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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.

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

5 seasons in 1 week, umm thats a lot of tv….

A few years ago my oldest daughter really wanted me to watch Weeds, with her. I really wanted to watch, after the first episode I was easily hooked. I did not get to see more than one season at that time. Finally I got time to watch it but had family staying with me and it was too much activity to really pay attention, I missed a lot. So now I am re-watching and finally getting to see just how crazy Nancy is and just watch she really was doing when I was only halfway watching.

I know a lot of people are not interested in watching drug shows, but then again it’s in every show, What show does not have episodes of people smoking weed. It has been around for ever and  I doubt it is going anywhere, if anything it is more and more socially acceptable and not as big a deal as it once was.

So the story is a cable series so it is not really for kids but I will admit all three of my kids have watched the series. My youngest is just now getting through it she saw the first 4 seasons on her own time so I figured if she already watched what is the difference to watch with her. So now as we are on season 5 a lot has happened but of course there is still lots to go.

Show starts like any other, introduction of main characters. The Mother, Nancy, the teen son Silas, the younger boy who is about 10 is named Shane. Then there is the housekeeper, Lupita, and you start meeting the rest of the cast, Doug- her accountant and best customer, Dean another customer and friends husband, and sons girlfriends father. So you start seeing how they all interact and how her role as their dealer comes about. She shows up during the poker game, golf course and so on. She seems to be semi-wholesome in the beginning. Well , that does not last. She is a hot mess but somehow you will root for her to get away with it all, to live her life to find happiness.

You find out her Husband died in the very first episode. So she had this housewife lifestyle with him and she did not know how to keep that going. Once she figured it out, well she figured it out. The kids grow up as the story unfolds and they each have their own dealings with the mother and their Family Business…

I really enjoy it. The way I see it is if you love Gangster movies, shoot em up movies, family stories, drama and a little love and crazy scenarios I think you could really enjoy the show. It’s been out a long time so you can catch the whole series on Netflix and no commercials! Yay

Well it’s about time, Lisa….

About 1-1/2 years ago I wrote an article about Steroid Psychosis. This is probably the most personal experience I have ever shared here. Here is a link to it if you would like to read: Time has pas…

Source: Well it’s about time, Lisa….

Well it’s about time, Lisa….

About 1-1/2 years ago I wrote an article about Steroid Psychosis. This is probably the most personal experience I have ever shared here.

Here is a link to it if you would like to read:

https://lisabarriera.wordpress.com/2015/08/16/steroid-psychosis-a-personal-experience/

Time has past since I wrote this article. Just now I am finally making my doctor appointments and looking into helping myself. I have been seeing my Ortho for a long time because of my knees. I have been seeing primary because my Blood Pressure and I have now started seeing Rheumatology  due to the my joint pain and my primary saw something in my blood work that thought needed more attention.

What I did not deal with was my mental. My emotional status. My ability to look at the past of my life and love what was great and let go of what was not. I have made great strides in some areas and horrible in others. I have not been able to force myself to diet, to stay on an exercise routine. Some days I do great and I make efforts and others I can barely just take care of my kids and that is the best I can do.

I listen to other people, they tell me their problems. I hear them, I feel for them and I look at how much is stuff they could have controlled had they really been paying attention. I know for myself, I have let certain things happen. I could have stopped them but it would have changed everything and I was too afraid of the change, did not want to be the butt of more bad decisions, therefore hearing how all my decisions are bad somehow or another really screws with my self esteem.

When I read about that last year of my husbands life, and I read how I was feeling when I wrote that article it makes me feel those emotions all over again.I woke up yesterday, totally disturbed. My mind would not turn off. I was distraught at something that was said about me a long time ago and I thought I put it to smash, yet clearly it is still an open topic of discussion by people who have done nothing but lie and been lied to. Not by me I just went along with it. My husband said it is none of their business(meaning anyone) and he would not tell the truth about things that honestly there was no reason to lie about. Simple things like his brother inviting him over and him saying oh I can’t go because we have to do this or that, when in all reality we just had no gas in the car. He would tell his family that he had money from this or that, rather than no my wife pawned her ring so we could pay the light and buy this birthday present for you. Or even better They gave it to me. Who was they ?(no-one) why would they just give it to you. But funny they never questioned this. He said it, surely it must be true, although they are always the type that even if they do something nice to you they would say don’t tell anyone, I did this.

See if you are always lying, chances are you will believe others are lying too.

I have nothing to lie about. I tell the truth in my writing. I share information that is not anyone’s business yet I feel like sharing it and I do. I don’t deny that my father taught me the value of money, he taught me to invest and all kind of smart things. I heard him but clearly I was not listening. I have managed to be in my 40’s. Not a dime in the bank or anywhere else. No 401K no savings, no retirement plan, and to top it off just about no income. I was taught better, I just did not learn. When my daughter(my youngest) came into this world as sick as she did , I had no idea what the future would hold, and quite honestly income, and savings and money was rarely a thought, only to get through the month with bills and keep the kids happy- or happyish. We did our best. I worked full time he stayed with the kids. With the little one having a million appointments and all it truly worked out of the best. When I lost my full time job everything went hectic for a bit but we figured it out. I got a part time job, he found some apartments to manage part time and we made do. When he passed, all those appointments became mine. My daughter got listed on the transplant list and well if you read some of my other posts you can pretty much see where we are at now.

Finally I have made an appointment with a psychiatrist.

This appointment is way past due as I should not still be so upset about the comments being made. I should still not wake up and see my husband trying to choke me. I should not sleep three hours a night and then struggle for the next 6 with my brain and any combination of emotions until I finally knock back out due to exhaustion, unless we have an appointment and there I will be up again for the day only making the sleepless pattern continue.

I am going to find a way to live with all this pent up emotion. Figure out is it anger, is it depression and anxiety, is it fear that I loved someone so much that seeing him go crazy made me go crazy?I don’t have a clue, could it be everything I see with my daughter. Could it simply be lack of support or what I don’t know but in about 6 more weeks I will be able to start working on that. Good thing I am not suicidal as long as the appointments take to get but what can you do at least with my lack of income , I am getting medical help.

Don’t wait this long , it is to overwhelming.