Archive | February 2017

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

BBQ Brisket

I found this picture among my own, although I don’t shred my brisket on a board, so I am guessing this must be from somewhere online I saved for one reason or another. Anyway credit to google I guess.

Yesterday I was heading to Publix , our favorite grocery store. I told my daughter what you you like for dinner tonight. We were thinking Steak Fried Rice. So we went straight for the steaks only to see we were not impressed with any we saw for that meal, however there was this brisket just sitting there, moved from its corrected spot, looking like a lost item that will probably not get purchased. I moved it back to the right area to save that fate only to see there were some very nice pieces that were half the price they were last time I purchased.

Dinner plans changed, BBQ Brisket, which I make in the crockpot so really it should just be pulled brisket with bbq or crockpot brisket, Whatever you want to call it , was delicious.

I started off by browning the meat with a little pepper and garlic, and some onion powder. I then added chopped, red, green, orange bell peppers and chopped onion. Then I added a can of Rotel tomatoes with Chile Peppers. Once the meat was browned to my liking I added it to the crockpot. I put the veggies I added a little bbq sauce and turned it on high. About 4 hours in I turned the meat and added more bbq sauce. Then I let it continue to cook until my son was about to cry I was starving him to death. See he is 17 and quite capable of making his own food but when I make certain meals, he reverts back to that little boy who liked being spoiled a bit. My daughter was patiently waiting but she uses her head. If it is a crockpot meal she knows she is going to smell all day and wait forever to eat. I tell them it is anticipation and they should learn to embrace it, they tell me it is torture…

When the meat is ready I take it out of the crockpot, shred it, remove any fat that I may have missed and add it back to the sauce and if needs anymore flavoring, I attend at that time then I let it simmer it the sauce while I make a quick pot of rice, or yellow rice or in last night’s case it was mac and cheese. I will admit it has been about a year since I have made boxed mac and cheese and I bet it may be 10 years before I buy it again. Totally lost my taste for it, would rather have plain egg noodles or rice with that meal anyway.

Learning to cut back on sodium is something I have been working on for years, as my daughter was on dialysis for 8 years, but I never really cut it out I just cut back and for as little as she eats it always worked but now that she is older and eating more I am truly learning to cut it out where I can, buy lower sodium versions of certain items and use fresh ingredients for flavors as much as possible. You would be amazed the flavor that comes from a chile pepper.

Kashmir…..

Shared from Youtube, if I need to state that to be on the up and up and all that.

So there are some days where no matter what your mind is a blur and you just need to escape it somehow.

Just got home from pre-op with my 12 year old. She is going in to have her scoliosis corrected. They will be putting in titanium rods and fusing a good part of her spine after they straighten out her ribcage.

I have known about this surgery for a very long time. It was scheduled for 6 months ago but she was not healthy enough to proceed at that time. She had her native kidney get infected and months of antibiotics that eventually led to surgery.

Anyhow after this day, I still had to meet up with her teacher and have a little school. See hospital homebound is a great program with little funding. If students miss days they lose funding, when a child misses on certain weeks it makes bigger impacts and this was one of those weeks. So we rushed to get in a little school and just now it’s 5 in the evening and I am quite thankful I threw dinner in the crockpot this morning.

I have several things I should be doing right now but quite frankly I am in my room, with my door shut and the music blasting as loud as my half broken sound system will go.

When my mind gets this stressy as I call it there are a few things I can do and one of the first ones is always blasting something that will bring me to a different time, a different place a mindset that was free and simple, no real responsibilities, no real people actually counting on me for anything.

The time and place right now in my mind is a much simple fun time, back of Lorenzo’s alley way on 249th and Union, hanging out sipping beers and blasting music, my first introduction to teenage life, my now I am old enough and cool enough to stand in a street alley, freezing my butt off killing myself with smoking and drinking and thinking there is nothing better than this. My life free and simple.

Blasting music from this time of my life is so easy for me, so familiar and yet so so far away. 25 years since I lived in NY 25 years since I really had friends, people to hang around with people who believed in me and trusted me. My childhood, teen neighborhood friends, school friends and all that.

In the years since, I have been married twice have 3 children and have surely had my ups and downs over these years .I would not trade them for anything as I love my children more than I could ever imagine an emotion even existed for, but today I just want to hide blast some Zeppelin or the Ramones and ignore the real life that exists on the other side of my door.

 

How does this work? If I want to write a novel?

I have been thinking of all the experiences of my life. The experiences that I have lived, the experiences that I read about, the experiences that others have shared with me. This all lives inside my brain. In the place I know there is like a whole series of novels in there , but how. How do you separate the real from the fiction and not crossover lines of deceit? How do you write an entertaining novel, a story someone enjoys reading based on things you know without sharing parts of your story that intertwine with other people’s stories.

I feel like it would be a lot more fun to tell the tales I would love to share, embellished to hide any real identities and enough to add some of the fun stuff that intrigues you to continue reading a story.

I have not always been an avid reader, as a matter of fact I suck in that department all together. I read a lot as a teenager, required stuff and stuff friends offered that they liked. I preferred to read a magazine or talk or something else. It was only in the recent years that I found out how much I enjoy writing. I was a class clown. I went to school to hang out and once 10th grade hit, at the request of the guidance counselor , I joined the CO-OP Program. You go to school one week, and work one week for the entire school year. You get paid not as much as if you just worked there but it was a paycheck, and you got skills experience. We believed that mattered at that time, only 25 -30 years ago.

In addition I had been working at the gas station after school and on the weekends, also back then it was full serve, you actually made min wage and tips, I racked up being a young teenage girl working in a gas station in the cold, in the rain, whatever and I milked it, really milked it. On school weeks I took, how to balance a checkbook, math. I took reading and study hall and aerobics and lunch or whatever I was forced to take. Science and History,although history probably had my attention the best. Never knew it then but looking back at my life I was ADHD as best as you can be. And in addition I do not hear correctly, but I hear perfectly so not really something someone would notice, other than me, I always knew something was wrong with me. I have never been properly diagnosed and have always been self medicating.

I have a lot of stories all tangled up and I would love to explore writing a novel, so if anyone can offer some pros to doing that please please comment and tell me, encourage me.

Enjoying the wonders of nature….

On a cold and rainy Sunday morning. Some of my family and I had the pleasure of being in Orlando Florida. We live in Tampa so it is not a very long trip for us, but with other obligations, appointments, schedules and finances travel is not something we can do very often and certainly not all of us together.

It was my Dad, my oldest Sister and her Son and Granddaughter, my youngest daughter and myself. The day before we actually went to Orlando and even my other sister was there but only for that day. It was a pretty mixed aged group of family , kids and adults. went from 81 right on down to 4. My Dad has his health issues, my sister back issues, me knee issues and my daugher bone disease among of health issues. The other two are basically healthy as far as I know, anyhow.

The cold weather made it slightly uncomfortable on Saturday, but on Sunday it was added rain. It lasted most of the morning and it really not the best day to have spent a fortune on tickets that were only good for that day.

The main reason for the trip was to take my daughter somewhere fun. Her last trip was her Make a Wish, when she was 3 and sadly, she remembers just about nothing of that time. My daughter has been through an awful lot this past year alone, never mind it has been her whole life all 12 years of it so far. One surgery after the next, one trade off for another. She recently spent 5 months in and out of the hospital with urine infection after infection, to finally her native kidney got terribly infected requiring months of antibiotics and finally a nephrectomy. This little lady has been a trooper through all that she had to endure and she continues to be that way on a daily basis. Since transplant she has had a lot of downs and she has major spinal surgery scheduled for 2 weeks from today. We all just wanted her to enjoy some of what life has to offer while she has a break from some of this stuff.

We wound up in Universal Studios, all ready to see Harry Potter world in its full glory. The parks ability to amaze me has not changed in the 10 years it’s been since I was there last. There were tons of new things to see to the point that we did not even see the old things.

We get to the park, decide which side has the attractions we want to see first and head straight to the Harry Potter world. The kids first stop was surely to get a magical wand.We decided to do a ride first and then head over. By the time we walked from the entrance to that area, we were soaking wet and cold. The kids did not care much but for me my knees were crying. My Dad was frozen and my sister was only good when she was walking, once she had to stand still the pain would overwhelm her, sit or keep moving works best. My daughter ignored her issues and went straight for the fun.

Now it is time to see where we will get this wand. We decide we are here we should do the whole Wand Experience. So we get to the line. It is not terribly long as the cold and rain deterred park goers. We had to wait about 10 minutes that felt like and hour for sure. As we wait in the line I am taking in the beauty of the park. The way they designed the buildings to look like the movies. The way they designed it to look cold. The way the snow was atop the buildings truly made me feel like I was meant to be in a cold place, that I was pretty cold. As the line starts approaching the entranceway to the door of the attraction, I am stopped next to a drain pipe. I look down and I see this little yellow flower all wilted and being ravished by the rain, coming through the pipe. It was so simple and beautiful to me. I thought of all the things I will see today I know some will be so big and amazing, but I am sure that my memory of the day will go back to the simple beauty of nature. The one little flower just there for the taking of the rain.

No matter where I go and what I do I try to take in a little bit of the world with me. I remember a time in my late 20’s maybe even my early 30’s I was hanging out with my Dad. Doing something to my home. I think we broke the spigot to the outside water hose and my Dad was fixing for us. So a very big beautiful bird flew in the yard. I said look it’s a Pterodactyl. My Dad stopped what he was doing and said, Really? do you not know what that is , I of course responded with a big bird, I don’t know. He stated you are uncultured. Why, I thought I did a better job teaching you about the world. I felt stupid, like I live in Florida and I should know that was a Crane of some sort. I don’t really remember. I just remember feeling dumb and wishing that I did not say there was a long ago extinct prehistoric bird in my yard.

Over the years I started paying more and more attention to nature surrounding me. I tried to learn the names of things and have made it a point to take photos of interesting things and in turn have better adult type conversations with my Dad, after my mother passed 17 years ago I realized that getting to know him a  person and not just a Dad was pretty important to me and having him like me as a person and not just his kid was equally as important.

When I saw that little yellow flower just hanging on , on the edge of that drainpipe, next to the awesome wand experience of Harry Potter I knew it was something I just needed to discuss….

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