Yesterday was Crazy

We went to the pulm. dr. (remember the one with all the crazy comments), well she still had alot of the crazy comments. Basically she said that they have no ideas for helping Avery at this point and was trying to give me everything under the kitchen sink to keep him out of the hospital. So sad. We are trialing prednisone, sudafed (she even suggested caffiene), they adjusted his bipap and increased his o2 requirements for sleeping. They also referred to him as the baby that had the ER in a panic. Nice huh,

We also discussed again some end of life issues such as intubation and what our thoughts and wishes were. Not your typical topic unless you are at the point we are at. It is surreal I tell ya.

We got home and Avery was totally exhausted which made for a bad afternoon. We was in distress b/c he had 3 large mucous plugs which it took 2 nurses to get up while he had periods of turning blue. It is really like a scene out of ER in my house these days. We have everything we need at home exception equipment to intubate. LOL. Okay I know it sounds crazy and unreal that I am talking like this BUT...... it is my normal crazy life.

Once he finally settled down last night the respiratory therapist came to the house and showed us some techniques. I really value their opinion b/c they are in the trenches with kids like Avery and know so much. So she basically said that with kids as progressed like Avery that we have some hard decisions coming up (like him wearing the bipap fulltime, it is just something you really reflect on as another reality check that this baby is GOING to DIE and as much as I say it is still so hard to swollow. This disease has spread like a wildfire. It's like I don't even have time to catch my breath before another crisis hits.

So at this point he is on bipap and o2 for sleeping at all times. We will just see what the next step is and take it day by day and moment by moment.

It is hard..........

It was so good to get uninterrupted sleep at the hotel last night. I really think we are going to do this 2x a month. We were only 5 mins down the road which was nice too. So glad we were night home b/c apparently the boys were both up playing last night. Yikes.....

Avery had a pretty good weekend. He is still requiring night o2 and even some during naps. We are in to see the pulmonologist in the morning. I am bringing his bipap in b/c I think it needs adjustment b/c he is desatting while on it and requiring 4-5 liters of o2 to keep his sats above 95%. I will be interested to hear her thoughts compared to our last visit before the recent hospitalization and changes. I am sure it won't be earth shattering but I still like to hear her thoughts on things.

Hopefully the agency will start getting night nursing in, we just have to start rearranging the boys rooms to separate them b/c I don't want Isaiah woken up by the nurses and Rick and I would like to maintain our privacy. So we have some figuring out to do with the room. Luckily we have 4 bedrooms and a separate living area downstairs.

So nothing else too exciting these days.

The last couple of nights have been horrendous. I have not slept much at all, Avery has been up hrly screaming or he he desatting. I am pretty much a zombie. It is just so difficult b/c despite my fatigue, I HAVE to work or go to drs. appts. People always say " I don't know how you work and take care of your family". It's not a matter of choice but a necessity. If I don't work, then we don't survive finanically. So it is alot of pressure. Now don't get me wrong, I like tha fact that I have a career and work. It gives me my individuality and I know I can always take care of myself. But at the same time after not sleeping for days, I surely wish I had the choice of not working. But it does not work that way.

There is a light at the end of the tunnel. My nursing case manager came out today to evaluate the boys hrs. Isaiah's hrs. stayed the same which were fine and Avery got a huge increase in hrs. So now I can get 6 night of nursing and not comprise my day hrs. I have one of my nurse covering a couple of nights and I have already called an agency which will cover the remainder of the hrs. So it will be an adjustment and alot of moving around of the rooms but sleep is so much more important at this point.

Boy you really don't realize how much care your kids are until you have to lay it out to someone else. The poor woman was so overwhelmed by all the care and hospitalizations.

Also I am having my nurse start tomorrow night and Rick and I are renting a hotel just to sleep. Cannot wait.

On a HUGE positive note. My sister had a healthy baby girl on thurs. Demi Alexandria born weight 6 pounds and 11 ounces. All is well and she sure is a cutie. Can't wait to meet her. Congrats to the family. We love you all.

Update

I could really jump off a bridge right now but I actually have no energy so falling over would be my next option. Well, it is not that bad But... I have literally not slept in days and still working.

Avery was up all night last night. Took him to the pedi's today and ran some lab work. Turns out his hemoglobin is fine but his WBC his very high indicating an infection. Not sure if it viral or bacterial but from looking at his labs from a few weeks ago it could be bacterial. Of course they wanted me to run him into Children's, which I have not. He is not running a fever and actually looks slightly better. They ran blood cultures so I am just going to wait it out until he starts showing that he is sick. I know this sounds bad but I just am so sick of being in that hospital and I don't feel it is warranted yet.

My nurse's father died last night. She will be out for a few days. I feel so bad for her b/c it was kinda sudden. My prayers are with her and her family.

Isaiah is back to retching pretty bad today. I just really want to pull out my hair.

So as you might expect, no concert for Rick and I. Yet again we have to cancel plans. Sometimes this is the most frustrating part about this life that we cannot complete any plans. I just give up on making plans with people anymore b/c I usually end up in the hospital.

I just really really hope to get some sleep tonight b/c if not I think I will die of exhaustion if not.

I am pretty worried about Avery. He has been soo irritable of the past few days and sleeping so much. He sleeps at night even though he is desatting and by 10 am he is ready for a nap, then he will go back down at noon and sleep until 3pm and then is crying to go to bed at 4pm. My nurse today thought he looked a little yellowish (jaundice=liver issues) Rick thought he looked very paile. I can't tell b/c I see him everyday.

His hemoglobin and hemocrit (RBC) were low in the last few admissions. So I am concerned that he is really anemic. He has already has had a few blood transfusions. I am also wondering if this is why he is desatting b/c RBCs carry O2. I know a bit technical but it's just how I have learned to talk since having my boys.

So the plan will be to take him to the pedi's for bloodwork. Hopefully it is a false alarm. Rick and I are supposed to be going to the concert tomorrow night, so sure hope I don't end up in the ER instead. I will keep you all posted.

I am absolutely exhausted. Avery slept really well last night but his O2 monitor was going off like crazy, he kept desatting in the low 80s b/c the O2 that was hooked up kept falling off. Then by 3 am his bipap tubing became detached so I just took it off. Then he was desatting again so I resorted to the O2 mask and he was good until 5am them he was crying b/c he wanted it off and by that point I was toast and it was time to get up for the day. Thankfully one of my nurses is going to be doing a couple of overnights for me. Even if I get sleep a couple of times a week, it is certainly better than nothing.

Like I predicted with Isaiah, he came home from school retching his little heart out. Hopefully it is short lived.

Avery had a pretty crappy day today but hopefully his night is not a repeat of last night. Bad part about it is he now is requiring nightly o2 and probably has needed it in a long time.

Mind you, I worked and saw 15 patients (dragging), did a personal training session at the gym which was sheer hell and then off to hip-hop.

Just a day in the life........

I am in better spirits today. Man, I hate being down. It is just not me and it is exhausting to feel that way. A week is long enough for me. I haven't been a total downer, I have been still going to the gym and laughing at my kids and all that but just don't care to hang out as much. It is just difficult when you see and hear all of these other mito kids so sick and you wonder are you going to be next. My heart breaks for all of these families but it does feel like the shadow of death is looming. But enough of that....

Avery had a great day earlier and was happy and laughing b/c he was able to knock down a water bottle himself. Think he was pretty proud of himself and so was I.

Isaiah was very low key today, not really smiling much so I certainly hope the "M" thing is not coming soon.

Janessa is soon to be 8 yrs. old on Oct. 5 and she has already planned her party, I suppose I just need to show up and buy everything. She kills me b/c she has the whole neighborhood (6 other kids) doing tasks for her party. Hmmm, wonder where she gets that personality trait from. It's debatable b/t Rick and I. LOL

Speaking of Rick and I, we are going to see Robin Thicke at the Showcase Live on Wed. which is a piano type bar place where the Patriots play. I am looking forward to it. I am sure Rick has NO idea who the guy even is but that's okay b/c I do. LOL.

Thanks for the prayer for Landon, he is such a fighter he seems to have turned a corner for the better. Praise the Lord.

Prayers are needed for my friend Debbie, Marlo is in the hospital right now and Jaiden is not feeling so well at home. Big hugs to you girl.

ALso praying and excitement for my new neice who will be making her appearance into the world on Thurs. I am sad b/c I saw my last neice born and I will miss this one. I am there in spirit and am very happy for you guys. Praying for a smooth birth. Can't wait to see her. Hugs for all of us.

Looks like we are out of the woods for the night. He woke up sounding much better. Although he was only up for an hr. before he was back to sleep for the night. So something is still not right. Guess we will just watch and see.

Still picking my Heart off the ground

Avery just gave me a my nurse a HUGE scare. He has not been right since yesterday and we have not been able to foot our finger on it. He was so very junky all day today and he gets panicky about not being able to clear his secretions. His secretions are very thick right now and even with suctioning he is still not clearing. We decided to put him on the bipap machine for a nap and he freak (even with ativan). Once we settled him down and he had it on, he was sleeping and breathing VERY shallow and was satting between 81-83% with 5 liters of o2. He was very pale and blue around the lips. I had my fingers on the phone to dial 911 and the nurse was arousing him and repositioned the mask and he came up to 98% and has been fine since. He is still sleeping and satting well.

I am nervous of how he is going to be when he wakes up. Hopefully he is back to baseline. Again, bag is already pack and if he starts out like this at all for bedtime then we will be off to the hospital.

No rest for the worry.

So to say this has been a tough week for ME mentally is an understatement. I am really reeling from last weeks hospitalization and the reality of what is to be. Sure I don't know when? or How? but I do know it is to be. Which is inevietable for us all right? But when it comes to the death of your child, no matter HOW it happens, frankly, there is just no preparing for it. I mean I keep thinking I am preparing myself and people say "Wow, you have such a good attitude about it". I are serious, How is there having a good attitude about the death of your child. Sometimes people say the dumbest things. I get that they don't mean it and have no idea what to say. But I have to say the worst is "God doesn't give you more than you can handle". This I at times have a really difficult time with, in general. Lately, I have no tolerance for people and their problems and mind you and I aka as the counselor but this week. Uh Uh, Ixney on that one for the week.

SO if you haven't already figured out this is a total whoa is me rant, which I am totally allow to have and often don't. But is soooo sucks to be loosing a child. It is not how things are supposed to work.

Honestly, I just don't feel like I can relate to many other except those who are going through or have gone through what I will. I honestly don't mean to offend anybody. But as you know, I am going to be REAL about things and why I started this blog.

Avery had a great week, well except today. So it is like you are always waiting for the other shoe to drop. It is really difficult for me b/c so many people around me are having babies (which I am excited for them) but at the same time feel sooo robbed. Out of 3 kids, we may only be left with 1. Now is that fair. I say, HELL NAW....

Also, I have a problem currently with people saying "You are so strong" I mean what does that mean? That I am not breaking down crying? What? Such a standard to live by! I know that they are only complimenting me but..... That is one of those weird statements for me lately.

Granted, I truley know all of my blessing but I would not be normal if I did not show the negative side of me, RIGHT.....

As a friend said recently, My heart goes out to all the families experiencing the loss of a child or the loss of a "normal life" b/c of a child's disabilities. There is nothing like it. Hugs to all.

On a side note, this was the week for me to just cry to my mom and I am not a crier and not super close to my mom. But.... I let her know that I was feeling down and she sent me an edible flower basket "to brighten up my day" and it sure did. I told her that she was a great mom and she cried b/c she felt like there was nothing she could do for me and I felt like she did what I needed for the day.

Again, sorry so blunt but you know that is me.

Just Me and the Boys Today

No nurse today so no work for me. Boy, I forget how it is during the week with them and their schedules. I really give my nurses tons of credit. Mr. Avery is VERY demanding of attention at all times. But we did get out this morning while Isaiah was at school and ran some errands. Have to say that it doesn't happen that I get to go out with Avery much these days so it was really nice. Once Isaiah was on it is time to put the running shoes on. LOL.

It was really nice though b/c I had them both cracking up laughing. They both laugh at the same thing. Me dropping something off my head. Man does the laughter of these two amazing boys put life in to perspective for ya. It REALLY makes you appreciate the very simplest of things. I just love them so very much and have been blessed that God chose me to be their mother.

But... I do like working, and am glad to I have people to take care of them so I can work.

Here are the happy boys. Oops, sorry it is upside down!!!!! But they are still cute.

It's been a quiet weekend. Avery continues to do well, thankfully. We started him on the Bipap and he has done pretty well. This really seems to give him some energy during the day. I really think alot of his respiratory issues are made worse by his anxieties so hopefully we can keep those at bay.

I trained a new nurse and I think she will be a great addition to the team. She has a nice calm way with Avery and is great with Isaiah.

I got a social worker from the pallative team and she is coming out to see Janessa twice a month. Of course she is so excited about this and it will be great for her.

Me, I am doing okay. I am in a good place right now. I know that it "it is what it is" and I am going to roll with it and take things day by day. I am enjoying when he feels good.

Isaiah has been having alot more retching spells lately but is doing great otherwise. You can always rely on his great smile when you are feeling down.

Please continue to pray for Landon.

Home Again

So Mr. Avery showed my up again. Crazy boy had a sleep study on Thurs to prove to the insurance company that he needs the bipap. After 3 nights straight of bipap, think he was well rested and decided he didn't need it. UGH. He never desatted nor needed bipap which was good and bad. We spent most of the day on Friday trying to get approved by the insurance company. I actually had the equipment on hand and the rep. was going to take it with him. There was no way THAT was happening as I just spent a week there for nothing if I did not get it.

Turns out our case worker looked into our insurance and no prior approval for needed for kids under 18. Are ya kidding me?? He actually did not even need the sleep study. LOL. But the drs. said he clearly has obstructions and needs it and did not feel comfortable sending us home without it. So we have a new piece of equipment.

Avery is sooo happy to be home and in a great mood. I hope this bipap will really improved his quality of life. I tell ya, these mito kids are just fighters and they can go from literally being on the brink of death to a complete turn around no matter how tired there body is.

Also, our neuro has been doing some research and thinks the boys may have Pyruvate Dehydrogenase Phospate Deficiency which is similar to what they previsouly thought. So they took a chunk out of Avery's skin yesterday and are sending it to Canada to be studied. Now if they are positive for this it will be great b/c a mutation WILL be known which is what we wanted for Janessa and her future family. They would be one of about 4-5 in the world with this dx. Told ya my kids would be famous, LOL. It also means that Avery which I already knew came to us for a direct purpose, not only to bring so much good in our lives but to find a mutuation for us and a proper dx and I am certain that will happen.

Also they tested him for Cystic Fibrosis which I was a bit nervous b/c he fit it but that was negative, thankfully. Like I said, I don't think my luck is THAT bad.

Anyways, thanks for all the prayers. Could you guys spare some more for Landon who is a fellow mito guy who is fighting for his life right now will there is Hurricane Ike reeking havoric outside http://www.caringbridge.org/visit/landonweber

Avery on Bipap and Off it

I know it looks bad but he is certainly much happier after he uses it. Isn't he so darn cute. The teeth and hair kills me.

We are in the Hospital AGAIN

As you read a few days ago, Avery was having trouble keeping up his o2 at night. The next day I called the pulm. dr. and she was very concerned and wanted me to bring him in which I was not overly thrilled about. I bring him in the afternoon and he was fine but the minute we rolled into the ER he started with a panic attack (hypoventilating) so dr. see this and start immediately freaking out. Of course he got much worse with his breathing b/c he was so stressed by this point. He got so bad that he totally dropped his heartrate which was very scary and the drs. said they were intubating him which I did not want b/c once he is intubated we will have a tough decision to make if he cannot get off of the machine.

We are in ICU where we were thankfully able to avoid intubation b/ he finally settled down. My little fighter. He is now on BIPAP which he has to get ativan to tolerate. It is a pressure machine with this horrible mask that he hates. He will go home with this at night to help him breath and give him more energy during the day. Basically this is as invasive as we will go at this point. The fact of the matter is God is going to be calling for Mr. Avery much sooner than I EVER thought or could imagine and I have no control over it. But Rick and I can chose to give him some quality of life. We will not do anything more invasive than that. My heart is just aching and so is Rick's. My little guy's body is just getting tired and I just don't want to see him suffer. He will tell us when he is ready to go and I just don't know how I will be when that time comes. SO we are just gonna love him and give him all the hugs we can.

We have started to talk to Janessa about this as well which is so very difficult. We are also going to get a grief counselor in at some point for her.

We should be home in a few days with new equipment and less sleep at night. We are going to be getting night nursing which you all know I am NOT thrilled about but we will see how he does. The other sucky thing is everytime he is sick we will have to bring him inpatient to adjust the setting on his bipap.

Thanks for reading.

As you can see from the pictures, Isaiah was soo thrilled to see his house. That was the first time he had seen it. It came out great. It was not have been possible if it were not for Mike, he is an electrician and a friend our Rick's. Thank you so very much, he also wired the lift which is no needed at this point. Thanks again Mike and MAW and also a special donor who gave the money for the lift.

So that was all the good news right!!!

Well onto the bad news. Avery is now requiring O2 at night which is very new for him. He is having trouble keeping his sats above 90 while sleeping. He had another tough Friday night and I was not home so between my nurse and Rick, they worked it out w/out going to the hospital. Unfortunately he hates the nasal cannula so I had to give him ativan just to quiet him down to wear it b/c he really needs it. Mind you he had a great day yesterday without needing suctioning or interventions and still desatting for bedtime. So it sounds if he will really need the Bipap, just sounds like he will not like that either.

In the meantime, this also means that we are not getting very much sleep at night. Rick and I get up about 5x a night with him. We alternate who's turn it is. LOL. I hate not getting sleep right now. Eventually we are going to have to get night nursing which I am not at all thrilled about. I still want my home to be my home and not a hospital. I love my nurses but I don't want my house overtaken by nurses, KWIM? Hopefully we can ride through this and see some improvements. I sure hope so.

more pictures

Isaiah's MAW house and Lift pictures

WARNING, A bit depressing!!!!!!

So you have probably noticed that I have been talking about my concerns for Avery this winter. Well it kit me today in the car. What if he goes into the hospital and does not come home b/c of another pneumonia for a cold or something respiratory. THIS IS A REALITY, people. This last disharge, they drs. do a very descriptive write up about his stay. There was alot in there about his respiratory decompensation in a short time and they FINALLY mention that he was dx with LEIGH's disease which they have never written. This time when I was in, they gave me with choice of whether I wanted to bring him home and even though he didn't look great. They know he is pallative care now. Another depressing fact. Then you get all of the head nods with a look of "I am sorry" from the drs. when you say that he looks worse. Yet another reality.

It is inevitable and yet there is NOTHING I can do about it. I just don't know how I am going to handle it. Avery has brought so much caios to our lives but it is our caios and what will we do without it. I can't even imagine it. It will be so sad.

When you get married and have babies all you think about is the wonderful things but never do you think that you will bury them way before their time. It sooooo sucks. It surely has given me such a new perspective on life and what I will and won't settle for. It is all about happiness which is NOT material happiness either but having good people around you and laughing and loving and doing good by others.

Anyway, this was my WAH, WAH of the day. You can pick your mouths up off the floor now. I told you it would be depressing. But it IS my normal. I will just love him with everything I have in my and do right by him is all I can do, RIGHT?

I had a great birthday today. Although it started out a bit sleep deprived as Avery has not been sleeping well at all since coming home. Went to dinner with Rick, Ness and my MIL and her boyfriend. Rick surprised me with a beautiful watch. This sure beats last yr when I was in the hospital with Avery. So we just about made it hospital free.

Avery was still working really hard today, requiring lots of deep suctioning and other interventions. He does not seem to be recovery all that great. Sure hope he does not end up back in the hospital. Friday nights seem to be his worse days. I talked to the pulm. nurse about getting a planned stay to trial Cipap and she is getting the ball rolling on it. Hope it can make a difference for him. The mask seems to be the biggest feat of it.

Kids both had a good first day of school. Isaiah was retching a bit but I think since we switched him back to his regular formula, he will be feeling better by tomorrow.

Back to school tomorrow, YAY.........................................................

and...........

HAPPY BIRTHDAY TO ME. IT'S THE BIG 35, YIKES..

Naw, I am still young even though I have been through ALOT in my life and have grown in so many ways. I am finally at the point that I know myself and all my faults and am all good with Nicky. Rick took me for a nice little shopping spree last night which is always good.


Poor Isaiah has been retching on/off for a few days b/c the nutritionist said he was much too thin and gave him alot more calories. Well that apparently did not agree with his body so we are going back to his old recipe. I certainly don't want him starting his first day of school being a wreck. So hopefully he is back to his normal self tomorrow.

Avery is still a complete mess. This pneumonia and pseudomonas is kicking his butt for sure. He is working pretty hard to breath and wheezing. I think he feels like such crap. Poor kid. His winter is going to be so very tough. As it is we just barely keep him out of the hospital. Hopefully he recovers soon and is able to enjoy some peace.

My Skinny Husband

Forgive him for the flip flops, he just got this outfit in a MUCH smaller size than he is used to.

Avery's home getting TLC and Chest PT

Pictures of Our Visitors