Adding a few more worries!

This week is moving week. I have been packing for days and although I am almost done, there is still plenty of work to do.

I have not been looking forward to this move as I am putting my stuff in storage and staying with my Dad. After 25 years of living on my own, I am kind of sad that I have to pack it in a move home. I have been stressed about it, but have recently decided to look at it another way.

I have decided to see the good in it. I will be able to start saving some money, I will be able to not have to worry about lack of money and I will get to spend a ton of time with my Dad. I will get to live in a very nice area of town and I will be safe and loved. (of course so will my kids)

I always felt like I did not want to burden him. I know it will be an adjustment but in the long run it is short term and I jumping from one bad rental to another bad rental is just becoming silly at this point. I do have some concerns that my dog will be a nuisance to his dog as mine is much younger and a lot more energetic. Maybe it will all surprise me and they will become buddies, I hope at least.

I have not been able to work much the past few years, due to my daughter’s chronic illness and needs and my own medical needs. My knees are shot and my anxiety and depression were taking over full force. I have since started on a new medication and it is helping me to be more focused on what is important in my life. My family. My Health, their health and so on.

My daughter’s health has been a challenge to balance since the day she was born just about 13 years ago. She has Vater Syndrome(VACTERL Syndrome) Chronic Kidney disease and a whole bunch of other health concerns.

She is currently about 1-1/2 years post Kidney Transplant. She has had a lot of challenges in the past year or so but so far her Kidney seems pretty happy. She has some  virus issues that come and go and a constant battle with urine infections due to her lack of a bladder. At the end of next month we see Urology and they will make plans for surgical intervention to try to help with these constant infections. The procedure is called a Mitrofanoff and it is a long and complicated surgery at the time they will create a bladder for her and make a passageway using her appendix to allow for proper urination. It is big, she hates thinking or talking about it but it is truly starting to become an issue that is is not done already.

Yesterday was her monthly lab day. Although she was just discharged from the hospital last week and is just now finishing her round of antibiotics it seems something else is brewing. Her labs are off, her numbers are heading in the wrong direction and she is looking at another possible admission on Friday when she goes back to have a minor procedure(stent change) and repeat labs.

We are moving on Saturday so this could not come at a more complicated time, but hey that is what we do, complicated. I feel so sad thinking that the kidney could truly be acting up, but the doc said no panicking, it is not time to panic. It is time to watch for things and time to take care of the urological issues.

I would hate to think she could go through all this and potentially lose the kidney anyway. My poor little girl should simply be getting ready to celebrate her big 13th birthday. She should be ready to finish up school for year and enjoy staying at Grandpa’s where she can actually use the community pool as it is very clean and very well supervised.

Well I guess my worry hat is on this morning, but since she is in school , luckily she is not paying any attention to me. Hopefully today will be busy and distracting so we won’t be thinking about it much and hopefully I will close my eyes and my kitchen will pack itself. Yeah, I doubt that will happen but wishful thinking. As a Charmed fan, I wish I had that powers to move crap by just saying the name of the items like Paige does.. Yes I watch way too much TV!!

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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!

 

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

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

So now they tell me, ugg….

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

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

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

#TeamAngel

Team Angel- 1st of series…

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

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

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

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

Colostomy

2 Reconstructive surgeries

Colostomy reversal

Kidney  Transplant

Kidney transplant removed

Kidney transplant and Urostomy placed.

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

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

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

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

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

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

 

Check back for updates about Angel

if interested you can follow her story on Facebook

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

 

#teamangel

 

 

 

 

and the journey continues….

I have been blogging about my daughter’s health conditions and her journey’s for quite some time. I don’t have a very big following but that is ok. I am good with whatever comes as it makes me feel good to share her, our journey. It helps me to speak about things, hear it for myself and I enjoy writing sometimes.

While everyone all over the internet is going crazy talking politics, I am mostly quietly sitting in my daughter’s hospital room. I am likely to be doing something for or with my daughter or chatting with our hospital family as I call them. This staff of amazing people that truly continues to grow. This admission has been 10 days so far or maybe it is 11 I can’t even be sure. We have very high hopes of discharge tomorrow and very much looking to be home.

We initially went into the hospital for stomach and back pain and throwing up. She is now 8 months post Kidney Transplant and is having some complications. She has BK virus, which I have written about if you would like to know more, Somehow this particular virus likes transplanted kidneys. It is trying to take over but the doctors are like, nah we are really not going for that. So they have done a few things to try to get it to go away but it is still there and putting up its fight. It is quite likely they will reduce, stop or change what little anti-rejection medication she is still currently taking. With this many things can happen, what we would hope for is that her immune system would increase on its own. We would hope that her body would fight it off. If this does not happen there are not too many options and it is likely it will damage the kidney. I have learned from other families that they have experienced this and the kidney is still hanging on, they just have a lot of complications.

During this admission she has undergone, 3 ivs at least 15 blood draws from all up and down her hands and arms,  She got two shots of pain medication before she could even get an iv placed, she has had kidney ultrasound, and nephrostogram and stent removal and replacement. She has had x-rays to her stomach, a head MRI cultures of everything they could culture and finally the gastric emptying study.

I will hope for the best and understand it is not in my control. I can only do what is best for her and let her have fun and enjoy life.

We found a source of her stomach issues by doing a gastric emptying study. It took about 5 hours, she had to eat some scrambled eggs with some radioactive stuff in it and then take x-rays one time an hour starting 5 minutes after eating. This shows how quickly the food digests and looks like it is very very slow way more than normal. They are going to add a medication to see if it can help with that. Should resolve the stomach pain as long as she is not throwing up or anything else that has been on and off for a little while now.

I am pretty sure she is heading on the other side of this urine infection that she has. She is getting annoyed being in the hospital and when she does not feel good she does not want to be at home wondering if she will go to the hospital she would rather just go. So when she starts feeling better she looks forward to coming home. I decided to come home tonight as it was midnight and I just need to sleep in my bed. I have two knees that need replacing and some joint pain throughout my body and I can do 2 nights in a row but the third night if she is well I come home.The chairs that open are tolerable but the older I get the harder they are to sleep in.  She is 12 and totally has a blast with the nurses when I am not there. Some of the nurse’s and tech’s have cared for her since she was a baby. The interventional radiology department , knows her so well that they sedate her for procedures quite regularly and they are on first name basis’ and she is totally comfortable in their care. She has nurses that just come in the room to get hugs from her , just because. That is the amazing part of this whole journey. It is about the love. The people who come to work to survive their own lives and actually work diligently to save other people’s lives. It is beautiful and amazing and rarely appreciated.

Social Work, worries about paperwork. Make sure you have all of your papers in order. Make sure everything signed. I know they do this to protect the hospital and the patient so I follow formalities. The Doctor’s order tests and work on figuring out the sources of the symptoms. The nurses try their hardest to follow every procedure and always hoping for the best outcome, knowing that sometimes it is going to hurt the patient or maybe scare them. They have to put up with the personalities of the patients, families, doctors , techs,  and other personal , it is so much to do with each patient having constant needs and they get it done, and they show compassion almost all the time. My daughter knows the housekeeping staff, the dietary staff the lady who sits in the front desk information,She is buddies with child-life, she knows the people in admissions and the transporter people and they all do their jobs with the intention of making that hospital a place people can feel confident to trust them when they are already vulnerable.

I am truly thankful for these people I just spoke about but I am also thankful for the experience. I have learned about compassion and empathy and how they interact and are not the same. I have learned strength and vulnerability and I have learned just how far a little information can comfort a racing mind.

I will continue to share bits and pieces of my daughter’s journeys and of other things I decide to write about and I hope somehow sharing her ups and downs along this thing called life, that somehow it will make it a little better to go through. Perhaps her strength will be someone else’s rope when they are falling down and need help back up.