Warning mad elephant...

My mom was watching TV the other day and saw this scene from Dumbo. She said it reminded her of you and I and I agree.

This is exactly how I feel.

Jailed. Locked away from my baby. Locked away from our lives.

I even think the "danger" and the "mad elephant" signs are very fitting. At least I think the Dr's, and nurses sometimes think so.

I know sometimes I feel like a "mad elephant" fighting to protect her child.

I'm tired. Tired of fighting, tired of being thought of as a bitch, or at least difficult, by the medical staff.

I'm hitting an emotional and physical wall more and more often and sometimes I just don't think I can do this another minute.

But it only last for a while. Usually till I'm with you.

It's amazing how my love for you fills me and heals me. I know I am where I am meant to be. You are far beyond worth everything this is costing.

I know your Dad and I will keep on going till we have you home and well. As long as it takes.

But I'm seriously wondering if someday, in the distant future, when we are back on even ground again if I won't go through some kind of post traumatic stress from all of this.

I might just have to take a mental break or something and deal with all these emotions I'm just pushing aside that I don't have the energy or time to deal with.

Ah well, I doubt I'll ever have the time.

I don't think I will ever be able to watch Dumbo again without having flashbacks though.

*******************************************

So anyway on to you....

Your breathing has improved a lot but I honestly can't say if it's better than before the surgery or not. We still have hope that you just need more time to heal and, with time, we might see a great improvement. But both your dad and I feel we haven't seen anything yet to make us think there has been any great change in your breathing.

Today Monday, the last day of February, your still on the vent through the nasal cannula. We are decreasing the support a little everyday and your labs have been pretty good but not great.

We are going to give it another week to see what happens. Maybe things will change. I has only been a week today since your surgery.

I just can't let my heart hope. It hurts too much to hope right now.

Since I haven't taken any pics lately. I'm posting some videos I took of you. The first two are ones I took on the longest night of our lives.

As bad as you look and sound in these the funny thing is they were taken in the early morning hours after you were starting to show improvement. I wanted to show you a bit of how you were breathing and what you went through. Notice on the second one how deep your chest is retracting as you try and breath and remember this is when you were doing a ton better.

I should have done some in the early evening when you were really struggling but I was too scared to think of pictures or video then.

This one was taken yesterday while you were awake and playing with me. While we don't know how good your vision is I now have no doubt now that you can see. Your personality is starting to come out and it's so much fun to be with you.

I'm too tired to give a blow by blow of the last few days, though someday I think I should, so I will give you the short version.

The Dr's wouldn't start your feeds. I fought them and got them to start them.

The Dr's wouldn't increase your feeds. I fought them and got them increased.

The Dr's wouldn't increase your feeds more. Yes, I fought them and well you know the rest.

The Dr's stopped your feeds. Nobody knows exactly why. Maybe 'cause you were a little gassy, or because your tummy was a little distended, or because it was Saturday, or because they are crazy food Nazi's or something but...of course I fought them and of course I got them started again.

So now it's Monday early evening. The Dr's are only increasing your feedings by 3cc's every 12 hours for no apparent reason. At this rate it will take 2.5 days to get you back to full feeds. Way too long for you to be without proper nutrition.

So your dad and I are going to go have dinner before he heads back for the week.

and I will go and fight them.

Because I am a mad elephant and I must protect my baby.

The longest night of our lives

I've been sitting here thinking over my life for the last 41 years.

There have been many hard long nights, some from emotional pain, some from physical, but I can say without doubt that last night was the longest and hardest I have ever known.

When I leave here I will have been at the hospital for 22 hrs. I didn't eat breakfast, I only ate a bit of lunch, and forgot to eat my dinner.

I've been sitting in this chair for most of the 22 hrs except when I've been stand at your bedside.

I spent about 30 minuets standing while holding up your head till my arm fell asleep trying to get rid of some of the facial swelling you got from laying on your face for so many hours. Another 3o minuets holding your hand because it seemed to calm you, and endless amounts of time with my face pressed against yours ( so in case you can't hear me I know you will a least feel me) repeating over and over again "it's alright Mason, your alright Mason, Mamma's here, it's alright"

My back is killing me, my knees are pretty bad too. I haven't had anything to eat or to drink for about 12 hrs. Physically I'm pretty much miserable.

I've almost lost it about 3 or 4 times and around 3 in the morning I just let myself cry while the nurse's were distracted looking at something on the internet.

None of this even begins to compare with what you have gone through.

I don't think I can bare to see you stuck one more time. You cry now when someone just touches you.

Your face and boy are swollen.

Your physically and emotionally spent.

I've doubted myself, as a mother, as a nurse, as a person.

Am I doing the right thing? Am I making you suffer needlessly?

Am I fighting the trach so hard for you, or for me?

Is this even worth it?

I don't know when I will have the answers to these questions but it will be shift change in a little bit and I will have to leave while the nurses give report then your dad will come and stay with you while I get some sleep.

The longest night of our lives is finally coming to an end.

We made it baby. It's been absolutely horrible but we made it.

You stayed off the breathing machine and are doing better and better every hour. Your breathing so well your even starting to wake up at times and look around.

Of course everything could change anytime but your looking really good and I'm hopeful you will stay that way.

One more day down.

One more day closer to getting you healthy and home.

Someday this is going to be funny..

Not today mind you but someday.

Someday, years from now, we will all be sitting around the table after dinner has been eaten and telling stories the way my family does and we will laugh at what you put me through today.

Someday.

So your hanging on but just barely. We have put you back on the vent through a nasal cannula which is the last step before you get the tube back in your throat.

The Dr's feel that putting the tube back down your throat will aggravate the swelling and as long as you can hang on we will. We are going to push it as far as we can and hope you can make it till the swelling decreases.

They are giving you steroids and have you on your belly since your airway stays open best this way.

They have put on an external carbon dioxide (CO2) monitor. It's not as accurate as doing an blood test but it will give us an idea, without having to draw blood, if your carbon dioxide levels are climbing.

If your CO2 levels stay low enough we are going to continue to ride it out. I can't leave your side and plan on staying all night. I can't stay here all night and be by your side tomorrow too so I've called in re-enforcements aka Dad.

Your Dad drove like crazy to get here and is not going to go into work tomorrow since you are so sick.

So we are here.

Waiting

Watching

Hoping

Hang in there kiddo.

So team Mason we need you.

Pray, send out your good thoughts, and cross everything you've got because if this doesn't work. We really don't know what will.

To hope or not to hope...

That is the question.

Whether it is better to let our hopes get up and imagine ourselves heading soon for home and deal with how painful the crash will be if the surgery doesn't work.

Or is it better to figure we are staying here for the foreseeable future protecting our hearts and our hope and holding onto what little stamina we have left.

I think the second choice might be smarter but it's too already late or maybe it just impossible.

Our hopes are up. Your Dad and I are already making plans, and list, no matter how hard we try we just can't figure out a way not to get our hopes up. I guess there really isn't a way to protect your heart when you love.

So...

So we wait again, we hope again, and we love you.

Yesterday and today your doing well.

Your Dad and I just had to go home for the day to take care of business which of course landed one day after your surgery. We really didn't know what we were going to do we absolutely had to go home for the morning but just couldn't leave you alone the day after surgery.

Aunt JJ to the rescue! She came and stayed with you. She got here in the evening on Monday and stayed with you till around 3 am the got a few hours sleep and then stayed by your side till I got back the next afternoon. I just don't know what we would have done without her.

Within minuets of getting her she got your pain meds increased and you rested comfortably with her watching over you. Don't worry baby. Aunt JJ's got your back too.

Overall your doing really well. You are really swollen with all the fluids they gave you during surgery (your weight went from (3.5 kb to 3.75 kg) and with the increased levels of pain medication your getting they deiced to keep you on the breathing machine an extra day. You also needed another blood transfusion most likely from all the lab draws they are doing on you.

While you are on the breathing machine you are on room air and your labs look amazing so that's hopeful. Your feeding tube site is tender but looks great and is draining a tiny bit of fluids which is a good sign that your tummy is already starting to work again.

I was talking about how sad I was that I didn't get your footprints done or your first photos done like most babies do so Tania was nice enough to get your prints for me. I'm so happy I have them.


((Sigh)) look at your hair! I think you look like something out of the Mad Max movies.

My swollen half bald beautiful baby boy!

So today we are waiting for the Dr's to do their rounds to find out what the plans are for the day. We think they are going to start weaning you off the pain meds and get you off the breathing machine sometime today. We think they are also planning on starting your feeding again a little at a time.

Well what I do know is that we are one day closer to getting home no matter when that ends up being and that's a very hopeful, and happy thing.

Another Step Closer

Today we took care of two procedures at once. This allowed us to intubate you once. First the G-tube. Then the procedure to remove the flap of tissue that was obstructing your airway (Plasty for short).

The MI-KEY "Mickey" will allow us to feed you without having a tube in your nose or mouth. Not perfect but better. This tube ties into your stomach and helps keep your face free of tape, another plus. It is also much easier to clean and for Mom and Dad to use at home, benefits all around.

The plasty is something we have been asking for to help you breath easier. We hope that by removing the obstruction this will reduce your strider and you will be able to take a deep breath with ease. If your O2 and CO2levels are stable and you stop spending so much energy on breathing who knows you might actually start growing.

The day went well, we were supposed to have surgery at 3:45 PM but things changed and you went in at about 9 AM, much better. you returned at about noon and we were both here waiting for you.

You struggled a little with the breathing tube, it was too far in and actually went into the right ventricle. Well one x-ray and lots of tape later we thought we had it. One more x-ray and another adjustment and of coarse more tape and now you are good.

Mama is with you while I type. You are so strong. You do amaze me.

Mama is incredible too, being here by herself. She is getting some help but I do not know if the roles were reversed if I could do it by myself.

So you owe Mama. I would advise a flower and a card on every anniversary of the day you came home. Because with out our Lioness we would still be waiting to see what happens instead of another step closer.

-Dad

After the surgery's your color looks great!

it was not enough to give you a bad hair cut but another tube at least this one is breathing for you.

"M.I.C.K.E.Y. M.O......."