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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

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.

 

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

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.

 

Saw this on FB and decided to add my 2 cents.

The Senate voted 51 to 48:
1. To end coverage for preexisting conditions, veterans benefits, and aid to rural hospitals.
2. To remove discrimination protection for women in healthcare.
3. Against the provision allowing children to remain on their parent’s insurance till the age of 26.
4. To cut off funding for the Child Health Insurance Program (CHIP).
5. Against ACA contraceptive coverage and maternity care provision.
6. To direct committees to send budget legislation to defund and repeal the Affordable Care Act.
For those who get health insurance through work, no pre-existing conditions. Lifetime caps for coverage are back for everyone.
Real and disastrous actions are being taken that will affect more than just the 20-30 million people who will lose their health care coverage and the 3 million people who will lose their jobs.
Despite their assertions of this being an action to “repeal and replace,” no viable alternative plan has been proposed.
The House votes Friday.
As of this moment, no replacement exists.
This is sickening. Everyone is on the Get rid of the Obamacare the worst thing that has every happened in the world. Its horrible. Well for my young friends who have received a transplant and are in college and working little jobs to start off their lives they are lost in the shuffle. Angel(my daughter) will be lost in the shuffle. All her little friends from the hospital will be lost in the shuffle. Every day I get collection notices daily from offices because she is medicare, medicaid and CMS except CMS no longer exists, the Children’s medical services is now an insurance company which is your medicaid and they do just about nothing. So people like me who have no income, No LONG LOST INHERITANCE from my dead husband, or his imaginary checks will be covering Angels medical needs. We get so many bills now, They wanted her to have these Ostomy supplies that don’t work because the medical supply company makes no money on them. It is already a sick world we live in but come on healthcare in a country like ours should simply be a given. We should have a sliding scale for every family no matter how little or big is there income and everyone with the same benefits. If you make 300 dollars a month you can’t pay 300 in insurance but you can pay 3. If you make 3000 you can’t pay 2000 but you can pay 300 dollars or something much better than my own, not very educated self can come up with. Well I guess all our transplant patients will have to have 9 jobs to buy anti rejection meds because they are already way too expensive.
Blame it on whoever you want this system is flawed, just as flawed as the welfare system and just as flawed to all the perfect people out there that think they jumping on the bandwagon of any politician that truly has you personally in mind you are only fooling yourself. I don’t get it hope something fixes it soon.

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