month they did Viral Studies through blood and urine tests. They found she has the BK Virus, which is the number one reason for loss of a transplanted kidney(graft). At first it was not high in her blood and was just high in her urine. Then it started creeping up in her blood also. They reduced one of her Anti-Rejection meds, Then eventually they took her off of it. Then she started having dark and bloody urine. She spent about a week in the hospital and she wound up having angioplasty and a stent placement in her Ureter.

On this past Friday she went in for Labs. I was waiting all afternoon to hear about her lab work, of course  hoping for the best. I did not hear so I said that is probably good news, but I left a message anyway. On Monday I waited to see if they would call but they did not. Now I  said one of two things, they are totally slammed with kids that need more attention right now or they are deciding what direction they want to go with something. Yesterday I got a call from the transplant coordinator, I missed the call but her message was that she was still trying to get some information from the doctors and that she would call me in the morning. This morning came and I got a call from her Doctor. The BK is higher in her blood. Even though they took her off the one anti rejection and reduced the other and had strong antibiotics it did not boost her own immune system enough to reduce this viral load. So now tomorrow we will go to the hospital in the morning for labs, iv fluids and a medicine that will hopefully attack the virus and then more iv fluids. This medicine is pretty much a last resort at fighting this virus. This medication is also toxic to the new kidney. We will of course keep positive and hope that somehow she beats the odds, knocks out the virus and keeps the kidney. But reality has already set it that that might be the case and she can very well lose the kidney. I would love to hide in my room and cry right now but that will just scare her and right now she totally understands it that one way or another we will fight it with everything we have but we are not guaranteed a win.

On a good side though, she was approached by an organization called a second wish, my daugher was approached by Make a Wish when she was very little. She was granted a wish when she was 3. We went to Give kids the world and it was amazing, Sadly she was way to young and does not remember a thing. We have pictures and I try to show her and spark a memory but that does not happen. Well we met with the founder of this organization and she was amazing. My daughter wished to go to New York, She wants to shop, and go to shows and or museums and parks and she wants to meet her Big sister from her Dad that she has never actually met in person. We have this crazy relationship on the phone, computer and text but situations have not allowed us to be together in person. This wonderful lady is putting together this trip that surely will be a highlight of her childhood. So with all the good comes bad and with all the bad comes good.

I am hoping tomorrow goes smoothly and that this medicine does not make her feel like crap. Doc said it should not, hoping it all goes ok and that her kidney finds a happy balance. But no matter what the outcome she will have me and her brother and sister and other family members that adore her and will do whatever to make her at peace with whatever her body does.

Kidney Transplant is simply a treatment option

When it comes to talking about my daughter’s health, the words come easily. She is complicated at best and if you read my other posts you can learn a lot about her. She is now 12 years old and just about 7 months post Kidney Transplant. Everyone just assumes that since she got a kidney everything is better. She is no longer in need of dialysis treatments but she is certainly not out of danger. Her health has improved but she is far from healthy.

The first few weeks labs were required twice a week and have now dwindled down to every 2-3 weeks. During one of her very first set of labs we found out that she has a virus called the BK virus. Apparently this particular virus can lay dormant or can creep up and attack the kidney. It has been the most likely cause of a transplant patient losing the kidney. Rejection of course is another huge concern as it can happen at any time. For this virus to become a troublemaker it must be in the blood and urine. For a while it was just in her urine and they went to half dose of one of her anti-rejection medicines. Going down on the medicine allows for her own immune system to pick up and hopefully knock down the virus. This was working for a while. It has now come to our attention that it is back in the blood and urine so they had to stop that anti-rejection medicine all together. She is still on one so hopefully her body won’t start to attack her new(and very loved) kidney.

This past Saturday morning she woke up and said her urine smelled terrible and that it was a bit cloudy. As she has a Urostomy it is very easy for me to monitor color, clarity and volume. I told her to drink more water and see what happens. We were fortunate enough to get tickets to see a Major League baseball game and the seats were what they call Field box as they were right on the field in front of First base. My daughter really wanted to go to the game as we already made plans with my sister and my nephew(from either side of the family) I told her to keep drinking and since it was an inside ballpark being overheated was not an issue, we decided to see how the day went and call the doctor when we got home , if need be. When we got home she said Mom I did not want to complain but I am having some pain and my urine looks a little pink. We decided that we would empty it, change her ostomy bag make sure that there was not a little cut or something that would easily explain this pink color. Everything looked really good so we called the on call doctor. He stated to take extra fluids and re-evaluate in the morning. In the morning there was more blood and it was obvious sometime was not right. I called doctor again and he again told me to keep her hydrated and to call him if a fever developed. I really did not like the answer but I figured she was to see her doctor the two days later.

Without fever and the blood coming and going it did appear it was not an infection. We toughed it out until yesterday when we saw her doctor and she did full lab work and urine tests. She confirmed no infection but of course sent off for cultures which sometimes take days to grow. She is concerned but so far has not told us the next course of action. This morning there was blood again and now she fell asleep complaining of pain. She is not running a fever so I will wait until the morning but tomorrow for sure I will bring her in as they need to do an ultrasound of that kidney. I have tried to learn what could be causing this but truly I need to stop confronting Dr. Google.

A transplant is a great treatment option as quality of life can surely be improved, not being held down to diet and fluid restriction, not being tied down to a machine 3 times a week and all the other things that go along with being on dialysis. But, the truth is a transplant can be just as scary. Each and every day that she thrives is a true blessing and the days that don’t go so well are just reminders of how delicate life can be.

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/

 

 

 

 

Sunday mornings random thoughts…

When I wake up feeling pretty good, I like to take advantage. I get up start my coffee, clean up the mess my son leaves overnight in the kitchen. If the weather and my knees permit, I like to go for a morning walk. I don’t like to walk in the heat or pouring rain. This morning was perfect. I got up and said wow it’s sunny and cold a perfect morning for a walk.

I grew up in New York. Long Island until I was 12 and then Queens. I was by nature a city girl. I love the excitement of it all and I most especially loved the people watching. My friends and I would go into “The City”(Manhattan) , go to Washington Square Park and people watch. I am sure we did more stuff but that is what my memories like to serve me.

With that being said I am the kind of person who say’s Good Morning, or Hi. I usually smile and go on about my business. I do not expect people that are random strangers to stop their lives to politely give me small talk. I do, however expect a simple return smile or a quick Hi.

Is that a lost way? Do people not say Hi to random strangers? Do they not start their day’s off looking for a way to have a good one? I am so confused. I walk past so many people on an everyday basis and I smile and say Hi to most of them. The ones I do not smile and say Hi to are the ones who never smile back. I have neighbors that walk down the stairs with me most mornings and won’t utter a Good Morning back. Now I choose to walk behind them so I don’t have to let them see the disappointment on my face. Why I allow this to disappoint me I have no clue. I just am friendly and kind and prefer to be around like minded people.

I have been told over and over what Rude people New Yorkers are. I am usually appalled by it. Perhaps it is just my own personal experiences. I really don’t know but I have been in Florida for 24 years now. I have yet to live in a neighborhood with friendly people. I have had friendly neighbors after I forced my friendliness on them. I am not aggressive by any means but I am persistent.

I really thought when I moved into my current apartment complex that I would meet some nice people. I thought there people here are basically in the same financial boat as me. Likely there are a lot of single parents as this is an income restricted complex. Boy was I wrong the people here are mostly rude. I just walked past two neighbors in the hallway that were so busy not saying Hi back that they damn near fell down the steps. I walked past a young girl, perhaps 14 or 15 I smiled and said Good Morning, Nice morning for a walk and she rolled her eyes at me.

I sure hope my experiences are limited and that there are still polite, friendly people walking this earth. Either way, I always see it this way. When I go to bed at night , I have no concern that I have brought anyone else any harm for that day. I feel like I did my best to be a good person and be nice and polite to people. So I don’t lose sleep over it, but it does sadden me to know that something a easy as a smile is something people even young people just don’t do. Perhaps they do it only in closed enviornments? Maybe their families have thought them that everyone is a stranger and horrible people so never smile , never be nice to random people? I don’t know but surely one thing I know I will keep being me. I will keep doing the same things I do and hopefully maybe just maybe it will rub off on others.

Part Two-It does not always work out…

Part 2

 

After 9 weeks in the Pediatric ICU, my daughter started to gain strength and start to heal. She was transferred to the floor where she immediately started going back to her regular self and was home with-in about 2 weeks time. We went back to our Dialysis and school routine. We were so happy for Dialysis and our daughter being alive and getting back to what was her normal. We told everyone we are happy to go to dialysis for as long as it takes for her to be healthy enough to try again.

In the end of the day Kidney Transplant is just a treatment for Kidney disease. It is not a cure. It does not come without risks or without worries. Kidney Transplant has ups and downs just like dialysis but it seems to have more ups. I saw several other children go through successful transplant and I did not understand why my little one had to endure so much. Why did she have to be born with all this extra crap, that believe me you would not want to wish on anyone. Why did she get a matching kidney and she not be able to tolerate it. The kidney transplant failed. She did not reject the kidney. As bad as all that was, not rejecting is good because that will affect the future less than if it did reject. So I guess that has to be the silver lining. Fast forward to today I will state the future is brighter in many ways and yes we are quite thankful that this past failure I am telling you about was not a rejection. A medical professional could explain it better but basically you have antibodies in your system and so will the donor. They have to work out or it will not be successful.

Several weeks after we were home from the hospital, we got back into our routines and we watched out family as everyone changed. Seeing your child on the verge of life and death and being completely powerless is lifechanging. That goes the same for your baby sister and that is what our kids were feeling, powerless to help their sister and afraid to hurt her when she got home.  Finally things were almost going in a good direction and I got laid off from my Job of almost 14 years. Now our family dynamics completely changed. My husband stayed home with the kids for many reasons. One was that I had a good job and with day care and such the difference of what he would bring in to what I was making was just about even for the most part. He had some specific issues that interfered with his ability to work certain jobs, although truthfully he was qualified for more than he believed in himself for. That is a story for another day. He qualified as a great Dad, up early in the morning, walk you to school or the bus stop, be back to pick you up the same with lunch or candy or  something fun more often than not. Discipline and rules were often bent to accommodate the needs of having a sister with a bunch of extra needs. I started going to dialysis regularly and my  husband started managing some apartments and we made ends meet. Not so great but well we got it done.

The truth is, although the little one has had all these health battles, you can hear our story and say wow or whatever you feel but the truth is this little girl is tough. She has been through it all you as long as she is dressed you would not know. You would not have a clue, until we told you or perhaps you noticed she is small for her age. Her brother became her hero. He would do everything for her to the point where  he would sacrifice his own fun for hers. But in a all reality he hung out with her all day, and was by her side but he was a brother, an annoying typical pick on you brother. Her sister bossed her around and yelled get out of my room just like any other sister does. So that was alway the good thing. She got treated like any other kid, but she did not of course, she had everything she could ever want that interested her at what ever age and everyone knew it. She had the entire staff at the hospital wrapped around her little fingers and she still does. They still tell stories of her many hospital stays the random things she would say and do. She is blessed to have gotten a perfect mix of the craziness of both of her parents. Mom (me) and Dad each have a crazy way about life, we beat to our own drums as people  say. She got the mix and that surely carries her with personality.

The years start passing and family members and hospital family would ask, when is she going back on the transplant list, its been 2 years, it’s been almost 4 years and we would answer , we don’t care whenever Dr. C say’s it’s time, then it will be time and not until then. We hoped and dreamed of a successful transplant for her but we just made dialysis a part of life and tried our best to live life , to the best of our ability. After about 4 years of being in dialysis the doctors decided it was time to start seeing if she has made any of the milestones they believed would make transplant successful. It took a long time and a lot of appointments to decide that it was not time. She was not ready. Success would not be a likely out come. We were ok with this. We knew at some point that would change. Another year or two past. This time when we started taking the different tests, things were starting to look better. Transplant did not seem so unlikely and it did not seem so far away.

The doctors asked me what do you think about putting her on the list. I stated that when he felt it is best then I will know time for me to feel the same way. We started to make certain goals and as we started to accomplish them we talked more and more about when she will truly be ready to be active on the list.

She needed spinal surgery and they decided would be good to have done before transplant. Less risks for infection after the transplant. We had surgery scheduled but it got cancelled. That is also another story for another day. Then we finally got the surgery scheduled again. We were looking forward to her healing from that surgery and then having those final talks about actually becoming active on the list. We scheduled the spinal surgery . Now it is about 6 years into dialysis. Everything is pretty routine for us. We got to have her spinal surgery. It had to be done in a different hospital. We wound up having to cancel the surgery and find a surgeon that would do the surgery at our hospital. This took about 6 months to accomplish, As they needed a special laser that our hospital does not have. Well they have it now and my daughter received her surgery.

During the days up to her spinal surgery my husband started having terrible headaches and vision problems. Looking back he was showing signs for much longer but of course hindsight is always 20/20. I brought him to the emergency room to find out his brain was totally swollen and bleeding. He was admitted, transferred hospitals twice. The day before her spinal surgery he had a brain biopsy. It was totally hectic having him being sick and her needing the surgery. Luckily we know some great people in the hospital and they did everything they could to help us manage this situation. The biopsy revealed he had Glioblastoma( a terminal brain cancer). We were told he would have 6 months to 2 years depending on how he responds to treatment. My daughter’s surgery went well and within a week or so they were both home.

Back to Dialysis, Started Radiation and Chemo it was a very hectic couple of months. Your family truly learns what hectic means when you have two people fighting major health issues. I tried to continue to work but it was difficult with taking them to appointments and caring for them both. He had 6 weeks of daily radiation and of course it was a 45 minute drive each way to the hospital so half the day was spent driving back and forth between their appointments.

Time was passing and the doctors really wanted to move forward with transplant proceedings. I was not ready. Emotionally there was no way for me to deal with the possibility it could all go just like the first time. Especially as our family had to face the fact that Dad’s life was coming close to an end. We did not back burner the transplant all together , we just push it away a bit. We continued to go to appointments, We made sure that we did all the tests we just did not push as far as becoming active on the list. My daughter made it to the top of the list in 2009 with her failed transplant. She was never taken off the list. She continued to accrue time and when she would eventually be placed as active she would pretty much be at the top of the list, barring obvious emergency needs of another patient.

The months passed and my husband got sicker and sicker, He went from his happy self to a person who lost their entire left side, from legs to eyes nothing worked on that side. He was a very stubborn man and refused to give up. He would do things just like before, except he would fall a lot and cause more pain for himself. Eventually he realized that he really needed our help and gave in to letting us help him. A doctor explained the disease to me and the kids this way. This is a horrible life taking disease. This disease will have its ups and downs. You will see him sleep for weeks on end and then he will have ups. He will feel ok and be able to have visits or go for a little walk outside. He explained that right after radiation you will see more ups, then time will pass and the ups will be less and less and eventually he will fall asleep one day and likely not wake back up. That as awful as this disease is that is the bonus he should simply fade away and not really know its happening. Looking back I agree. I am glad that he fell asleep and did not have to see the looks on our faces when we knew he was no more. For those last months a lot happened. That is stories for another time another topic.

My husband passed away in August of 2014. The next morning my daughter needed to be in dialysis. All the people we know that truly never understood what she went through, saw it that day the little girl lost her Dad but she could not take the day off or she would be in the same boat. Off to dialysis we went. Luckily for us our nurses there know and love our family and they helped make it not so overwhelming. They allowed us to come in a different time so we would not have to face the other patients. This was we could deal with our emotions a little more privately. Of course our dialysis family is as much family as our actual family. The next weeks were a blur. Everything routine but we were all walking around zombies. My oldest daughter turned 21 and 15 minutes after her birthday ended her Dad passed away. She did what may be typical of a 21 year old. She ran to her friends and stayed drunk for several weeks. She was unbearable to be around. Refused to deal with emotions and only wanted to think of happy things. I wanted so much to help her and reel her back in but I could not. I was broken hearted and sad. I wanted her to be my leaning post but truly she needed to branch out on her own to deal with these emotions. My son he still to this day prefers not to talk about it unless he remembers funny things. My step daughters shut down. His two daughters from before me were of course heart broken. One of them lives in the same state so she was there with us the night he passed but have not seen her since. I do talk to her from time to time but she is married to a man who never respected her Dad or us so our relationship is flawed. We do how ever love one another and we talk on the computer and such. The other one is different , she never grew up with him and their relationship had only gotten on a good path about 6 years before he passed. She was heart broken and we still talk regularly. She is a part of my world although we never have seen each other. We talk on the computer, the phone and text. We share emotions and strangely we have formed a bond, She had a bad relationship with her Mother and Father and only decided to give him a chance because she figured half of what she knew was probably a lie. I am always glad she did that as that truly made his life better. He always tried to reach out to her but it took a very long time for her to reach back. She did and they worked through it.

So now a few months pass and the doctors tell me, Time to discuss transplant. Truth is she has been on dialysis now for 7 almost 8 years and for all the health reasons it is a good time to move forward. The dialysis was started to affect her in lots of ways, bones and skin and diet and parathyroid and all kinds of issues she was having.

We started to do all the testing again to make sure everything was in order for transplant. We saw urology to see if they still recommend Urostomy after transplant, we Neurosurgery to make sure the back is ok for now, We saw Endo to make sure her hormones doing what they are supposed to. We saw the Dentist and the eye doctor and the pediatrician. We did all the recommendations…….

 

For more on our Journey to my daughter’s Kidney Transplant see part 3

A Successful Transplant….