Team Angel- Spinal Fusion

Thanks for the reminder Vater Syndrome!

These are the Before and After X-Rays of my daughter’s spine. Actually they are after and before as the pictures are posted.

Just last week we had her spinal fusion done. It was about a 4 hour procedure, although this is Angel we are talking about so you probably already know it was not really 4 hours. We got to the hospital ahead of time about 5:45 am and the day hospital opens at 6. By 6:20 they are looking for a good spot to put an IV. I explained to them she is a very hard stick. Even though they heard me they really were not listening to me. Not one of the 4 nurses could get a good vein. Don’t get me wrong the nurses found veins. They just did not work from all the scar tissue. The reason I tried telling them she is a hard stick. Eventually the Anesthesiologist Doctor came in and popped one right in an artery. I guess he can do that. At this point she was slightly overwhelmed but she is getting older now and learning to deal with the fact that she can’t stop all the doctors and nurses to come in when they need help. That is overwhelming for Angel she hates that. At home(TGH) they know that, at The Joes as Angel calls it they are learning.

So now the procedure is supposed to start at 7:30 and in fact they do take her back at that time. The nurse told me I will call you once the procedure actually starts and then each hour until it is completed. I was happy with that. I figured I would be less stressed getting the calls. I go back to the waiting area with me son and a gentleman from the hospital approaches me and asks if I would be willing to be part of their pilot program , updated text messages. I thought it was a great idea so I agreed. Now time is passing, My Dad shows up, now we are sitting waiting, my son, my Dad and myself. I am starting to worry why have they not called out yet? What is going on? Finally just after 10 am I get a call from the nurse explaining that the procedure is just now starting as they could not find a spot to put a central line, All of her access spots are shot and they struggled to find one.  It truly breaks my heart as I told them this from jump.

In any event she was comfortable and did not know anything going on as she was already sedated. Each hour or so they called out and each time assured me she was doing great. I also received a few text messages in between so I was super informed. I think the texting is great as it is not as scary as the phone some how or another.

When she first came out of surgery we were fortunate enough to know the recovery nurse. She has known Angel since she was a little baby and was quite familiar with her past health experiences. She recognized right away that her potassium was way too high for a Renal patient and immediately worked to get that reversed. By that evening her lab were almost back to normal. That was a good thing as any stress to Stevie(her transplanted kidney) is scary stuff.

The next two days were spent managing pain , only to wind up having a reaction to one of the IV pain meds so lots of steroids and benadryl and eventually figured out another pain plan. By the third day she was out of the ICU and on the second day of Physical Therapy. By day 5 we made discharge plans and have been continuing to heal at home. Aside from the obvious pain she is doing wonderful.

We are already noticing some differences, such as she is taller, her ribs are no longer sticking out in the front and back making her shirts fit wonky as she says. She said no longer feels the pressure in her lungs she was feeling from the ribs pushing and she is now practicing being straight which is quite different than it feels.

I knew this would be a big surgery, I was not surprised by the amount of blood she needed, or the issues getting the correct plan for pain. I was totally surprised by how quickly she was able to shift herself and put full weight on her legs.

Tomorrow she goes to get her stitches out and speak with the doctor about the amount of pain she is still currently having and the best way to manage it and hopefully get clearance to go back to teleclasses as the more you miss the harder it is to make up in school.

@TeamAngel

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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…….

 

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

 

 

 

 

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.

 

 

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.