We are all still adjusting to life at home. I think Janessa is actually having the most difficulty bc she was used to sleeping in Avery's bed while he was in the hospital. Since he has been home she is downstairs in her room and up with nightmares most of the night. She just doesn't like having her room downstairs but there is no other choice. Isaiah is doing well but back to his old tricks up pulling Avery's tubes. He actually just got approved for his tricycle and we are gearing him up to try a power wheelchair. So he will be putting his energy to good use. Milo is into everything. Definetely feel like I have a fourth child. Although it is very cute how well him and Isaiah get along.

Avery has been doing well but sleep is still a big issue despite his mega doses of narcotics. Otherwise he is pretty happy. Today was his first ivig infusion since leaving the hospital. We will check labs prior to next weeks infusion and if his platelets are low then we will certainly hold off. This is not ideal to keep up his levels to the point of fighting off infections but the alternative if what he just experience is not an option. The other issue is his heartrate now drops to the 50s when sleeping. This is very low for him and just not good overall. His norm is low 90s so we have been changing some if his meds in hopes of resolving it. Other than that he is doing well.

Hopefully we will be getting some good sleep around here soon :)

Finally back to our normal

Milo stealing Avery's pillow

All the boys hanging out watching Max & Ruby

Isaiah steam rolling Avery as usual

As you can see, life is back to "our normal" again.  It felt sooo good to walk out of that hospital, almost like we were starting a new life.  Although I got a bit teary eyed saying goodbye to ICP and ICU.  They saved my boy's life and were/are so good to him.  It was simply amazing to see this boy go from critically ill to walking out as if nothing ever happened.  I am so grateful. 

Avery had a cheer team once we pulled up in the driveway.  Grammy, Jim, my niece and the family (including Milo) were there to greet the little man.  Again the tears started.   I did give Avery the talk prior to leaving the hospital about him not being the only child in the Nault household and that he will have to share his attention.  Well after 6 weeks of it being all about him, I don't think he was listening to mom.  He is back to his "diva-like" self including the pouty lip.  Mr. Avery is very demanding but that is typical around here.  I am just happy to have everyone home under the same roof.  Although Janesss has been at a sleepover for the past two nights but at least we know she is coming home. 

Thank you all for your words of encouragement and prayers for the past 6 weeks.  We really appreciated them and it certainly helped our boy to be where he is today.  I am just hoping for a nonmedical hiatus.  Although I roped myself into doing a talk about the boys.  Apparently 4 drs. are presenting about the boys next month for the New England Mito foundation and I agreed to attend and talk about these silly boys.  I am hoping others can learn from them and possibly diagnose other kids with this disease.  But until then it is back to business for everyone.

Are We There Yet?

I feel like the little kid in the back of the car saying "Are we home yet?" over and over again..........

That is because I am sooo done with living in the hospital.  We are going on SIX weeks.  Seems like we just opened our pool, bought a new dog and pulled out the summer clothes.  Now here we are with a closing date on our pool, a trained dog and buying winter/fall clothes for the kids.   Ugh, cannot believe we missed the whole summer. 

Avery is doing great with the wean, thankfully.  I am hoping to be home no later than Sat. and I am sure he is too.  Although I think he believes this is his new home :(   It is going to take a bit for him to adjust to being home.  Janessa has been sleeping in his bed for the past 6wks so that is going to be a challenge to get her back downstairs in her own bed.  I imagine it will entail lots of whining about why her room is downstairs.  Isaiah and Milo have their own routine going on so it will be interesting to see how the "troublemakers' do with Avery being home. Poor Avery now has the both of them after him. 

I am just sooo happy that my boy has recovered from all of this and seems to be back to baseline.  It really is something to see how this kid went from critical condition to the boy he was a couple of months ago.  I even think he is happier than he was before.  I just cannot wait for all of us to get back to our normal routines and lives.  So much has fallen to the wayside since Avery has been in the hospital and we have alot of catching up to do. 

BTW, Rick and I had an AWESOME trip.  I truly think we have never laughed as much as we did last weekend.  We went with a great group of people and hope to do it again next yr only with a little more adventurous rapids (class IV & V).  It was great for us to be a couple again and to take a break from the medical side of things.  Avery had a fabulous weekend and had grandma there and great nurses :)


Hopefully the next time I post it will be a homecoming one.  So don't be surprised if you don't see anything for a few days.  As I don't anticipate much drama from now until then.  But I will leave you with the happy boy and his big sis.

The Home Stretch

Avery has been doing really well.  He has moved to his home unit (ICP) which is just a few doors down the hall but they know him very well and it is comforting to have him in his "homebase".  Some of the nurses in ICU were upset that Avery was leaving b/c typically if a child is on a drip of narcotics then they need to stay in ICU.  Seeing as the ICP knows him, they were more than comfortable to take him back.  Avery sure has won the hearts of many here.  It is nice to see that so many people care for him. 

He is off the versed and did really well with that. So now it is onto the fentanol.  They have increased his methadone (which is already a huge dose) in order to bring down the fentanol as they are in the same drug class.  I was not here this morning and one of the attendings decided that he should bring the fentanol down by 50% (on friday) and have him home by Monday.  I think this is far to aggressive for a kid like Avery who has already shown he is hypersensitive to any changes.  Why he thinks this will work for him is beyond me especially after all Avery has been through.  I think others agree. Plus, I do not feel comfortable with this plan with Rick and I leaving town over the weekend.  So I will definetly speak to the team during rounds in the am. 

The other issue is the IVIG which is still driving me crazy.  He brought up his platelet levels on his own which is great but the infusions are weekly and I just don't feel comfortable doing this at home and not knowing what is going on in his body.  I want him pretreated with steriods but the Immunologists say no.  Well then I think it is going to be a no to the infusions for me.  I just cannot have Avery go through this ever again.  Of course with the winter season coming and this hospital is already so crazy with sick kids, it makes me nervous to not do them too.  I am just stuck between a rock and a hard place on this whole thing.  I want to make sure I do what is best for Avery. Wish I knew what to do.

If all goes well with the fentanol wean then we expect Avery to be home sometime next week.  Woooohooo.  Just before the 6 week mark.  Cannot believe he has spent the summer inpatient. 

Rick and I are pretty excited about going on our rafting trip.  I am a little nervous being far away but Avery is in good hands for sure.  Here he is with his FAVORITE nurse :)  

It was a great weekend!!!!!

I was able to be home and spent time with the bigger kids, our crazy dog and have a date night out with Rick. I got Janessa's school shopping out of the way. She is such a big girl with her own taste in clothes so it was defintely interesting. Isaiah and Milo are quite the pair....Those boys are crazy partners in crime, I feel bad for Avery when he gets home. Milo will be eating all his wires while Zay pulls on what's left if them, lol.

Avery had a great weekend. He was very happy and looked great. He got his first subq IVIG on Friday and did well with it. Of course I was a nervous wreck bc he was the first one to try this new product at Childrens, eek. Although we are already starting to see a dip in his platelets so that will have to be watched closely. He was cracking up today with the music therapist but was completly confused by the clowns. Today was his first day off O2 and no bipap until tonight. So he was on room air and off bipap for 12 hrs today. This was huge for him considering drs. Were talking trach 2 weeks ago. He is almost off the versed and we will start the fentanol wean in a couple of days. I think this will be much more difficult in terms of withdrawals bc he has been on it since July 12th and it is a higher dose of methadone and they have already increased that. But who knows, he may surprise us. I sure hope so bc we have all had enough of the hospital.

Overall, he is making great strides and looks fabulous. I have given him the new name of the "Situation", I think he fits it much better than Mike on Jersey Shore. The nurses definetly agree with that. LoL. I am so proud of him.

Back a Few Steps

Avery has been making progress respiratory wise.  He is only on the bipap for naps and bedtime which of course he is not thrilled about.  During the day he is up in his wheelchair on nasal cannula at 3 liters which is a change from his norm.  He typically is not on any O2 during the day and sats fine.  I suspect with time he will be back to his baseline.

However the big demon we are facing and will keep us here for quite awhile is the sedation meds.  UGH!!!! He is still getting versed and fentanol continuously and on top of his increased methadone, Valium and clonodine.  The problem is he cannot go home on the versed or fentanol.  He typically is on the other meds and they have increased them but Avery has still been going through withdrawals.  He will sweat tremendously, have low grade fevers, dilated pupils, and screaming.  So obviously we cannot have him go through withdrawals but he needs to come off those meds.  The drs. are hoping with increasing his Valium and methadone that they can slowly decrease the meds.  It just all depends on Avery and what he will allow.  We could be here for at least another 2-3weeks.  While I know it has to be done safely and we have no choice, it is so frustrating that we could be here for 8 weeks over something that was totally preventable.  Again I use that word.......As you can see I am still upset that Avery and our family had to endure all this. 

Although I have decided to try IVIG again but doing it through the skin instead of IV.  This is supposed to be safer.  Of course I am a nervous wreck about it but it is something that Avery depends on.  Especially since he is more vulnerable to infection with living in the hospital.  His levels have declined to the point of him needing these infusions again.  Please pray that he has no issues with it.

It is at the point now that I am going to have to leave Avery at the hospital more b/c I have to spend sometime with Janessa and Isaiah and still work.  Basically our summer has been spent inpatient and it totally sucks.  Rick and I have been planning a white water rafting trip with some friends and we are still going.  We really need the time together to get a break from the medical world and just be a couple for the weekend.  Avery has been on the unit long enough for the nurses to know him so well which makes it easier for us to leave him.  I also want to take Ness to an amusement park and school shopping before the summer is over. 

Small strides

Avery continues to improve a bit everyday.  I took Isaiah, Ness and a nurse to visit him on sat. and he was tired by the time we got there but we did see a brief smile between the boys.  Isaiah of course is never thrilled to be out let alone in a hospital setting.  He gives you the "are you kidding me" look and once he starts retching then you know it is time to go.  I did think it was important that the boys see each other even for a brief visit.  I guess it made me feel better too. 

This is going to be a tough week because I of course have to work and Rick has camp all week.  He has been doing this camp since he was a kid and it lasts until at least 11p Mon-thurs.  So unfortunately, Avery will have to hang out somedays on his own.  I feel guilty as all hell but what can you do.  I will be there daily after 3p and will sleep there nightly.  We have comfort knowing that the unit now knows him pretty well and that he is in good hands.  This is such a long hospitalization for our family and life goes on but it doesn't make it any easier on all of us.  Today I have to take Ness to do some work with me then we are off to hang out for the day at the hospital.  I wish I could take her to a water park orr something but instead its hanging out at the hospital.  Guess she can catch up on her summer reading.

Avery has a nice schedule with his bipap and O2.  He comes off at 8am and is up sitting in his chair and then back on at 12-2p, then back off until 6p for bedtime.  He is completing both courses of antibiotics and they are starting to slowly wean his versed.  The fentanol will be next and I fear that it will be a much slower process.  I am definetly feeling that there is a light at the end of this tunnel finally.  Although it may not be for a couple of weeks but at least I can see it.  Avery is such a trooper and is working so hard.  He sure surprised all the drs.  We just cannot wait to have him home soon and have our lives back to our normal.