Here we are just a few days away from New Years and I am feeling like Avery is pushing the envelope of his usual first of the yr. Admission :(

It started on Sunday night with him screaming most of the night. This has been very unusual for him bc he has been sleeping great for awhile. He wanted to sleep but pain kept waking him. Because he is already on such high doses of methadone and Valium, there is not much else to give him. By Monday am, we noticed that his Farrell bag had what looked like his meds. Now the Farrell bag drain out whatever is in the stomach. His meds. Go into his j tube (which is his small bowel). So unless his tube is not in place or he has something like "poop" blocking the meds from ging down,they should not be coming up into is stomach and out the bag. It is also not good bc it means he is not getting his meds. And will go through withdrawals. All of this is not good.

I decided that we will try to clean him out at home bc honestly, they would do the same thing we are doing. I also know once I walk into the ER with Avery it will likely turn into a weeks admission. Ultimately, we may still end up there but I will try as much as I can to treat at home. He is still uncomfortable as I am sure he is not absorbing all his meds. We have at least gotten him to produce some BMs but it just may not be enough. Adding to that is he had some odd desats overnight into the 60s. Mind you he has not been respiratory at all. I don't know if all his meds. were finally absorbed at once and it really knocked him out causing him to desat or what. It's my only explanation. Either way, something is going on with him and it will show itself soon. I always say Avery throws pebbles at us before the big boulder is going to hit. Let's hope I'm wrong this time. Guess time will tell. I just hate seeing him so uncomfortable.

A Merry Christmas it was

I could not have asked for a better weekend. I can honestly say this was the first Christmas ever that all three of my kids were home (meaning not inpatient) and feeling well. Either Janessa was sick, Isaiah was retching or Avery was inpatient. It felt like such a blessing to be a family and not have to worry about packing my bags.

Janessa finally realized that Santa is not real :(. You know that means, "mom & dad I want this or that". It is sad bc a larger part of us looking forward to Xmas was Janessa leaving milk & cookies out for Santa. Now it's "when can I shave my legs or get a Facebook account" lol.

Isaiah had an awesome day. He was so excited about his basketball hoop and his bowling set. Although Milo already ate his bowling ball.....

Avery was just excited all around. My mom got the boys a ton of clothes and she got them matches Ralp Lauren shirts. They looked soo cute in them. Avery was more excited with seeing everyone open up gifts and of course seeing Grammy Fran. He is just so in love with her :)

We were all spoiled but honestly I am more grateful that my family was together happy and healthy. New years Eve is coming up and that is the true test for Avery. He has a rough night of pain and I have no idea why. Hopefully it is nothing and we will ring in the new yr. At home for yet another first.

I will post some pictures of Xmas soon.

Life is Good!!!!

Not much to report these days. I am so thankful for the quiet times. There are so many of our mito friends that are struggling and need prayers right now. So many families spending Christmas in the hospital. For many kids, it may be there last Christmas. While things could change on a dime around here, I am just so grateful to see how well Avery is doing. Who would have thought a tv would have made such a difference. Honestly, we should have bought the big tv long ago. You do not hear a peep out if Avery. He is soo happy. Just hoping it continues for awhile. Isaiah started his retching cycle today which is totally uncharacteristic!!! Maybe it means that he will be great this weekend since I have no nurse. We all know how he loves to retch on my weekends.

Just love blogging about life being quiet b/c it's usually crazy around here. We are looking forward to a quiet Holidays. We would like to wish everyone a Merry Christmas and a Happy New Years.

Things have been very good around here.  It almost feels like we have a "normal" life.  The husband and wife go to work and the kids go to school type of normal.  LOL.  The boys got an early Christmas present.  The 46' flat screen was put in on Sunday.  It's  like a whole new world for them.  The simple things in life really!!  Isaiah is in his glory but is a little perplexed of how he can get into things.  He has found a way but we are one up on him. 

Our next step is to move the outlets behind the tv so he cannot get to them at all.  But the toy chest will do .  for now.  Avery is a whole new lil man.  He can now see the tv from any angle and he is thrilled.  Who would know that the boys were so much into technology.  Typical men!!!!!!!!

Avery has been sounding great respiratory wise.  The only recent issue is he has been having difficulty falling asleep at night.  Something is just a little "off" with him but nothing too concerning.  Honestly, I have been thinking about where he was this summer, fighting for his life and where he is now (a happy tv watching boy) and we are truly blessed.  Avery has come a long way this yr.  He has been through so much and scares the crap out of us alot.  But when he is good, he is good.  I am just so thankful that we got another chance to see more of his great personality.  Just cannot imagine our lives without him.  He is our little Hurricane Avery (conceived on Hurricane Katrina, of course).  While I know he will always be in and out of the hospital, I find such peace knowing that he has such a great quality of life at home.  Especially since he discovered the Christmas tree.  He could sit there for an hr. and just smile at it.  Soooo cute. 

Isaiah....another amazing lil man that has truly come from a long way.  Yet I am faced with a "quality of life" decision for him.  As you all know, we have basically tried everything for his retching cycles.  He is at the point that he has a cycle every 7-10 days that last 3 days.  So it is surely affecting his quality of life, no question.  But the alternatives suck.  He has one more med he could possibly try but it runs the risk of  putingt him in liver failure.  Obviously not a good option.  The other that was suggested by Pallative Care could be a better option for people who truly don't know our wild boy.  Apparently, IV fluids is the gold standard for Cyclic Vomiting (which is what Isaiah has suffered from for yrs).  It doesn't prevent the cycles but can bring him out of them much quicker.  Problem being is you need some type of access.  Number one, I will NOT live in a hospital with Isaiah every 7-10 days to have IV fluids.  He is a whole different animal than Avery.  He would have to been in a "Can't get out bed" which they only have so many in the hospital and that is just not quality of life for him or us.  He HATES to be confined.  Number Two, in order to stay out of the hospital, he would need permanent access which would be a central line (port or a broviac like Avery has).  HUGE PROBLEM.  Isaiah would rip it out in about 2 seconds flat even if he's sick.  Okay, maybe that is being a bit dramatic but it's certainly a huge risk.  The line is placed in a main vein to the heart.  Which means a huge infection risk amongst other things if it will pulled out or infected.  Isaiah is just tooo crazy to risk it in my book.  I would be a constant wreck worrying about line infections.  He is just not that kind of sick boy and I don't want him to be, kwim???

So you see my dilemma?  What would you do????? Quality of life for Avery is much easier to define than for Isaiah.  I have not made any decision and am just trying to get him through every cycle.  But they are getting much more intense and he gets so much sicker with them.  I just don't know what to do.  Just wish they would go away.  If Zay did not have cycles, he would be the happiest, craziest, non complicated mito kid ever.  But obviously that is a total oxymoron, right? Mito and non complicated do NOT go together. 

So that has been on my mind for awhile just have not gotten around to getting it out.  At the end of the day, I am still grateful that the boys are doing well, considering........

Wow, I hadn't realized I last posted on Sat. ...eek  Guess it's just been so crazy since starting back at work.  On Tues. alone I saw 18 pt. while sick as a dog.  But I wasn't alone.  Almost the whole family was sick with colds at the beginning of the week.  We tried to stay away from Avery as much as possible b/c it would have most certainly landed him in the hospital.  Although I wonder if he was the one that past it to all of us.  I was nervous with him coming off IV antibiotics that he would start up again.  He did have a  rough couple of days but seems to be getting better.  His respiratory status has just changed so much since the summer's hospitalization.  It's always touch and go with him.  The nurses never know if he will be in the hospital or not, so even they read the blog, lol.  You never know with him b/c he can sound great one minute and the next he is desatting on 5liters on the bipap.  Hopefully, the sickies have left the Nault household long enough that we can celebrate Christmas at home.  I assume he will be in New Year's day b/c he has been since he was born.  Not kidding.  There's something about holidays and Mr. Avery. 

I also want him to be home long enough for his Make a Wish.  YAY!!!! He was approved and we are hoping to do a home computer with an extra large screen and switches for his games.  I am excited b/c I know he will love it and so will school.  Avery does not leave the house unless it is to go to the hospital or drs. appt.  But he loves for people to come and play with him.  Avery is all about him time.  So anything that will get him to interact with his teachers and therapists will be great.  Isaiah will love it too :)   We also got the boys an early Christmas gift...a 46inc. flat screen.  Since they are addicted to the tv, they are going to looove it.  I will love that Isaiah will no longer kick the crap out of the tv.  He is constantly kicking or touching the cable box which puts out the satellite and then it takes up to 30 mins to kick back on.  By that point he is crying for you to fix it.  Ugh.  So hopefully he will not craft some way of doing it to this tv since it will be mounted to the wall.  But ya never know with crazy man. 

So Janessa came home with her school pictures and I just about cried.  She looks 15 yrs old.  It is heartbreaking that my just 10yr  old looks so so grown up .  But she is beautiful :) 

So as you can see we are doing great but are crazy as ever.  I am hoping to spending a couple of hrs. with Rick tomorrow night.  He gets home so late with basketball and his other job that we barely see each other.  I should be used to it b/c he has been either playing or coaching in the 19yrs we have been together but it is always tough the first couple of weeks.  I do feel like a basketball widow, lol.  It is really hard balancing it all but we always manage to figure it out.  Even if it means Rick has to spend a liiitttttle extra money on his wifey for Christmas :) (that's actually a wink.......to make her happy.  Not that I am materialistic, but an Ipad would come in REAL handy for all those hospitalizations :) :)

It has been a long rough week for all of us.  I am happy it's the weekend b/c work was crazy for me.  I have hardly seen Rick b/c of Basketball tryouts and Avery has struggled throughout the week.  We have not even gotten a chance to decorate for Christmas. 

We had started a new nebulizer treatment for Avery called Pulmizyme.  It is mainly used in CF kids and supposed to break of the secretions.  The side affects are respiratory distress, shortness of breath and a 5% chance of pink eye.  How about Avery got all of the above symptoms.  Grrrr.  He has been in respiratory distress all week so we finally stopped it on Thurs.  I have been in contact with the home Critical Care dr. and he thought that maybe Avery came home prematurely.  I don't believe he did.  Avery is never going to come home "all fixed up".  He will always have respiratory issues and alot of which we can handle at home.  I told hime we could handle his issues right no but if we could not then we will bring him in.  I think he is better since stopping the med.  Although the dr. does want to go up on his home bipap settings which I think is a good idea.  He did have a low grade fever last night.  We are just going to have to watch that closely b/c he finishes his IV cipro tomorrow am.  I am confident that he can fight through whatever is going on with him.  He has good nursing care and we all try our best to keep him home as much as possible. 

In other news, the Starbucks (in Methuen) toy drive for Children's hospital is offically underway.  So if you are in the area and would like to bring an unwrapped gift such as DVDs for all ages, board games and baby toys it would really help Avery's unit at the hospital.  Plus you get to see Avery's cute picture with his favorite nurse Sarah :)

Back to the Grind

We are back to our super crazy life.  Basketball tryouts started this week which means Rick doesn't get home until 8pm and then he is in bed by 9pm.  I started back to work and have had a crazy amount of patients booked b/c I have been out for 6 weeks.  Yesterday's visit was packed with 46 patients.  Of course I only got to see 12 but man was I exhausted.  After taking 6 wks off, I imagine it is going to take a little bit to build my stamina back up.  I did notice that I was a little sore too, so I am gonna have to take things slow.  Although I have to say that it is very nice to be back b/c I just feel so much more productive. 

Things have been a little crazy with Avery at home.  First of all, there was a big mess up on his IV antibiotics.  He missed two doses b/c somebody obviously dropped the ball.  He did not get his next dose until over 30 hrs. after leaving the hospital.  Which is totally unacceptable. I am just nervous b/c he does not seem a ton better than being inpatient.  Maybe it is coincidence or not.  He is requiring the max O2 with his bipap and is just very junky overall.  On Monday he vomited his secretions and they were on the green side (which was different then we had been seeing inpatient).  He still has 3 more days left on the IV cipro and I hope it knocks the infection out b/c we are in for it if he gets febrile again.  Avery is just ALOT of work at home right now.  I am hoping with time he will get better.  His right eye is also very irritated.  He sleeps with his eyes open so I am not sure if something fell into it or not.   Poor kid.  So we could really use some positive thoughts for Mr. Avery. 

Here are some pictures of my sister and the kids.  I already miss them :(

Ness and Jeremiah, he's soo cute

Zay kept hitting Mia (don't mind her morning hairdo :) )

Miss thang (Demi) he he



Ness and Analeah who is getting so big



My sister is gonna kill me for this picture :)

auntie visiting Avery