Tag Archive | love

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

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

 

 

 

 

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.

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/

 

 

 

 

The Time I got Married in the Neuro-ICU

Not exactly the wedding I expected, but for our relationship it is completely perfect. We were together for about 13 years. We talked about marriage many times. We had several reasons for not being married. This was not our first time around. We each had two children before we knew one another. We each had our own sets of baggage.

We had a pretty good relationship as far as things go. We rarely fought, we both shared a nutty sense of humor and we enjoyed each others company. These are the things that actually made our relationship work. Some of the baggage we had stayed with us, especially in the first couple of years. Then I got pregnant with my youngest daughter, our daughter together. By this time we truly were a family. He stepped very easily into the stepfather roll of my kids. He truly became their Dad, they always knew their father exists and my oldest has her memories. He choose to stay away from us, I guess for him that was his coping mechanism. We had contact with some of his family so it was not totally out of their lives, just not active or around.  Recently he has tried to fix it. Kids feel too little too late. But they are at least nice to one another. They had their Dad he may not had been their biological but he loved them and did what he could for them.

When our youngest was born she had many medical problems. Her health to this day is still uncertain and we overcame a lot of obstacles as people, adjusting to the way our lives changed. As the time past and continues to pass this child has been a true blessing. She has changed the way I see things. She has taught me what strength really means, she has taught me what unconditional love actually looks like. I knew what it felt like but spending a good majority of your life in a hospital, you actually witness true love. Not in the lovey dovey way but in the you can puke in front of me way and I can hold your wound sites and not puke on you kind of way. The bonds that our family gained through raising a family and a child with special needs and being surrounded by other families sharing similar type journeys is a gigantic eye opener. Will make you re-think getting behind the wheel drunk, will make you think twice about doing something totally reckless. When you experience your child fighting for their life and you look out of her room door just to look at something other than what is in front of you and you see a family saying goodbye to their family member. It is something that medical professionals and hospital employees witness regularly. They live it but they are helping and they are professionals, they have learned to push as much emotion away as they can.

Years started passing, the subject of marriage came up many times. Most people thought we were married. Most people did not know that he was not the father of all three kids. I guess if you would really look you could tell, but when you see people together for so many years they are family, so they look like family. We always put it off and we had decided that when my son turned 18 we would marry. That way I always had their last time until they were older and our youngest would understand as we all lived together. It made sense at the time.

About three years ago my husband started acting a bit strange. He started working out, which was good. He started going out more often, which was weird but good. He then started doing weird things. He loved his homing pigeons- a story for another day. One day I come home I see him in the back with some guys, I had met them before but did not know them well. I thought it was weird  but I did not interfere. I just went about my business and when they left I asked why they were there. He said Oh I sold them a couple of birds. I thought Oh thats weird we must need money, I don’t know about. I told my oldest daughter don’t you think Dad is acting weird. She said yeah I saw him drinking beer. I said maybe a midlife crisis or something. Then he started helping out the neighbors down the street. They were a freeloading family. Mother a druggie, Father a drunk. They have like 5-6 kids, they seem to love them but not more than they loved their habits. He allowed these people in our home all the time. Showering(they  had no water) eating, watching tv, playing with our kids and so on. This was really weird but well he was a nice guy so him helping people was not weird, it was just going on too much.

Our lease was up and after 9 years we were ready to live in a better house, a better neighborhood and well we were looking forward to getting older, the kids growing up and living our lives a bit more. So we got this great house, clear across town. I was working, he was working even my oldest daughter started driving and working. Things were looking up until one night the last night in the old house, he mentioned I am having a hard time seeing. I thought perhaps it was from the operations he had when he was a little boy. I did not know what it was. I made a doctor’s appointment for him. We moved and the vision was getting worse, his behavior was getting weirder and his ability to do things was clearly affected. Instead of him moving things like always he was bossing everyone around and doing nothing but cracking jokes. Him, but not him. So finally one morning he is acting really weird and I tell him I want to bring him to the emergency room. He resists and uses every excuse, he banged his head, it’s just a headache and well everything he could come up with.

So now he is in the shower and he starts screaming, he does not know where he is. I told him enough you are going to the ER. Truth is he tried no I am going to take a nap. Boy was he stubborn. Finally I get him to the hospital. The nurses in the waiting area don’t take him serious. He is having me push him in a wheelchair in and out of the place, he is on the phone and talking to people and outside smoking( a habit he had given up years before) . Finally it was his turn. The doctors checked him out and whatever they saw they knew I was not kidding about his symptoms and they did a CT Scan. This proved his brain to be very swollen and bleeding. They called for transport and rushed him to another hospital. The next three days were crazy. Test upon test and doctor upon doctor, We switched hospitals- another long story.

Now it is the day before he is to have a brain biopsy. He was very scared, as I and the whole family. He asked me, Please can we get married today. I explained to him this is not to easy to do. You have to both be present to get a marriage license and then they have the three day rule in our state. He started telling everyone that he really just wanted me to be his wife (legally) before he did this, they were cutting into his brain and well If I was not his wife before, I don’t know what I was so if it gave him comfort I was in. I was in it for the long haul with him with or without marriage. Well finally someone explained to him, if the doctor and the hospital write a letter to the court I can go to the courthouse and get all the paperwork for marriage with only one party. There were certain things that had to be proven to make it happen. Well If that man did not love me, and not want to marry me I could not tell. He called my sister at work and told her that I was going to get the license and we were going to get the social worker to marry us as she is a notary and my sister said no way. I am a notary and I am going to marry you. We will bring all everything just you relax and get ready to be married and obviously get your surgery.

So that day, I had to go back and forth to the courthouse like 3 times then rush home to do my daughters medical stuff and then back to the hospital. See not only was it going to be our wedding night, it was going to be the night before his brain surgery and two nights before our daughter’s spinal surgery- also another long story. So finally as my kids joked, Dad can’t get out of this cause he is in the ICU and they won’t let him out of his room and of course Mom you are late to your own wedding. Well I was late and if you ask my oldest daughter we had quite a lot of adventures getting all of that accomplished but we did. We got married in the hospital’s Neuro Intensive care unit. The nurses told us that my husband was the liveliest patient they ever had in that department.It was sweet  our kids and my nephew and my sister and some friends of ours were there and then his mother and sister were there also, they just came to visit before surgery and got to go to a wedding. It is not that we did not invite anyone but well we did not it was not at all planned we figured one day we could have a party or something to celebrate. He just felt like if something happened I would never know just how much he loved me. Of course he was wrong I knew for a really long time but I let him marry me anyway. Sadly his diagnosis was terminal and I lost him only 9 months later it is going on two years now. It is weird to be a widow when we only just got married. We used to joke that we did not have an anniversary we went by the amount of miles on the car. We met two days after I bought my car, which I am still driving and I just hit 179000 miles. We shared most of those together.

So now I have told you the time, I got married in the ICU.

Steroid Psychosis- a personal experience

There are some things in life we don’t ever believe we would have to experience. Not only do we not believe we would experience them, but we don’t even focus on the the fact that these things could happen. Why would we? I don’t know but I did experience this and there are many times that I believe me and my children we traumatized by this entire experience.

My husband, was a really great guy. Sure he had his issues, and maybe even a little more than the next guy but he did not deserve to leave this earth the way he did. Well in his opinion he did. He always said,”I have done a lot of bad things and I will die a miserable death from some horrible disease.” I would get angry and tell him shut up, you are being dramatic. Well he must have had great instincts, in fact he did but who would think that great. In November 2013 he was diagnosed with stage 4 brain cancer(glioblastoma). This is the most deadly and aggressive brain cancers a person can get. Sadly by the time we found out treatment was only a way to delay the inevitable. He did fight with everything a person could fight with. He did have his ups and downs and he did pass on knowing just how much his wife and kids loved him and a few other people as well.

When I took him to the emergency room, the staff(front desk) thought he was over reacting. They saw him going in and out of the front doors. He kept sneaking cigarettes(he had quit for a very long time but some how right before we knew he was sick he started again) He was on the phone and talking and joking and being himself. However, I knew that he was very sick. I knew the crap he was talking was not really making sense. I knew that the time frames he would be referring to were not current and he was not seeing correctly. He was walking into things and other signs only someone who knew him would notice.

When he finally saw a nurse they saw his heart beat was extremely low. This concerned them. I told them he is very sick. Terrible headaches and he is confused and so on. They agreed to do an MRI. I guess they saw something when assessing him that they agreed something was going on. Once they did the MRI, the doctor came in and said we have an ambulance on the way, you are being transferred to another hospital. Your brain is very swollen and we see a lot of blood. We don’t even know how you are walking and talking. At that moment he passed out and I had to soak in the information and try to comfort him. I made the pertinent phone calls and went to pick my son from school and bring him to my daughters who were both at home. I told them what was going on and went to the other hospital. After a few days we transferred hospitals again only to get the proper diagnosis.

After the brain biopsy a few days later we went home. We had the first appointment with the cancer center. We were told by the oncologist, that with out treatment he has days to weeks to live. He opted for the chemo and radiation. This bought him 9 months and I am very happy he did. Funny that I started this off explaining that we should be traumatized but I have not told you why. The reason for this is I want you to understand the back story a little. We were in love and we had our issues but who does not. Our kids were scared they loved their Dad and I was scared also. We banded together to make this as comfortable for him as possible.

This is the part that gets crazy. At first they started him on a lowish dose of Decadron. This is a very potent steroid. This is the kind of medicine that if not monitored properly will make a person insane and violent. They call this steroid psychosis. The doctors or nurses or anyone else mention this to the patient or the family. For a guy whose brain was shot he was pretty in tact. When he was on the low does I would joke and say here honey I have your cocaine ready. Time for you to run around the house and clean. He did this for weeks. He had fun cleaning it was easy for him to do and kept him busy. After about 3 weeks we noticed he was becoming a little obsessive about it. We also notices that he was easily annoyed. We mentioned to the doctor. We were told this is probably from the brain cancer and we should expect a lot of ups and downs with his personality.

Weeks are passing. His health is up and down as they said they kept increasing the steroids to deal with the increase of the swelling in his brain. After this whole nightmare ended we were told that this is a necessary evil. Well now he was starting to get really hyper. He would want to exercise and smoke cigarettes, he would want to eat every 2 hours and clean and go here and go there. He was literally running me to the ground as in between taking him back and forth to chemo and radiation and all of his extra and I do mean extra curricular activities, I had to take care of my kids, I had to take my daughter to dialysis three times a week and deal with all of her medical issues. I also worked part time and had a torn meniscus(knee) and required surgery. I was at my wits end and he would be more and more hyper. When I say hyper I mean. Lets paint the house(that we rent), Lets re arrange the furniture. Lets go here and there and back again. Lets clean out the garage. Lets go to the casino, Lets go and lets go. I could not go for much longer when he started becoming weird. At first it was my son who had it the worst. He would start talking to him about the bible. He was saying weird things and insisting he saw angels. Then he started forcing my son to pray. I mean pray out loud prayers he does not know, never learned and never needed to learn as I am Jewish and our kids are raised that way. He then started on all of us. He would be very nice to every one and then curse us out. He would call us names that would make the toughest guy in the world blush. He would get angry about nothing and because of the steroids he was strong. Because of the cancer he was starting to go crazy and because of the steroids he was becoming psychotic.

There were days were he would choke us, me the kids, any combination. Calling the cops on him would be quite counter productive. It was not him. He was very sick and dying. He did not need to be abused and sent to jail. One day he was so crazy and mad about nothing I was driving us home from who knows where and doing 50 down a main road. He reached over and turned my car off. He grabbed the key with such force it bent in half. Luckily I am a good driver. Luckily I know how to handle pressure and luckily we did not crash. He would get angry regularly and say he was moving out. He would literally pack everything he believed he owned(meaning well I paid for the tv, I bought that picture, I picked out those pillow) everything. He would say he was moving out and put everything in front of the house. When he was really really mad he would call his family, mother, sister and tell them that we don’t take care of him. That we don’t feed him and we hide his medicine. He would tell him that our oldest daughter was to busy screwing the guys in the neighborhood to help him get dressed and get to the bathroom. He said I was not taking him to his appointments. This of course was far from the truth. We stayed with him every minute day and night and when he ever got to a reasonable amount of steroids again he did realize it. That is the saving grace in the whole thing is that he did not leave this earth angry mean and violent.

This steroid induced rage lasted about 2-1/2 months. We had days that were truly nightmares. We had to listen to him every word he said or he would flip out. He would call family members and lie to them. Sometimes he would decide to fight with them to. They always blamed it on us. They believed we were being bad to him and all the crazy lies they believed. To this day I can’t stand them for sitting home living their lives while he literally went crazy abusing us and then they have the nerve to think we did something wrong. My mother in law to this day exactly one year past his death has not seen my children, asked how they. 90 percent of his family is out of our lives now. Sad, but good they are pretty worthless anyway.

My family did not know what we were going through. I never believed they would understand. I would lie and say he was not feeling well so no one would visit. I just did not want them to see the holes in the walls and the broken things from his fits of rage. I can look back on it and laugh as I have a gift of sense of humor. I am blessed with the ability to say it was not him. He loved me, he loved us this was the drugs talking. When we finally could not take him anymore I had to do something drastic. I felt that he was going to really harm us more than what we already were and I did not want to see it turn into a tragedy. I gave him Tylenol and told him it was his medicine. I knew that once the steriods started wearing down he would crash. He would fall asleep and feel like crap. The steroids were keeping him alive, they were also killing him. Finally he woke up feeling down and hurting and sad. He said I think I am dying now and I need to go to the hospital. I played the loving wife and comforted him. Once we got to the hospital they doped him up on the steroids again. They admitted him just because he did not feel well and the stage of his disease. The emergency did not understand that he was going crazy from the steroids. It took several days of him being in the hospital for it to start getting resolved. It took for nurses to hear him screaming at us on the phone when we were down stairs in dialysis with my youngest daughter. He would swear we were out doing something bad. He would be nice in front of the doctors and nurses but be mean to us. Finally after a doctor saw me crying in the hallway to listen to me. I explained what was going on and he knew right away that it was the steroid psychosis. He was not the doctor caring for him. The only way he was able to help was by putting him in a seizure room. This way he was being monitored by camera. This way they could see what was really happening when they were not in the room. They saw him throwing waffles at the kids. They saw him screaming at us and all kind of things. They would come in the room and he would pretend to be nice and that we were playing. He would want us to go along. Of course we did because we did not want more problems but we would tell the nurses when we would go into the hallway for whatever reason. Eventually they figured out they need to get him weaned down to the lowest possible dose. This would take many weeks and we would not see the benefit for several weeks. They have us some medicine that would knock him out if he went crazy at home and sent him home. Well he was crazy for about 3 weeks or so. We agreed to take him home only if he would agree in front of the doctors that if he went crazy at home he had to take it. Well too bad that did not happen he would throw the pills across the house and call a cab to take him somewhere. He would have no money and I would have to send the cab driver away. This was a very very low point in our lives. The kids and I were really starting to be afraid of him. We were tired. We were annoyed and we were scared we would never see him as himself again.

Finally he got to a reasonable dose. He was awake and functioning but not psychotic. This was better. He did not remember anything from that time. He did not remember painting, He kind of remember making the  holes in the walls. He did not remember the name calling and choking and punching and everything else. He did not remember cursing out his mother. This all came back on me eventually. When he started getting normal again. He would call them. They would say are they still treating you bad. That wife and daughter and all this nastiness. He would lie to me and say they did not say it but I would be sitting right next to him and hear the conversation. He felt terrible and spent many many nights apologizing for hurting us. It took the kids a while to get close with him again. They always loved him and that is what allowed us to look past the horribleness of it all.

As the time passed his health continued to fail. We did everything possible to fight it. I loved him with all my heart and while he was going through that terrible time, I kept it to myself. I did not share with anyone except one time his sister because he called and forced her to come get him. That was one of his big moving out days. I told her he was going crazy. She took it like really, but not serious.

He was admitted to the hospital several times during the next few months. Each time he came home a little weaker, a little more tired and a little nicer. He eventually got so nice that it was nicer than I ever knew him. This made it so much harder to lose him. I would try so hard to boost him up. Any little thing he did I would tell him he was great and full of will. He eventually lost his left side completely. He would still walk. He would use his right side to his full advantage until this no longer was possible. He did fight this horrible disease with as much fight as you could ask for. He kept positive. He would make this videos and looking back on them I cry my eyes out. He would sit at the table for hours drawing and it would usually be something saying that he loved me or one of the kids names or something that was easy for him. He really did amazing considering our first visit to oncology told us days to weeks to live. He managed to get past the horrible couple of months and make the next and last 7 a whole lot better. Even when he would lay in the bed for weeks on end and barely get up to eat or use the bathroom, he would yell out Babe- I love you. He would do roll call with the kids and tell them how much he loved them no less than 20 times a day. No one could know just how much he needed to say it and we needed to hear it. I still see his face all swollen, with his eyes shut and him yelling to my oldest daughter, he would yell hey G come here. She would be right next time him watching tv or reading and he would say you know I love you. We spent months sitting quietly while he rested. The kids, the dogs and I would just sit there. We did not know what to say or do. We would just talk to him when he was awake. The good thing is that with each down came an up for a while. He would have up days or nights where we would actually have fun. We would watch movies. We would make videos play cards and one night we even sat and had a few drinks(this is rare for us ever and I mean ever) We would take those good times and cherish them. My oldest daughter and I spend months researching this disease, If there was a way to cure him of it we would have found it for sure.

I would hope that no one ever has to experience this disease, or any like it. I know that cancer is a monster that just keeps on. I would hope if you had the time to read this and the misfortune of knowing someone that must take these high dosed steroids to see the signs before they experience what we experienced.

I hope my kids really can move past all the bad and just remember the good. I know that is not really possible as I know I can’t. But like I said before I am quick to make a joke to help ease the pain.

I will always and forever miss him. In 9 days it will be the one year anniversary of his death. I don’t really think this is the kind of anniversary we dreamed of. Hoping he is resting in peace….until we meet again.