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

So now they tell me, ugg….

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

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

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

#TeamAngel

Team Angel- Part 2 in a series

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

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

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

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

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

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

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

 

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

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

#TeamAngel

 

to be continued…….