So now they tell me, ugg….

My daughter has been taking a medication for her Gastroparesis, a disease where the muscles in your stomach do not cooperate. The muscles fail to do their job causing the food in your stomach to just sit there. It takes many many hours to digest and what it does not digest you are likely to throw-up. My daughter takes this medication called Reglan. Reglan is supposed to speed up the motility doing the job the muscles are failing to do. She spends a ridiculous amount of time throwing up. The poor kid and I joke about are you sure you want to eat that, think about later when you throw it up. It sounds gross but what am I supposed to do allow a 12 year old to feel bad about this, obviously no, so joking gets us through and well lots of trips to lots of doctors also keeps us going. So yesterday we finally went to see the GI doctor. There is always some issues with these doctors and us. Either they cancel us due to doctor emergencies or we cancel them due to my daughter’s other health issues. Well we finally saw them outpatient. I am talking with them, explaining what has been going on since discharge and what we need their help with. So she asks me how much Reglan are you giving her. I explained she was discharged with 7 ml 4 times a day. She said that she needs to be on a much lower dose as higher doses cause involuntary muscle spasms that can become permanent, there can be other neurological issues but mostly more throwing up, diarrhea, nausea , fatigue, restlessness and on and on. Ugg wouldn’t it be nice if they would tell you about all this crap before, She is constantly tired, constantly having tummy troubles she complains of cramps and pains in her muscles and bones and this medicine can very well be contributing to all of that. Now we know why I let Nephrology handle everything as they warn me knowing how tricky she always is.

The good thing is now she is on half that dose and although we just finished cleaning up from an episode she feels better and we have scheduled an endoscopy to see if we can come up with a reason for the throwing up that may not be the gastroparesis. They can treat it with antibiotics but I think that is a bad idea as she already has very low immune system from her Kidney Transplant and she takes antibiotics daily from that and she is constantly with the urine infections so they are always treating her for that.

Well the life of a Vacterl Association kid is always going to be complicated. Glad at least she has amazing spirit and is fun to be around. I tell her all the time, kid I have cleaned up more of your stuff than the average parent you better be nice to me when I get old!

#TeamAngel

Team Angel- Part 2 in a series

It has been a while since I have written about Team Angel. Well I will tell you it has been one heck of a ride lately. The last time I wrote we were just discovering that Angel’s native kidney was infected and the extent of what it really meant. What it meant was several weeks of IV antibiotics, excruciating pain and a 7 hour surgery. It meant missing the Kidney Walk, Being in bed on Halloween( short story insert here) Angel’s Surgery team has known her for a very long time, they are like extended family just like her Nephrology team, so when Angel waited all day for her surgery only to get bumped by an emergency, they decided to hook up her room with all Halloween decorations and loaded her up with pizza, candy, cookies and gatorade. It was pretty awesome of them to make her feel so special, as she is.

Now the Kidney comes out. Her surgeon found so much infection and abscess that when he came out he said it is no wonder the extent of her pain, I can’t even believe she tolerated it that long. Of course he has done many extensive surgeries on her and she never ceases to surprise him with a new complication. That is what Angel does best and as her Mom, caregiver, and best fan and fan club of Team Angel that is what we do best! complication.

So now it has been just over 4 weeks since her surgery. Her new very long scar on her belly crosses over the one she had from her colostomy and its reversal surgeries. It is healing very nicely but still slightly tender. Since the surgery Angel was released from the hospital only to go back a week later after labs with elevated creatinine, and active for The BK virus, EBV and CMV , I believe it was the CMV that admitted her as that is the one that has actual treatment. They can give her an AntiViral called Ganciclovir and it is pretty nephrotoxic so they keep you in the hospital until they feel you can go home on an oral comparison of the medication. Her immune system is so weakened that she has caught a cold and it is still there weeks later, she now has another Urine infection , when I looked up the bacteria the internet says it’s mostly only found in sick people who  have poor health so that made me sad, but since her doctors did not say that I am not letting myself got crazy with thought, as I do a lot of the time.  It is quite difficult to always see your child suffering. There are days when I can do nothing but fight tears all day because I am just so sad she suffers so much. Of course I put on my big girl face and pretend like I am fine 99% of the time.

So now that she is home from the hospital it has been about 2 weeks. She is being treated outpatient for the urine infection and the cold should have been gone a long time ago but the cough is lingering and I would be concerned about it had she not just a saw all her doctors two days ago and they were not concerned. She is on antibiotics that would traditionally be given for a throat infection or sinus infection so if that were the case it would treat that right along with the urine infection, which here lies in the problems we are facing at the moment. She has the urine infection, she has a cough, she has pain in her kidney and less urine output, she was throwing up every day for weeks many times a day and she lost a lot of medication in this time so anything could be going on but as of Tuesday she her labs looked great and her virus panel came back negative of all three viruses and that BK has been lingering around a very long time. We go in tomorrow morning for labs and I am expecting that they will keep her although I of course hope not.

I have some errands I need to attend to, my driver side window in my car has been stuck up for months. It is driving me crazy as going in and out of the parking garage and opening the door people think I am going to rob them, I can’t go through a drive through anything without the same look and honestly I live in Florida it is the only time a year I can drive with open windows and I look forward to that. So my son who is 17 and knows nothing about cars takes apart the door , halfway through he says we need to go to grandpa’s house I need tools. What he needed was Grandpa to walk him through it. Come to find out the piece that needed replacing was stuck to the glass so they decided can’t fix. All night my kid pondered that window and went back out to try again the next day , after many hours of him having my car apart, Angel called her Uncle and said Jacob has a problem can you come help him. So they decide we will go to the junkyard yesterday and get the new part which we did only for them to shatter the glass while putting it in. Of course the Junkyard was already closing and it is a good 25 minute drive over there. So now I have no window and I need to fix that today so tomorrow if they keep her I will be ok leaving my car , I would hate leaving it wide open in a parking lot or garage.

There is always something going on with us. The good thing is we have gotten a lot of love and support from friends and family. My brother in law had a musical fundraiser for our family which allowed me to pay the remainder of my bills for November and get  my Dad and Son a birthday present. It may seem minor to some but it feels terrible to be so broke you can’t even do that. I am quite thankful that we got to be home for my Dad’s 81st birthday, Thanksgiving and my sons birthday. Since we basically spent the past several months in the hospital this is a true blessing to be home.  We have decided not to call back her Back doctor until after the holidays as her back surgery was supposed to be done in September and it is a very big surgery so we need her to be at optimal health before she gets that one done and then we will start dealing with Urology.

Angel’s trip is still on hold as she is not ready to be traveling right now. She is not really up for it yet I don’t think and going to New York in the Winter seems like a great idea but she has never experienced that kind of cold and with all her pain that might not make for a great trip. I don’t want her to need pain medicine just to enjoy it. We have told the nice lady who has sponsored Angel for this wish our concerns and that maybe she could change her wish to sometime more local so it will be easier to plan and closer to our hospital if need be. An hour drive is not unreasonable but on the other hand it is her wish and she should get exactly what she wants not what is convenient so it is a tough call. Either way she will get to do something amazing and I will do my best to make it as fun as I possibly can for a Mom anyway…

 

For current updates on Angel’s story you can always find on her facebook page @TeamAngel

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

#TeamAngel

 

to be continued…….

 

Have I ever told you about the time at KFC?

About 13-14 years ago, I was recently divorced and wanted  a bigger different place as I had just been promoted at work and was financially comfortable. Who knew fast forward to today I would be in such an uncomfortable place . Oh well that is not what this story is about. So I purchased a 3 bedroom 2 bath mobile home. It was nice-ish anyway. It had some cosmetic needs but it was not in bad shape and the area was nice for me being a single Mom. So I decided I wanted to rip up the carpeting all around the place and replace some areas with wood, which I actually did laminate wood look for the majority of the home.

Let’s be a little more honest here and say I did not put down the laminate flooring I hired a neighbor and then other neighbors offered to help and well anyway by the time the day came to put the floor down there were about 11-12 people at my house.

So now it is getting to be early afternoon and I needed to now feed all the people who were there. Truthfully only one person was actually working the rest were drinking beer and well I needed to feed them all. So I decided I would go down the street to Kentucky Fried Chicken, get a couple of buckets of chicken some sides and and stop for some soda’s along the way. So now I convince my sister to come to KFC with me as I don’t want to order all that food by myself. I will admit I was a lot thinner then , than I am now but even so I was not skinny and ordering a few buckets of chicken, well you know that could leaving me open for many comments and or jokes at my expense.

So now I finally go into the place and I order like 80 dollars worth of food. And the lady behind the counter says  to me is that to stay or to go. Now I don’t know what your response would be , but mine was Yes and Can I have a Diet coke with that.

I laughed and laughed the entire way home and to this day my sisters will joke with me and say Do you want a Diet coke with that, and we just crack up.

I am glad to say with all the problems of the world I can still look back and reflect on a simpler time for me and enjoy the funny memories.

Thanks for the reminder Vater Syndrome!

My 12 year old daughter had her appointment with Urology today. She has lots of complications from her Vater Syndrome. This is the condition she was born with that equals the physical defects her body has. She has recently received a Kidney Transplant this past December after being on dialysis since she was 4 years old. Due to her Urological issues her bladder has not functioned this entire time. It was decided prior to transplant that her Urological issues should be resolved after transplant for better success. Prior to transplant we say Urology as this is a requirement to fulfill for the Transplant department. When we walked out the appointment I had tears silently running down my face and the feeling of hopelessness and sadness. I reported this emotions to our dialysis nurses and doctors. They assured me that there is hope for my daughter and although I felt that way, they meant before transplant.

Today we met a new doctor in the same group. He was super nice, intelligent and patient. He explained things, he told us risks and he told us complications that can easily turn to life threatening problems. I listened intently. I asked some questions and I asked him to write down a whole bunch of things so I could research and learn about. He and I agreed that we should go forward with plans for her back surgeries. We agreed that he should consult with Nephrology and Her general surgeon who has done all her reconstructions. All and her colostomy take down, G-Tube and most of the exploratory surgery that she has done when she was little. If anyone knows her and I it would be those two groups of doctors, They have been by our side and pushed us through this journey since she was tiny. They helped guide us to make decisions that will give her better quality of life.

Now I have 6 options of how to proceed. One is to simply go about life as we do now. Do not change a thing except maybe work on getting that Stent out. The next five options are all similar in how I could possibly explain them but all quite different as far as how they are performed and how they would be managed after the fact. Each option gets more detailed as they go and deciding which way to go will kind of go by how she does on a Urodynamics study. This would show the truth about the bladder, its function, its ability to contract and all that goes along with a bladder. When she was a baby and her kidney’s still had some function, she was always wet. We don’t know if that is because function or size or maybe a little of both. She was a baby so it was not out of the ordinary to constantly change diapers, and by the time she was older her kidney function diminished and she no longer urinated so this was a non-issue until the future, which is now.

I am quite overwhelmed at the options and I know she is also. What exactly is the point of doing all this and at some point could still lose the Kidney as she is fighting the BK Virus that is the reason her Ureter is all narrowed and needed the stent placed.What if I decide to do all the surgery and then the kidney fails and this is all for nothing?  I wish that I would instinctively know what is best for her. Of course I don’t know and holding the sole responsibility to make this decision is really scary and making me realize how much of a support my late husband was. I can remember his voice and I can hear him. I know the truth, when it came to our daughter he was the voice of reason in my ever spinning brain. He would sit me down and remind me that no life is guaranteed. He would tell me that her doctor’s went to school and studied and still do to help people that have these issues. He would tell me that I need to believe in the best and be prepared for the worst and he would end it with keep it real babe we need to be thankful for everything so far, and don’t worry we will all get through together. I guess I was so comforted by him telling me these things that I knew for sure together we would make good decisions or at least the best ones from the options presented.

I know I can seek second opinion in NYC. I know there are referrals ready to be written on the drop of a dime if we decide that although this guy was great, maybe someone else has seen this more, maybe they have learned a better way and already know how to do something that will eliminate some risk? I have no clue and I hope my good senses guide me to help my baby, She is my little partner in crime. Well, hopefully I will find some other families that have experienced some of this and maybe get some answers from people who live with these type procedures, that is where I find out the important stuff as they already experience.

Well all I can say is thanks Vater for reminding me just how delicate my little girl is……

#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.

 

 

Not even sure how to feel!

Just over two years ago, we found out my husband had terminal brain cancer. During that time in the beginning of him fighting this illness we researched every possible thing to help him beat that disease. During that time we read a lot and some of the stuff seemed promising some did not. We followed strict doctor’s orders and we discussed all of our findings with him regularly.

I know this is controversial, so I don’t always bring it up with everyone I speak with. I don’t share this information with all my friends and family as I know some would agree completely and others would disagree completely. Well a friend of ours insisted that we get the Rick Simpson Oil( it is really concentrated marijuana into an oil) I can be consumed by eating, or smoking and there are many ways you can get it. In our State is is not legal yet medically although it seems to be heading that way. We were never able to get the oil as its is not readily available. We spoke to his doctor about this and they stated I can’t tell you to smoke it but I sure will not tell you not to. If anything it will help your appetite and will be a good distraction from what your body is doing to you.

Our daughter was 20 at the time and her getting her Dad something to smoke was not difficult at all.My husband was a recovering drug addict. Staying clean was one of his biggest priorities and getting him to take pain medicine was just about impossible. I was working part time random shifts outside of our youngest daughter’s dialysis treatments and both of their many appointments. One day while I was working an evening shift my husband and daughter decided to smoke. They went to the back room of the house so the other two kids would not notice and they smoked a little joint( by the way it helped a lot but of course it did not cure him). Out of nowhere his mother showed up(we used to call her PopTart as she always just popped up-that was her way of seeing if our house was dirty or a way to catch us being grown ups)-perhaps if she would have been so concerned when her children were growing up they would not have all had drug and jail problems- but that is for another story) So now she comes  in my daughter says hi and goes to her room as to try to diffuse the uncomfortableness of her grandmother showing up when she is smoking with her Dad. She did not say anything to either of them. She visited for her usual hour and was gone.

The next morning I am in dialysis with my daughter. She calls me. She starts flipping out on me for 45 minutes, how dare my daughter smoke illegal weed with her son when he is sick. I said hold up, he asked for it. He is 48 years old and you really don’t understand the doctor said its ok and it will probably help him. She proceeded to tell me how terrible my daughter is and how she will never forgive her for giving him drugs. I told her that she is being crazy, that stop yelling at me I was not even there and my daughter is 20 years old, stays home all day taking care of her siblings and your son( who would fall down regularly, need constant medication, would need assistance to bathroom and she actually had to bath him as he would not let me do it) My daughter did everything for her Dad like a nurse would do and everything like a daughter would do. Her Dad thought she was the greatest in the world. So after 45 minutes I finally tell her whatever I don’t really care what you think my daughter is a good girl and she is doing that to help her Dad not hurt him. I told her that she should not be so judgemental when her children are no bargain.  She said she was not mad at me only that girl. I got annoyed and hung up. Of course I went to the bathroom and cried and I was so angry.

I did not want to tell my husband as I knew doctors only gave him days to months to live and I did not want him upset with anyone. After 3 days of stewing about it, I could not help but to tell him. He was so angry. He called her and told her that is terrible and that he would choose me and his kids over her anyday and that if she wanted to be part of our lives she needed to apologize. She did not and 3 months passed where we did not speak to her and she did not speak to us. Then the steroid debacle happened and he kind of went crazy. I have written about it on another post if you want more details. Well one day he said I am going to call that crazy lady and tell her every bad thing she ever did. I tried with anything to stop him. He flipped on her and well again I was the bad guy(mind you who did nothing either time). Now the months are passing. His chemo ended his radiation ended and he was on a very manageable dose of steroids. He was no longer acting crazy he was just sad. I thought I can’t let him leave this world without the love of his mother. No matter what an awful person I think she is some part of him really loves her anyway.

I decided to call her, I apologized for things I did not do and kissed her ass so she would go see her son. She made a big deal that she did not want to come to our home and that I should drop him off at her house. I told her I will not do that, he can barely see, he can barely walk with assistance and he can’t get to the bathroom on his own. That he has accidents and its best he is comfortable you should go to the house and visit him. She waited three weeks and finally showed up. She was rude to me and my daughter but she was super nice to him. I was glad she was nice to him as he felt better when she left. He told me see she is not mad at you. I did not tell him what she said outside and the rudeness she showed towards all three of the kids. She decided they were all bad I guess.

Once he passed away our relationship with his mother ended. She did not come to his memorial she did not help in anyway with his final expense and she did not offer to do any of this. She simply was rude to her other son and said I don’t know why she is doing the memorial at your home she is this and that. I did not do it at my home for my kids, for myself. His family has many thieves, many people who will not care that is my kids home and try to take things that were his. I can’t guarantee that is how it would happen but my instincts told me this was not a great idea and his brother was more than understanding. I paid for everything, I took the burden of telling all friends and family and of course I had to deal with my own emotions as well as my childrens.

Now it is almost two years later. I have my feelings about her. My family does not understand how deep rooted these emotions are. My Dad says I should not even think about her. Sadly I can’t help it. She was wrong the whole time and all of her kids did hard drugs. Two of them still do hard drugs but she said terrible things about my baby who did everything for her son. She gave up her late teens to care for him when a lot of kids her age would have said hire a nurse. She never took that into consideration she just bad mouthed us.

Yesterday my youngest daughter is talking to her cousin and we invited them over. He is 14 years old and they are living in her house. They have come across their own hardships and they basically had a choice live with her or be homeless. They chose her. So when my nephew walks in the house he is wearing a tank top with Pot Leaves all over it. I said Um nice shirt. He said Grandma got it for me. I said does she know its weed. He said yes she knows. So I said to his parents um nice shirt, they said yeah my mother got it she liked it for him. So now my 20 year old who is now almost 23 and had the worst feelings behind all that was the worst devil ever but she buys this shirt for a young teen who was born addicted to heroin but she pretends like we are terrible people when we don’t drink or smoke or do anything. It was a time he was sick and we were trying to help him. I changed the subject and tried to enjoy their company but I was hurt by seeing this.

When they went home I tried to forget but it was bothering me all night. I have so much more important things to worry and concern myself with that I won’t let this consume me, but I know for sure forgiving her ever again is not in the cards. I think if my husband could know this he would be crushed that she said all those awful things about us and now she is promoting it. I will add that she is a Jehovah’s Witness and is always judging someone for not being like her. I almost want to call her and tell her hey they are fighting for medical marijuana I hope you go out and vote as I know their religion does not allow them to vote, they can collect from the government but they won’t contribute. I guess that is for another story as well. I will do my best to let this thought leave me this morning and I will remember that she kept telling me I know I will see my son whole and well again. Jehovah tells me this, so if she is right(which my religion does not tell me this) she is not going to be to happy because if he is whole and well he already knows how crappy this all turned out.

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.

The Doobie Brothers/Journey Concert

Last night my sister took me and my daughter(her first real concert) to see the Doobie Brothers and Journey. I will have to say this was one of the best concerts I have attended. In my younger years, I went to so many concerts, rock festivals and all that. Now that I am older I don’t have the opportunity to go as much and finances rarely allow.

My daughter is medically complicated. Last Saturday she went to the emergency room and wound up in the hospital for a week. On Wednesday she asked her doctor will I be home by Friday he said well I would like to keep you on the correct IV meds until Saturday. So I asked him Doc, any chance she can have a few hour furlough on Friday night we have tickets to a rock concert. He said No No No, I will get you out by Noon on Friday so you can go home and do your hair and makeup. It totally made our day.

I was concerned that she would not be feeling up to it. Life has a funny way of turning around. We fight her health issues on a daily basis and just when we think we won’t be able to go somewhere , it turns around and we get to have a great time. I guess with the downs must come the ups and I am truly thankful for that.

The show started with The Doobie Brothers. It was brutally hot out and we were afraid it was going to be horrible but five minutes in came the breeze and from then on out it got better and better. The Amphitheater was packed and the crowd was mixed with young and older crowd so we all fit in. I will admit I thought I knew more songs from the Doobie Brothers than I did but each one sounded amazing even the ones I never heard before.

When Journey took the stage the crowd went insane. The look on my daughters’s face was priceless. She jumped out of her seat right along with all the more seasoned concert goers and the show just got better and better.

The lead singer that has replaced Steve Perry, I forget his name he was amazing. If you shut your eyes you would not have a clue it was not Steve Perry. They all put on a great show, filled with great music and energy.

Pretty amazing to go from eating breakfast in the hospital to rocking out in the Amp!

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/

 

 

 

 

Am I becoming paranoid????

Next week will be 4 months since my daughter got her Kidney transplant. She was on HemoDialysis for about 8 years before receiving her new kidney. I try not to be such a worry wort, but I can’t help myself. I spend a good part of my life trying my best to take care of this precious little girl. She comes with great blessing. She is what some would call “A Hoot”. You are never quite sure what will come out of her mouth, and likely it will be a reference to one of the many shows tv series she enjoys, or something random she has picked up along the way.

Ever since she was a baby, as a family we had to learn to adjust and we had to learn to accept. We have always know that her future is uncertain. We pretend like we don’t know and we live as though somehow everything will work out. I get a lot of real support from my family and some friends I have made around the hospital between the staff and the families we bond in a way that is hard to describe. We can peep our head into a room for a quick hi and how things are going to spending hours on end with one another. I have mentioned before in other things I have written how much our hospital family means to us.

So now that the little one is almost 4 months post transplant, I have had the opportunity to observe a few things. I see that nothing about “After” is guaranteed. I have learned that there will be ups and downs and there will be lab errors. I have learned that just because your transplant book says you should look for these things, means those things are as dangerous as they sound and make you think. We have had a few scares so far. A few weeks post transplant she came down with a virus I am sure some type of common cold or bug. We were very scared but she came through with flying colors. Then there was and still is the Virus that seems to have colonized in her system. This may or may not become a problem but her Nephrologist feels that even though it could happen it does not usually present itself so quickly. She got a terrible set of labs, that turned out to be a lab error and she had a visit to the ER for stomach pains, and she is now admitted to the hospital until tomorrow morning with some strange symptoms that have presented nothing. Her lab work looks great and her Urine is not showing signs of issue other than its output which is poor and she is sluggish. If you read the transplant book it will tell you that these are two signs of rejection as well as her Blood Pressure was very high but came down with her medication. Ultrasound shows a great Kidney so we don’t really know what the sluggish urine output is other than possibly we have been doing a lot more walking and it is hotter outside now so maybe she is losing fluid through sweat which is something we never could have recognized before when she was on dialysis.

I feel like every time her temp is 99 and not 98 something is not right, I feel like each time she complains of a pain(which is multiple times a day) something has come apart to her delicately put together insides. I try to slow down my brain and say these are natural worries, it is new and she had a 7 hour surgery including a new organ, a Urostomy and a stint that jumped out! as I say, just a couple of days after surgery. (In the hands of the wound care nurse so that  part was not my paranoid I screwed up, it was the paranoid oh no what is going to happen, answer is nothing ) I have never been a paranoid person. As a matter of fact I kind of go through life oblivious to things. Not that I don’t know, not that I can’t and don’t find out the really important stuff, I just don’t pay mind to it. I have always been the person to find humor to get myself through it all. I did it last night while me, my daughter and my friend who was having her own hospital sleepover with her little boy. They had been there for many days and since, my daughter got admitted around 11 he was sleeping and she could sit with us while we waited for the dreaded labs. I have never done this with anyone other than my sisters, or my children and of course my husband when he was alive, losing him has proved to be difficult and in the hospital situations I really realized just how much I miss him. It was so cool to be having a slumber party late at night and our kids were there but ok. Having a Mom who goes through the exact same worries just with their own personal situations, truly was awesome. She would tell us stories and we would tell her stories and I am sure that the bond between my daughter and my friend has been cemented.

I don’t know if every single time she does not follow the exact path I expect(medically) I will get nervous. I don’t know if we will become the hospital pain in the ass family that comes in just to visit and hang out .But this time,  what happened was she was nervous. She woke up and said Mommy I feel swollen like when I was on dialysis, she had a headache on and off and she had low blood pressure in the morning and sky high at night, this all sounded like stuff that happened when she had no functioning kidney. So I don’t know if I just love her so much and want to make sure that I am doing the best I can to take care of her. I don’t know if I am becoming a paranoid mess….