Emotional Rollercoaster

Is the best way I can describe the past month....

I will start with the good emotions:

Happiness: I have no idea what we have done but Avery's fluid issues have seemed to resolved themselves for the time being.  His weight has been pretty good and his urine output has been better than it has in weeks.  We have done nothing different at all.  He hasn't even need a dose of IV lasix (Thank God), especially since everyone is so freaked out about it.  I mean I know it is a big deal but he did very well with it and is being watched very closely.  His labs that I drew yesterday were great.  I am just so happy he is good right now.  I can only hope and pray that it lasts.

Another thing that makes me smile is that the boys will be riding the school bus together.  Just makes my heart smile :) Although Avery will only be going 2 days a week, he will still ride with Isaiah.  They will also be going to two different schools.  It works out and I am so happy they get to be together.

We had a good weekend rafting.  I cannot say how therapeutic it is for Rick and myself to do normal things with other couples.  Plus, we really need our time away.  It was such a beautiful place and the rafting was CRAZY.  Our raft flipped over (all 8 of us) but we survived and honestly that made it so worth it.  I am just happy we are surrounded by such good people. 

Ok now onto the bad feeling.......

Sadness: My good friend Debbie from Canada lost her daughter Jaiden on Friday.  It is so heartbreaking and no parent should have to go through this especially twice.  They are such great people and wonderful advocates for their children.  They need your prayers to be able to get through this difficult time.  Rick suggested I go see her in the next couple of weeks as a birthday gift and I thought that was so good of him.  We share a bond like no other and I want to be there for her, if only for a weekend. 

Fear: that my boy is slipping away from us.  Sure he is doing great right now but the level of his care has changed so dramatically.  Anything could take his precious life at this point and it tears me and Rick apart.  Who would have ever thought that our dinner conversation would consist of us planning our baby boy's funeral.  But it does and THAT is our reality and it sucks big time. 

Confusion: the whole Make a Wish trip this Fall.  I am leaning towards not going.  Who am I doing it for us or the boys? Rick, me and Nessa can go on a trip anytime.  Let's face it, Isaiah hates being away from his tv for 5 minutes let alone getting on an airplane where he has NO idea where the heck he is going. He will be retching his guts out for a couple of days.  Then you have Avery who could very quickly go into a respiratory crisis either in the security line or on the airplane.  We would end up bagging him as we enter the plane.  Now does that sound like fun, I think not.!!!! He would be perfectly happy going to an Elmo show and so would Isaiah.  I don't want to make his situation worse b/c we felt like we needed to go on a family trip b/c the reality is that is not for our family. So while it sucks I feel that it is best for Avery and Isaiah. 

I think this about sums up my feelings over the past couple of weeks.  You know we are heading into Mitochondrial Awareness month and I find it so sad that in the past year we have lost about a dozen kids that I know just from online and in-person interactions.  We just really need to find a cure for this horrible disease b/c it just destroys lives including ours :(

Home

We have actually been home since yesterday but the transition is always crazy so blogging is the last thing on my mind. I have to say that this homecoming was much smoother than the last two. He is not as sick coming home, although getting his lasix orders finalized is crazy.

Over the weekend Avery did very well without lasix, actually much better than I expected. But he did require more fluids. So now his IV nutrition went from 16 hrs. a day to 20hrs to see if his body will tolerate it better. In the past few days he has shown that it is working. However we still have lasix (IV) in our back pockets. While this can be a scary med at hone and certainly not typical. Avery was monitored very closely inpatient on it and was very stable. So the team feels it's completely safe and effective. It will also keep us at home with close monitoring. Well once we were released seems the outpatient teams are freaking out which pisses me off. We nor I would do anything with Avery if it were unsafe. Everything is very thought out or we wouldn't go home. So orders have been changed bc people are trying to Cover their own asses and not what is in the best interest of my own family.

Anyway this has turned into a total rant but what r ya gonna do!!!

Just happy to have my lil man at home....

I hadn't even realized it's been a week with no update, Eek. Things have been a bit confusing from a medical standpoint so I'm going to try to speak in layman terms. Avery has been here for a week and I can't really say that we have accomplished a ton except his lungs are less wet. Which means he is better from a respiratory standpoint. It's all about the balance of his lungs vs. his kidneys. He has been requiring up to two to three doses of IV lasix (takes the excess fluids off his body) a day. Without the lasix he is not producing any urine at all, therefore his weight is increased in the am up to three pounds from the evening. This has to be watched closely because we know that any excess weight or fluid he has goes directly into his lungs. So we have been spending the week playing with his fluids as well as the lasix. Currently, his kidneys think he is dehydrated so any fluids he he takes in them store them but the rest he third spaces (leak) into his lungs. Surprisingly, he is very happy (even lost another tooth, poor kid is all gums) and he doesn't sound too wet which is very good. But we know the kind of kid Avery is, he can flip the script at any moment.

Last night we were home and the renal dr. that has been consulting on the case called me. What a nice guy. He explained a lot, and he felt that in fact Avery's kidneys were pretty "smart". That is why they are holding onto the fluid bc they think they need it. Some testing he did confirmed that but he said the lasix he has been getting also taint the test. Although he does not know why he is not urinating without lasix and is third spacing into his lungs. I told him it's likely mito related and also bc all the vessels around his head and neck are completely stenotic and he didn't disagree with that. His recommendation is to completely stop all lasix and wait and see. We know he will go over 24 hrs with little urine and be much heavier in the am but he feels if it's not affecting him respiratory wise then to just ride it out. He wants to be sure he actually needs lasix before testing it out without them. I do agree but it is going tough weekend for him and I'm so glad this is getting done inpatient. Again, there is a good possibility his body needs the lasix but he doesn't know why. If he needs it then he does. It's just another big intervention for home especially with a kid like Avery so I would like to avoid it if we can.

Hope you guys were able to understand at least some of it bc I'm not sure if I even get it myself. I'm hoping we get get things squared away by mid next week. Rick and I are going on our annual white water rafting trip it I would feel better if he was back to baseline while we are gone. I know wishful thinking!!! Only time will tell.

Please check out this video montage that we have started and let me know what you think?????

To say this has been a tough week for our family is a complete understatement!!!. Since Avery came home last Friday we (nurses included) having been running a critical care unit. He has been so very respiratory had due to fluid overload. His weight in the morning is b/t 3-5 lbs heavier than in the evening and as a result has been so wet in the lungs. I had been communicating all week with drs. at Children's but felt he was stable enough to be home. Looking back I was definitely out of my mind. Even Janessa knew as she said a number of times throughout the week that Avery needed to go back to the hospital. Sad huh, my 10 yr old knows better than me. Adding to the stress of trying to keep Avery stable is Rick was at a basketball camp that he has done for the past 30yrs. He was not home until 12am every evening so I was on my own and it was taking it's toll on me.  Also, my job had made a big announcement on Monday that they were laying off a ton of people so now more than ever I need to be going to work. On Tues Avery started out the morning rough but I had to go to work for a few hrs and felt my nurse could handle him and she did but nonetheless I felt anxious (what a horrible feeling). I basically said that if he gets bad just call 911.  Not good.

By the end of the week I promised to the nurse practioner I would take Avery to the pediatrian and decide from there if he should be admitted or not.  He had very stable times and once he was alseep on bipap he was fine so that is why I felt he was ok to still be home.Well that is when it all gets interesting!!!! I thankfully had my nurse with me. Avery was already sounding wet in the morning so I "think" I knew he was going in. By the time he arrived (25 min) drive, the decision was made bc here me and my nurse are bagging Avery in the parking lot with O2, sat monitor that is constantly going off. I mean we must have look like a bunch of crazy woman with this poor sick kid. So we get him stabilized and grab our to go crash cart and calming walk in where I tell the front desk staff that they will be needing to call an ambulance for us. They took one look at him and said " I guess". So we get back to a room and he starts up again and I now have to yell for the dr. Who sprints in the room and I'm sure is ready to have a heart attack. Poor guy. Now by this point my nurse and I have been doing this all week so we were very calm but I know he thought we were out of our minds which I'm sure we were. He calmly or least "acted" calmly as to not alarm his patients that were there for ear infections and what not. He then has a nurse quietly bring the code cart which he no longer needed bc I got a good suction and brought his sats to the high 90s. By this point you could hear the loud sirens ( so much for keeping this quiet) and we were on our way. Of course Avery now looks like a million bucks... Upon leaving the pedi wanted to try to get Avery directly admitted to the unit to which I said "good luck on that one" .

So now Avery and I are in the ambulance with sirens ( 1st time) bc of the Red Sox/ Yankees game, lol. Avery is happy and breathing on room air. We arrive at the ER and what do ya know, we are directly admitted....WTG Dr. R. The attending said Avery has the VIP pass, lol. Actually we got lucky there were open beds but I was happy either way. The dr. had a heads up of what was going on at home bc of all the logged in calls and they were shocked he lasted this long at home. Even though he looked great on arrival his chest xray was horrible. His lungs were full of fluid. I now feel so so bad that we let him struggle that long at home. We do so much at home that it is getting more and more difficult to find the line of when to take him in. At this point I feel relief that he is there. It was more than all of us should be handling at home especially my nurses who did an awesome job of keeping him stable. I
Really don't know how long he will be in and I'm not going to rush it. He needs to get better. I am just really getting sad, nervous, and scared that he is slipping further away from us and this is why I fight so hard to keep him home with us.

As I go through my own turmoil, I am completely heartbroken for my dear friend Debbie White and her family. They have taken their daughter Jaiden of all supports and are saying goodbye to their beautiful princess. It's awful. Her and I have had many conversations about the passing of our babies and I am just so sad that they have to go through this. Please send the White family who have a son Logan and another daughter Marlo also with progressive mito and her husband Scott prayers in the coming days, weeks and months. Nothing about what we deal with is right or fair, it just isn't....

The "Crazy" in our Normal life

We did make it home on Friday early afternoon but man did I need a shot of something after that caride home!!!! At this point, I can no longer drive Avery to and from the hospital alone. He is just too sick. Let's face it, what kid comes home straight from ICU in baseline condition. Umm, not my kid. He was a plain ole "hot mess". Janessa even commented an hr into our craziness of settling him in home " I don't think he was ready to come home mom". But at this point we know Avery's new baseline after each hospitalization is going to be "sicker". But still we choose to take him home because we know that is where he is the happiest. No matter how rough his day is at home, when you put him in his bed he has this smile that confirms where he wants to be.

That being said, the past few days have been an ICU treatment facility in the Nault household. Avery's oxygen levels have dropped so low that even at Children's ICU they would be nervous. For now we have been able to stabilize him by drawing labs, giving extra IV fluids and measuring inputs/outputs. These are all things that are completely foreign to most people but have become a normal way to keep our boy at home. Sure he makes my heart race while we are doing these crazy interventions, all the while Isaiah has gotten himself stuck in some obscure place and the dog is eating one of my towels while Janessa is asking me to do something for her. But it still beats sitting in a hospital waiting for someone to suction your child and eating the same food everyday and looking forward to rounds and young drs. Giving you permission to go home.

So hopefully we will be able to rough this storm at home with the help of drs and nurses from Children's bc in the end that is where a family should be!!!!