Sunday, August 19, 2012

Deja vu

Well here we are in the same place as we were a year ago in the hospital!! He got home Friday from camp looked good made sure he did a good shower with hibiclens, washed everything in hot water, made him a good meal and sent him to bed early! Woke up Saturday about 11am which I thought wow good sleep.. he was complaining that he was cold but his face was bright red so checked his temp 99.7 for him that's low grade so gave him some Motrin and made him some food and gave him a drink. Things were going good until about 3:30pm. He was hot again and the fever had not budged and when I looked at his thumb it was brown. His dad and I decided that I better take him in because he can get worse so quick and figured get it cultured while there was still fluid in it and just get a quick first dose of IV's. Said by to the girls and off we went! Got to the ER had the worst triage nurse ever!!! Pretty much accused me of waiting a week to bring my son who had burns because he never heard of EB!!! I'll get into that later!!!! Got him in a room waited 2 hours for the doctor who didn't know a thing so I told him what we needed to do and gave my lesson on EB. Well by now Jonathon was not feeling too good. The nurse came in and cultured and the fluid was a yucky brownish green it was so gross and smelly, I have never seen it that color! After sticking him 3 times finally got a IV started and did some labs. I asked the nurse to check his temp cause he wasn't looking so good..103.7..WOW what the F*** I thought that is not good. They gave him 600mg of Motrin. Two hours later he was still very hot starting to shake so, I called the nurse and she re checked it only down to 103...gave him 1000mg of Tylenol and we just prayed it would start going down. Thank god my sister was with me cause honestly I don't show much emotion and don't like to in front of Jonathon cause I don't want to scare him but, I was scared. You feel so helpless as a parent and to sit and see your child in pain, body shaking, and him moaning cause he feels like shit and to know there is NOTHING you can do! The only thing I could do was keep a cold compress on his head. He was so hot I could of fried an egg on his forehead! But, having my sister there felt like I wasn't alone and needed to stay strong for him! About a hour after they started his antibiotic and told me they were going to admit him. Got up to our room oddly the same one as last year. Finally got him to bed about 12:30am. Didn't sleep so well he kept waking up feeling like he was going to be sick and between the nurse checking his vitals what seemed like every hour. We are now just waiting for the doctor who had a emergency. fever this morning is 100.9 only had to do Motrin but they are starting to worry about his kidneys because he is on IV fluids and drinking Gatorade but output is half of what they expected so, just trying to stay positive and pray that it's just the antibiotic messing things up!!! Hopefully we will know soon what's going on! Good note he was able to walk around gotta keep the blood flowing :)

Thursday, July 12, 2012

These are news articles that featured Jonathon

I hope this works....here are the articles that have been written about Jonathon. There is also a YouTube video that was made by Jonathons cousin Ryan a few years ago.


http://www.people.com/people/archive/article/0,,20062774,00.html

http://pqasb.pqarchiver.com/boston-sub/access/991182721.html?FMT=ABS&date=Feb+16%2C+2006

http://www.bostonherald.com/jobfind/news/healthcare/view.bg?articleid=1407339

http://massbiohq.org/2012/03/21/game-changers-lotus-tissue-repair/

http://www.massbio.org/news/279-new_therapy_helps_patients_soar_to_new_heights/news_detail

http://umassmemorial.org/support-groups-and-education/health-articles/epidermolysis-bullosa




http://www.youtube.com/watch?v=4UoJYqTlZIo&feature=youtube_gdata_player


Tuesday, July 10, 2012

Update on Jonathon

Well things have been very up and down these last few days!! I am doing anything and everything to keep him out of the hospital because he feels if he gets admitted he will not be able to attend camp! So, I told him we will pull out all the bells a whistles that we know of a do it! First it started with his toe the one I posted the other day, was put on Bactrim and it started looking good. Then on Sunday he showed me this spot on his right calf that started as a pimple then got little blisters, red, warm, inflamed. I had a good idea that it was MRSA just because the few other times he has gotten it this is exactly what it looked like! So put some infection medicine on it and got a cleanser to help. He did get a little sick Sunday night into Monday but the good thing is never got a fever! That spot now is a nice little hole in his leg but looking better. He is starting to get some pus filled blisters that I hope do not become anything!!! He is a tough cookie and does not back down to any challenge EB wants to through at him!!!!


First 2 pics are Sunday and the last one is tonight's.

Saturday, July 7, 2012

Just a few rambles

I don't even know where to start but let me start by saying Jonathons infection has cleared up!!! Very happy no hospital trips were involved!! Guess I will just jump in: I have been up and down with my depression lately and I think its just a bit of everything into one! I feel like the walls are closing in on me! I am the sole caregiver, provider what ever else you want to call it of my house even though Jon and I have been together almost 14 years I do it all: medical appointments, school stuff, bills, getting Jonathons baths ready, bandage changes etc....we don't have family close by and the ones that are don't help at all! I also have fibromyalgia, rheumatoid arthritis, severe back pain and a few other things that they are not sure about! There are some days that the pain is so bad I can barely walk and am in so much pain, I will ask Jon if he can take care of Jonathon for the night by doing bandages and all that stuff but I get an attitude, and we end up having a argument and I find it useless so, I just do it! Don't misunderstand me I'm not bashing him at all and love him very much! He is a great dad and his kids love him but I'm just miserable! We have two children that are special needs, and Jonathon also has the complex medical issues. Him and I have not had a "date night" in oh man who knows how long! I also know he is still in I guess shock or denial about stuff with the kids but I feel that's not fair I have had to accept it and make a plan of action for the both of them! If I don't who will? Right nobody then nothing gets done and that can't happen!! Yes, I do see a counselor and am on anti-depressants but, some days they are just not good enough! Jonathon will be 13 in August and even though things have been going down lately I am very excited to be celebrating a milestone of him turning 13 considering I was told he would never make it to the age of 5. And as happy as I am I am also sad because things have been worse for him then better like we had hoped! I am trying to get him a wheel chair since he has not been able to wear shoes much due to so much blistering on his feet which mean one of two things I need to get accommodations for my car or get a used one! Preferably would like a bigger used one due to the fact we can not do anything together because my back seat is small and when the 3 kids sit back there Jonathon has to sit by the window if not he will blister by his knees hitting the seat along with his elbows so, Ariana sits in the middle and with her sensory processing issues you can imagine how that goes!!! But I guess the point is guess who has to think about all of this and deal with it? Me....I almost feel I'm single and just have a room mate...I just don't know if I have the strength to keep dealing with all of this....some days I just want to pack up and go! I would and could not ever do that but it's my feelings! I'm really sorry for venting but when you don't have many that understand writing becomes your therapy!!!

Tuesday, July 3, 2012

Frustrated!!

Well here we are again with "I'm sorry I don't know what is going on" Jonathon showed me a spot on his toe that looked liked a blister was forming so, we went to his dentist appointment. Got home about 2 hours later and BAM toe was really red, warm and swollen. The weird thing is there is no open wound or anything. So, I called his doctor and they saw him right away. The doctor does not know what is going on! The blood work is good and his x-ray was good! He just got his antibiotics last week for another issue and now he's on another one for 10 days! As of this morning the red has spread so, not sure what they are going to do? Just so frustrated at this point!!!

Wednesday, May 23, 2012

What is this world coming too...

Jon and I have always tried to teach our kids to respect others, treat others the way you want to be treated and be a good friend!! But, over the last two days that way of teaching has been very hard to stick with. I found out yesterday when I went to pick Jonathon up from school that the reason why his knee had blistered and been acting up was because some boy in his class was kicking him everyday for the past few days. Well, he didn't want to say anything because all the other kids would have called him a snitch so, he just kept dealing with it. Finally the teacher could sense an issue and spoke with Jonathon privately and he came clean about it. Let me tell you honestly my first reaction was why didn't you hit him back but, I couldn't say that he was only doing what we have taught him. Of course my phone call was not returned by the principle so, tonight I had to write a very lovely letter!!! Then today my daughter goes to the library with a friend and the friend totally flipped on her because she wouldn't call someone a slut!!! As some of you know Ariana has sensory issues and become very upset when this girl started yelling at her, she the proceeded to put her hand over her mouth and hit her off side the head!!! Then took off and left Ariana to walk home alone and crying...what the heck is going on?!?! After I got to calm Ariana down we talked and I said I was going to call her mother but Ariana told me it wouldn't matter because her mom doesn't care. See that's the issue here why are these parents not being parents??? You have children it is your responsibility to teach them right!! I know some kids have issues but honestly so do mine but we teach them that it's not an excuse!!! Everyday they are tested and I just hope my parenting skills will be the winner in the end!!

Thursday, May 17, 2012

Well.........

I have been meaning to update for a while but, this darn fibromyelgia has not let me sit at the computer and I have yet to figure out how to update from my iPhone!! So I guess I will start with:

Me: as some of you know I have been laid off from my job and have been trying to find something along the line of what I was doing before but I have also been contemplating if I should go back to school or not? As, of today I still have not made up my mind!! It would need to be online classes and I can not find what I want to do online so, who knows what I will end up doing!!  My fibromyelgia and Rheumatoid arthritis has been out of control lately but I don't think the stress I have been going through lately has helped any of it!! But, my motto on hour at a time yeah its been that kind of months!! Any who that's really been it for me...

Jonathon: His skin has been outta control...I have never seen things this bad so many little infections, new places getting blisters, places not healing, its been crazy...He had his six month check up at the EB clinic last Friday and that went OK...They did a lot of blood work to see how things were but I haven't heard anything so I am assuming they are stumped about also..I'm thinking hormones because he is at that age he will be 13 this August.  He is going to be going to camp again and cant wait till then. I was hoping we could attend the PCC but don't think that will be happening now that I have been laid off. I wanted him to meet others and I would love to meet everyone that I have meet online through out the years but, maybe next one.  School for him is going OK still having problems with some of the kids but he is really trying hard to keep his grades up and is doing good working at it!!  One thing we are thinking it may be time to do is get him a wheel chair...He has had to miss some important trips at school because of not being able to walk that far and he was really upset that he could not attend so, we are discussing our options. If we do I will be having a fund raiser to help with the cost.  School is out in about 3 weeks and deciding if I want to home school them the summer program or send them to it!!!



Ariana: I am so proud of her she has come so far with all of her sensory stuff and learning to take the breaks when she needs too.  Home has gotten better she has been trying really hard to speak up when she needs a break here as well...we still have some work to do but I think we will get there.  She has taken all of the things she learned in OT and using them at home and school.  It also helps this year she has a great group of teachers and let me tell you that makes all the difference in the world.



Ellie: Cant believe she is going to be 4 in two weeks my baby is no longer a baby!!! She just started preschool last week, the first couple of days were rough but she loves it!!! It is so good for her to keep her busy while the older two are at school for the day...Her health has been up and down her asthma with this allergy season is out of control but I finally think we have it under control.