I am still in awe of the Boston Globe article.  They did a tremendous job.  I am so happy that we were able to spread awareness about Palliative Care and Mitochondrial disease.  Without the Palliative Care program you would not see all the smiles with Avery.  We are so very grateful for all they have done for our family.  It has given us and him such a quality of life.  That is what is so important. 

Here are the pictures that were in the Globe.  The one that Avery and I are on the bed together is the cover page to their inner magazine and the other one is on the front page as well as in the article. 

Of course their version is much more cropped which made it amazing.  You have NO idea how much it took to get Avery to look that good.  Thanks to his favorite nurse Sarah who is mentioned in the article and a nursing assistant, they had him looking like a million bucks :) 

There is also a video http://bcove.me/o5co75lq

So as you can see we got ALOT of press.  Even the dragon got some press.  He is infamous with Avery's admission ya know.  I actually need to send it a photo of Avery and his dragon to MTV, b/c everyone thinks Snookie was the first to have such a need stuffed animal but it was actually Avery :)  

On the home front, Avery is doing amazing.  He is back to baseline and his happy self.  Isaiah had a very rough weekend but is getting back to his crazy happy self. 

Happy Monday!!!!

Avery's big debut is in today's Boston Globe (Boston.com). If you can get the physical paper you will see some beautiful pictures :). I will try to scan them in if I can. They came out gorgeous.

There's No Place Like Home

After the dramatic return home and a rocky 6 days for Avery, I'm happy to say he is back to baseline. He was still requiring tons of suctioning with many desats until Sunday. Thankfully, it was my Sunday with no nurse and for the first time in eons both boys were feeling good. In general, Avery is just much happier when he is home. And all that nonsense that the insurance liason was giving me about if they sent Avery home by ambulance this time then it was be indicative of him needing it permanently. I knew that was not the case but they were worried about their costs in the end. I'm just glad I was right about this one :). It is just really really good for all of us to be back home together in our normal crazy routines. I heard from the reporter from the Globe bc she had a few questions & she said the pictures & interview were tentative for March 28th. She also said that the editor noted the pictures came out great. Can't wait to see :)

Isaiah also had his IEP this week. What a difference a yr makes. He has only missed five days of school this yr compared to 45 last year. As a result, he is learning so much. It was great to hear the team talk about all of his accomplishments & how very social he is (just like his momma). He loves the kids at school and has come a long way. When you are seeing so many kids struggle as they get older it is encourageing to see a kid like Isaiah who was so very severe as an infant and now he is getting stronger physically and learning so much. He is just getting better with time. Hopefully he will be with us for many many years to come :)

"Medically Fragile"

With every hospitalization over the past year I hear a term that I know the meaning to but just don't want to hear it applied to my baby.  Medically Fragile is the buz word that was used by many healthcare professionals to describe Avery during this visit.  Of course I know what it means but it is the acceptance that this is how my son is seen by everyone.  And if everyone but me sees him as being medically fragile then it must be true. What does it mean? That he is unpredictable and at any moment he can go from being great to coding.  While I know this is true it is just really hard to accept.  Accept that at a moments notice my beautiful little boy could be taken from me. You can just see drs. and nurses getting nervous b/c he tanks so quickly.  He even scared me during this hospital stay.  Just a simple color change in his face could mean something really big is coming and that just sucks.

This hospitalizations was really tough in so many ways for me.  Firstly, I had just been through an awful tragedy with my best friend and her family.  I was in one crisis while another one was happening in my own home.  Over the past month I have been so sleep deprived and emotionally spent.  Secondly, the trauma of almost losing my boy at the gas station and the panic I felt during that moment.  Especially having my daughter be there after what we had just been through (although I am thankful she was there). Thirdly, the acceptance that Avery is just getting sicker and sicker.  It is becoming much more difficult for him to rebound from a basic cold.  Here we are 4 weeks of antibiotics and lots of work just to get him home only at 60% of his baseline.  Lastly, what I had to deal with to get him home safely.  Let's just say, its all Political and everyone covering there own butts instead of worrying about the well being of a child.  I literally had a break down over this the day before Avery was released.  Many were shocked to see me shed a tear but I did it more out of frustration of the system and disappointment.  It was just not good. 

I honestly don't know how I will be when I lose Avery.   When I verbalize this, people will say "don't talk like that".  It is a reality whether people want to hear it or not and it is our reality. I mean how does a part deal with the loss of a child and in our situation it will be two children.  This disease has no rhyme or reason it just destroys lives.

Avery has had such a huge impact on our lives and so many others that I cannot imagine a day without him.  He had an IEP meeting today and one of my greatest concerns was keeping him with the same therapists and school b/c they know him so well.  I am happy to say that it was a non issue and he will continue to be home schooled and possibly attend the classroom at few hrs. of wk. next year.  But that was not what got me, it was the Avery love fest.  I could just see how many people love that boy.  You could also see the Avery love fest in the hospital.  He has just got so many people with that now toothless grin, crazy long eyelashes and crazy hair :)  One thing is apparent, Avery just eats up all the loving by everyone.  He is all about the love...

This basically sums up the last few wks for me, an emotional roller coaster.  I am just happy that we were able to get our boy home safely in the ambulance.  It was definitely for the best even though some people did not agree with it.  I don't care, I had to do what was best for him.  He is not back to himself and it's going to be a long road.  We just hope to keep him home and happy for as long as we can. 

Quick update

Avery is Finally heading home today by ambulance as i feel it is the safest transport for him at this time. Also I have not seen the Globe article yet so I would check online at Boston.com. I will link it once it's in. I will also update more when I get a chance. I'm totally exhausted and just don't have the energy right now. Thanks

It has been a bit of a roller coaster since I last posted.  Avery had started having fevers on Monday night which continued through Tuesday.  While fevers for most kids are good b/c it shows the body is able to fight the infection, for Avery this can be very draining.  He just does not have the reserve to fight and it can really take a toll on his body.  As a result he really struggled on Tues. His color was grey, he was working really hard to breath and just did not look good overall.  Avery has shown time and time again that he can go downhill very quickly.  So when he presents like this it puts everyone on edge, including myself.   Avery was immediately started on a number of antibiotics to cover all his typical bugs and blood, urine and sputom cultures were all sent.  A few of his labs were critical, indicating severe dehydration as a result of the fevers and his work of breathing.  Overnight his bipap setting were increased. 

So here we are 2 days later and he is looking much better.  The cultures are coming back negative which is good but the question is what antibiotic do you take away?  Obviously something was helping him but we don't know which one was.  So they will take off one at a time and watch what his body does.  If he starts getting sick again then things will need to be added back.  So what this means is that he will be here for a bit.  Obviously I don't want to take him home prematurely again b/c this time we may not make it more than 10 blocks.  While it is frustrating to still be inpatient, I want to do what is best for him and give his body time to heal. 

At least we have made really good use of the time here.  The Palliative Care Team approached me about being interviewed by the Boston Globe.  Since we all know that I am not shy AT ALL, then you know that I was more than happy to do it.  Plus, I am happy to get our story out there and hopefully help others that are going through similar things.  Avery was not too happy with the interviewing part (think he was wondering what all those men in precaution gowns were gonna do to him). The reported thought the interview was so inspiring that they came back with a photographer and will also run a paper article (Avery was all for that, how could he resist a pretty lady taking his picture). So on Monday look for the Boston Globe article and on March 28th the interview will be online :)  

Hopefully Avery is done with all the drama and want to go home soon b/c I know I do :)

Long overdue Update

Not even sure where to start!!! So on Saturday I came straight from my friends house (we slept there after the funeral) to the hospital for Avery's discharge. I was so exhausted that I was not even thinking of what Avery needed to go home with (ie. Suction machine, O2, and ambu bag). Add to the fact that Avery was really not ready to go home. He had been still requiring frequent suctioning. With that being said, we got all packed into the car and did not even make it 10 blocks from the hospital before Avery was sounding horrible. I had to pull into the gas station and start doing chest pt to try to get him to cough up the secretions. The one thing I did have was an O2 sat monitor which was reading 82% (not good). I was panicked. Thank God Janessa was with me, bless her heart. I had to drive back to the hospital but needed her to do chest pt on him. What a big girl, she was able to get him to 88% which is better than 82% until I pulled into the hospital. Another blessing was a resident that had just discharged us happened to be walking into the hospital. She was able to assess him ( by that point he was up to 94%). I was hoping we could go straight up to the room he just left but nothing is never that easy, right! Instead, we had to go back through the ER for assessment and 6 hrs. later we were back in the same room he was previously in. Ugh!!!!

Since then he has been battling copious secretions, many desats and very frequent suctioning. One of the reason I think he is having more respiratory issues is bc they increased his baclofen significantly. While it has helped his spasms it has back fired respiratory wise :(. They have backed down on the med which has helped some but now he is having fevers, UGH :(. At this point I have no idea when he is going home. I just hope it's soon. I am tired and just want us to get back into our normal crazy home life.