A wish for today…

 

My wish for today is that everyone take one second to be thankful to that Mom, Dad, Grandparent, Aunt , Uncle, Teacher, or whomever taught them to cope with things. To learn to accept life on life’s terms to be good to one another. In the end of life the only that will be said at a funeral (what your legacy is) is the kind of person you are. No one is saying wow they had an awesome stove and what a lovely yard they had. Do you know how many great jobs they had. What will be said was how you treated others , how you impacted others and the type of way of living you lived. So make your legacy one to proud of.

In my 25 years as an adult, I have learned so much. I used to think working all day and being able to buy things was the most important. Then I started having kids and I learned loving and caring for them and teaching them is most important. Then my youngest was born with VATER(VACTERL) Syndrome and I learned even more about life. I learned how to be a caregiver, and advocate for her health and so so much more. I have an honorary nursing degree as I fondly call it. I could go on and on about our experiences and sometimes I do but today I am just thankful to have learned the importance of simply being there. The importance of listening and the importance of hearing what you are listening to. The other day my daughter was having a rough time, she is noticing that all of her peers are so much taller than her. She is realizing that the medicines she must take make her face puffy and there is not much she could do about that and it is giving her some self doubt. I believe that is pretty typical type emotions for one turning the big 13 in 2 weeks.

She was telling me her concerns and I tried to respond with a joke. I thought perhaps it would lighten her mood and distract what was bothering her. Joking and laughing is one of my coping mechanisms. I would rather laugh than cry although sometimes inside I am crying while others see me laughing. It works not always but a good part of the time anyway. This time it did not work, she said Mom you are a clown always laughing but I don’t find this funny, I am feeling like and she explained herself. I immediately told her she can tell me anything and I will hear her out and try to find a way to make her feel better and if I can’t than well I can’t but at least she can get it off her chest. I let her rant for a good ten minutes and then I told her that somethings in life we have control over and others we do not. The things we can control we should and sadly sometimes we must accept the things we can’t and if there is a way to make those things a little better, we should at least try. This seemed to help on this particular conversation. I was proud of myself for knowing I had to turn off my coping mechanism and hear out hers. Had someone along the line not teach this to me maybe our lives would be even more of a mess than they already are. That night she hugged me tight before bed and said she is kind of glad she is small so she can still snuggle with me.

If that is my only legacy in life was that I loved and was loved, truly that will be sufficient!

 

One Less Doctor

The following article was written by CPR Podcast. I shared it as it is a description of a Cardiac medical condition that my daughter had. When she was born they told us she may have some cardiac issues. They only ever discussed a heart murmur. Then when she was 3 they found that she had WPW- Wolfe Parkinson White syndrome. She had an extra pathway in her heart and it caused her heart to race and potentially could be very dangerous if not properly handled.

I came across this article this morning and wanted to share it as this week , we got exciting news from my daughters Cardiologist. He has officially discharged my daughter from Cardiac care. He stated that is just about 2 years since her Ablation and she is not showing any signs that the pathway has returned. He of course will be available if she needed him but as complicated as she is any progress is giant progress. Thank you CPR Podcast for the medical description of this condition. 

You are dispatched to a residence on a report of a child with an altered mental status. Upon arrival, you find an 8 year old boy lying on the couch responsive to verbal stimuli. His mother states he had been playing outside today when he came inside and complained of extreme weakness. He laid on […]

via Pediatric Tachyarrhythmias — CPR PODCAST

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

The Journey to my Daughter’s Kidney Transplant

Part 1

 

My daughter is almost 12. She was born with a condition called VACTERL/VATER or Sacral Agenesis or Caudal Regression. They all basically mean the same thing. They basically mean that my little one is really complicated. Her first 48 hours started off with fear, surgery, uncertainty and some more fear. They also started with Love. You can’t imagine the emotion seeing your tiny little person so sick and so helpless, yet so full of life. She may have been complicated but she sure was a little  fighter. Time past and we learned of just what all this would mean and the amount of actual health-care she would need just to be ok.

It was in those first few days that we learned about her Kidney’s. We actually knew from sonograms that she was likely to have Kidney problems. We were also told people live with one Kidney. We did not make that our biggest concern at the time. The next 4 years we learned so many things. We watched her endure, surgery after surgery, sickness after sickness, pain after pain. When she was 3 we watched her Kidney Function go down. By the time she was 4 it was obvious that she would be on dialysis before to much longer.

When she was 4 she had her dialysis catheter placed and she started dialysis that day. By the time she was 5 we had gone to LifeLink for Transplant evaluation and to see if either myself or her Dad would be a match. Neither of us was a match for her. The few family members that would have been willing to test for her, had other health issues that automatically disqualified them. A living donor from a family member was not in the cards. That was not the worst news. There was good news. She was an excellent candidate for a cadaver donor. Although no one likes the idea that someone will die for you to live, the reality is that person will die anyway and they or their family chose to make the worst possible scenario, a little less, not so bad.  As my daughter was so young and had already endured so many health issues she was placed fairly high on the transplant list.

Just over a year on dialysis, we got “The Call”. I will never forget when the phone rang early in the morning. We were all up, I was getting ready for work, we were all getting ready for dialysis and school. My husband saw the phone and right away recognized the phone number as he was the one taking her to dialysis and appointments while I worked(there are lots of stories inserted here for future reference), He told me, Get the phone it’s yours ringing. (as I later found out he already told the Doctors, like she is always at work and feels bad that she does not go to dialysis please call her when the call comes) So I answer and I start crying like the sap that  I am . So instead of going to work and school, we ditch the book bags and all head to the hospital. They do a normal dialysis treatment, and everyone is talking and excited and there is so much going on. Our unit was blessed with not one match, but two. My daughter and another little boy(her kidney brother as we fondly call him) were to receive a kidney that day back to back. My daughter was second as she is more complicated and well I don’t really know why but that was the decision they made for whatever reason they made it.

I remember making phone calls, my Dad, my sisters, my job and so on. I remember one of the supervisors at my job telling me that everything is not as easy as I am making it sound so I should prepare myself that this is a big surgery for my daughter. I remember thinking why is she always such a bitch. Well in turn she was right. The surgery went off perfectly. The surgeon was pleased with the way things went and off to ICU she went and we not very patiently waiting to be able to see her. Soon enough we were all really excited, looking forward to everything positive that would come from her having healthy kidney. It was something we just can’t describe unless you truly witness and experience on a personal level. The gratitude for the family that made the unselfish decision to donate. The gratitude for top of the line surgeons that can get a kidney in a child that has no bladder and everything has totally been re-constructed.

That night she started producing urine. The doctors were ok with the amount but not thrilled. They told us that she is so sedated that we should go home and rest as when she starts waking up it will hurt and she will need tons of attention getting her comfortable. We listened. Very early the next morning we went back to the hospital. Sat quietly with her and waited for the doctors. They said that the kidney needs to wake up. This is not uncommon and there are big technical words to describe and explain all this. They continued to work at getting her kidney going. Lots of going ons. Finally she started waking up and they were able to get her off the vent. This was a fabulous day. We were so happy to see a little progress after several days of watching her basically sedated.

When we put her to bed everything was really looking up. Nurses assured us go home. Better for the kids to sleep in their bed than sleep in the waiting room. They need to have somewhat of a normal life. Well well all went home. It was my husband, the girls and my son and we were tired, excited and hopeful. We Just got home and we were hungry we started making some scrambled eggs. Just the second I flipped off the the stove the phone rang. It was the nurse. She said  you should get back to the hospital, you daughter had an episode, she stopped breathing and we are putting her back on the vent. We flew out of the house so fast that we literally arrived, with the kids upstairs as they were still intubating her. It was the scariest possible moment I ever could tell you about, except if I keep writing and I fast forward 6 almost 7 years later, I will tell you so many more scary and even scarier moments.

So, now the next 9 weeks pass. She is on and off the vent for various reasons. She is back on dialysis. Our dialysis nurse was our save all. The only time we felt comfortable actually going home and being home for 3 hours together. The doctors still held  high hopes the kidney would recover. A biopsy revealed that their hopes were founded. This kidney should recover. We watched and worried and hoped. Each day passed and those hopes started to fade. After the initial night that she had the breathing event, I spent every night in the hospital. Feeling like I would neglect one child for the next I struggled with the whole situation I was facing. My daughters health was literally in the balance. I would sit in the morning when the doctors would do rounds and listen. I would hear these brilliant voices discussing my child. They would talk if we do this , this will happen and if we adjust would this cause this to happen. It was like she was a puzzle that required great intelligence as well as balance. You must piece together this puzzle while you stand on a balance beam suspended in the air. That was what I saw. I continued to gain admiration for my daughters medical staff. I continued to be thankful for my family. My husband forced me to toughen up and be brave so I can take whatever may come. I would cry to him and he would cry to me and then we would say no time for crying, time for being tough. We were but our family struggled. We had two children suffering, with being distracted in school or missing school. We had one child who’s life was supposed to be getting better get worse.

 

During that 9 weeks, eventually she did lose the kidney. After everything she went through. Us watching her in a medically induced coma for so long and her being on life support caused fluid in the lungs and things were truly not looking good. Our doctors knew that they must piece together this puzzle and balance and that she would eventually be ok. After they removed the failing kidney they were able to get her back to her normal with dialysis and lots of medication in a few short weeks. ….

For more of our Journey through Kidney Transplant see Part 2