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!

 

Advertisements

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

First step….

It was a simple gesture, saying welcome back on the board in Angel’s room. To a casual observer it may not even be noticed. To me, as the aunt of one of the most amazing people I know, that gesture was symbolic of the many years of love, heartache, triumph and hope that we have […]

via In Order to Get Anywhere, We Must Take the First Step — Marie Cheine