Not going to get extubated tonight...

So we waited all afternoon for the ENT to come and extubate Mason. Finally around 9 pm the ENT fellow called and said they didn't need to be there to extubate him.

They just said if he needed to be re-intubated to do it with a 2.5 ET tube and to have anesthesia do it and then they would do a bronchoscopy on Monday.

So the unit hears this and figures they don't want to deal with a kid going bad in the middle of the night so they would just wait till morning to extubate him.

Perfect ((insert sarcasm here))

So I insisted if they weren't going to extubate him they needed to sedate him. The resident tried to argue that morphine was enough but just then Mason started waking up, holding his breath, and turning blue.

So I got the sedation.

I stayed till Mason was good and snowed on drugs. George and I are back home. Going to go to sleep early and get back early in the morning before anything happens.

p.s. I was in the room for two hours. Nobody even tried to get me to leave. I'm thinking my nurse may have been warned. :)

and...

Our Internet isn't working so I won't be posting again till at least Monday.

I'm just leaving your room heading home to spend some time with Pierce. Granny will be here with you tomorrow.

No sleep study tonight which is good in a way. I don't want to be exhausted. Pierce deserves some quality time with me.

Your de-saturating to the 70's when you get in a deep sleep. I'm trying not to read to much into it.

Just going to keep going with the flow. See what tomorrow brings.

Stupid H word.

The H word...

Yep, that word again. It's back. It's trying to sneak it's way in and take over.

I blame the Dr's and the nurses for part of it. All talking about next week. The happy little smiles. The quickened rate at which things are being ordered and carried out. The are feeding it. Encouraging it. Trying to distract me and let it sneek in.

It's partly your fault too. Your back on 2 liters through the nasal cannula for over 24 hrs now and your doing well.

Hanging out in your new swing. Sometimes you like it.

Really well.

and so it's back.

Hope

Hope for home. Hope for our family to reunite and be whole. Hope that this part of our journey is coming to an end.

Your first big boy outfit that nurse Jaclyn bought you. Look at your dinasour feet!

Us with your night primary nurse Jaclyn. She's absoultly wonderful and nurturing to you. Mommy can always sleep really well when nurse Jaclyn is on.

The Dr's want to do another nap study which is where they will montior your oxygen levels over an hour while you sleep. I'm asking for a sleep study which will be done over a whole night as you sleep.

Your even doing better during your PT sessions.

We had a nap study done before and the results suggested your oxygen levels were fine at one liter of support. Well they were for a couple of days and then it wasn't enough and you crashed and almost got re-intubated.

I just don't feel that an hour study, which means only watching you for 20 minuets on 2 liters, 20 minuets at 1 liter, etc will give us a clear picture of your oxygen needs. The Dr's think I have a good point and so they are working to get the longer study done.

In fact it's around 1:30 on Friday and Smith, the resident, just came in to tell me that they are optimistic that they may have a slot for us tonight.

We are about to hit our 28 day check out from RMH on Monday again so I deiced to check out today in hopes we will be back in and settled again on Sunday. I was going to drive home tonight to sleep at home and then pick up Pierce tomorrow so I can take him to Sarah's birthday party. Now, if the study is tonight, I will stay here and leave in the morning I guess. Good thing I can sleep while they are doing your study.


On Wednesday Aunt JJ surprised me with a visit from Pierce, Cousins Lauren, and Jonathan. It was wonderful to get to see Pierce again and he and I had so much fun singing his favorite songs and just spending some Mommy and P time.

Best big brother in the world!

The best part of the visit is Lauren and Jonathan got to hold you for the first time and of course you absolutely loved it.

Aunt T came to visit us on Thursday. You loved it.

So depending on how soon we get the sleep study done and what the results are the Dr's are talking us getting out of here soon. Like next week soon.

Me. I'm just going with the flow. Happy with how good you are doing and the way things are. Tomorrow will take care of it's self. I honestly just don't have the reserves left to let myself get excited only to deal with the crash if it doesn't happen.

No reason to be using the H word.

Not yet

but......you really are doing so good. (and I'm getting my hopes up)

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.

Quick update

it's almost 11:20 I'm counting the minuets till I can call your nurse and get the latest CO2 level and go to sleep.

I would have gone to sleep a while ago but whom ever is above me in the RMH is re-arranging their furniture, or bowling with elephants, or something that is creating an unbelievable amount of noise. When we were in our old room upstairs we never heard our neighbours, now the little time we have to sleep is often interrupted by others staying near. It only adds to how hard this all is.

As bad as yesterday today was so good.

Your CO2 levels were in the 40's, which for you is an excellent level. Your work of breathing is half of what it was yesterday and your stridor is barely noticeable. You look so much more comfortable and I got to hold you for the first time since Sunday night.

We had a nice conversation, I even worked on signing a bit with you, and I managed to stop myself after only giving you 100 kisses.

We've made it through the hardest part and now we will have to give you a few days to recover before we will know how successful the surgery has been.

One of two things are going to happen.

Either you will continue to improve. We will wean you down to the high flow, then after a while to the nasal cannula, and then maybe even off with no oxygen support, then home.

Or you wont get better. We will be unable to wean you off the high flow and then your Dad and I will know we explored and exhausted all possible interventions.

If you are unable to wean we will get you a trach and then, most likely be home in short order.

Only time and your anatomy will tell.

The Dr's are all rosy and positive but your Dad and I are cautiously, but realistic, optimistic.

The surgeon still haven't started feeding you even though you have great bowl sounds and have had 3 bm's. The painfully slow pace the Dr's work at is maddening especially since, now that you are feeling better, your starving.

Just spoke to the night nurse your latest CO2 is 47. A good level for you.

I'm off to get some sleep. Have to be up early and by your beside before the surgeon round tomorrow.

Gotta get my baby some breakfast.

Night love. One more day down. One more day closer.

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......."

Through the double doors again..

Once again the hated double doors to surgery. Our fourth trip and hopefully our last trip for a long while.

Your surgery was scheduled for 3:45 pm today and they took you at 9:00 am. Even though we had to rush to get here it's great that your going so early so you wont have to go the whole day without eating.

The plan is to do the Supraglottoplasty where they will sedate you then remove some of the extra tissue around your vocal cords then to do the feeding tube surgery. We don't actually know which they will do first but since they usually do clean to dirty in surgery they will most likely do surgery on your throat first then your stomach. We figure it will take a few hours at least.

So again we need team Mason. Send your good thoughts, pray, for a quick and complication free surgery and that this is the solution to your breathing problem that will get us on the road to home.

your favorite nurse Tania

This is your primary nurse Tania. Nurses have to volunteer to be a primary and we were lucky enough to have Tania volunteer to be yours. By the time your old enough to read this you may not remember her so let me tell you that you love her. You always rest easy and have a good day when she's taking care of you.

cousin Whitney thinks you look like a badass with your new haircut

On a side note you got butchered a hair cut yesterday. They shaved the whole right side of your head. I'm less than thrilled about it but you needed an IV and it was the only place they could find one.
I was hoping to do your newborn pictures soon after we got home. I guess we will just have to make sure your "good" side is always toward the camera.

I am Momma...

hear me roar! :)

Long day today.

First meeting was with the surgery Dr's. They don't want your feeding tube on Monday. They want to wait till we have the results from the ear nose and throat (ENT) Dr's scope of your throat.

So here's how it's going to go.

Monday the ENT will make you sleepy and look with a camera at your upper airway in action to see if they can visualize your obstruction. After that they will sedate you completely and look deeper down into the opening of your lungs.

The ENT will be looking for two things. One to see if there are any signs of acid reflux that might be causing the inflammation that is blocking your air way. If the do see any signs of acid reflux than the surgeons will do the Nissen surgery along with your feeding tube surgery.

The other thing the ENT is looking for is to see if there is any changes with the Laryngomalacia (extra floppy skin around the vocal cords) and subglottic stenosis (narrowing of airway) that might warrant doing the Supraglottoplasty and dilation.

So depending on what they find you may have 1 to 4 different surgeries coming up. Holy moley!

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

So this afternoon two times you had a tiny bit of spit up. The amount was so small it can only be described as scant. So the nurse we to report it to the resident and came back saying the resident had given the order to stop your feeding for 24 hrs because he was concerned that you might aspirate (inhale into your lungs) the feeding.

I was shocked by the order. Having see the tiny amount of spit up you had, and being very experience with aspiration I felt the order was excessive and unwarranted. I explained to the nurse that I didn't agree with the order and I would like to see the resident before she implemented it.

So an hour and a half later the resident finally came to talk to me about it. He explained to me that he was concerned with you being on the high flow oxygen that you were a risk for aspiration and so he felt your feeding should be held. He felt with your history of acid reflux this increased you chances of aspiration.

I explained to him that you had been on the ventilator through the nasal cannula and had been actually vomiting your tube feeding they had not held your tube feeding then so I didn't understand why he felt it had to be held now. I didn't see any reason for you to go without food for 24 hrs or longer when you were only spitting up scant amounts.

Also that the Dr's have seen no evidence of acid reflux (that's why they don't think you need the Nissen surgery) so that again wasn't a valid reason to hold your feedings.

And since nothing is planned till Monday, and that's just a scope, not an intervention then what he was purposing was to hold your feeding for up to a week and a half.

You have finally started to gain weight (you weigh 6.5 lbs by the way) and without your tube feedings you would start to lose weight again. You would not have the energy to maintain your breathing and would end up back on the breathing machine guaranteed.

Not to mention that going without food would make you absolutely miserable and I wasn't going to let that happen to you without a good reason.

After going back and forth about the order the resident decided to bring in the neonatologist to discuss it with me. The Dr and I discussed the order and my reasons for refusing it and....

the Dr. agreed with me.

So enjoy your dinner baby. Mamma's got your back.

Of course if I see any signs that you are at a risk of aspirating then we will be holding your tube feeding immediately.

I have a feeling you will do just fine.

A few times today you were wide awake for quite a while. We played, sang songs, and snuggled. I love you so much my beautiful baby boy.

Wonderful, amazing, happy

Sorry it has taken me so long to update the blog. It has been another edge of your seat kind of day and I needed some time to unwind. I bet you can guess from the title that Mason is doing great. :)

My sister/friend Tiff came up for another visit and she took me out so I could decompress after the long day. I swear she's better than a therapist.

So this afternoon I had many Dr's all come to me to tell me that you were going to be intubated today. It was inevitable. Your weren't blowing off your carbon dioxide (which is a poison) enough and your levels were getting to dangerously high levels.

I agreed with the Dr's that if you were in failure then intubation was the next step but that you had done well in the CTICU on the vent through the nasal cannula and I thought we should give that a try.

The Dr's didn't feel that would improve the situation but agreed to at least give the high flow a try. So we deiced to put you on high flow at 4 liters nasal cannula and do an ABG (oxygen level by blood test) in an hour.


Before the high flow your CO2 level was 62 and after an hour on the flowby your CO2 level was 48!!


All the Dr's were amazed that you were able to lower you CO2 level by 14 points in only an hour.

I just knew, even though they kept telling me otherwise, that you just needed that "push" of air to help keep your airway open.

An of course I knew how many of wonderful people were out there on team Mason were sending prayers and good thoughts for you and with that kind of support you just had to pull through.


I like being right.


So now if your respiratory status stays stable we will wait till Monday for the Dr. to take another look at your trachea and for your feeding tube surgery.


Keeping our fingers crossed for a few uneventful days.

As stressful as the afternoon was the morning was so much fun. I had the pleasure of meeting Ruben and his dad Jason who were at CHLA for a CT scan. Ruben is also an amazing CHARGE'er like Mason. His Mom Cathrine has a great blog here. Her photography is just beautiful.

Ruben is such an inspiration. So intelligent and sweet it's impossible not to fall in love with him instantly.

Ruben's dad was so nice to answer my 100's of questions. I'm hoping we get to see Ruben and his family again soon and I just can't wait to meet his little brother Callum. I heard tons about him.

How adorable is he?

Mason and Ruben meeting for the first time

So thank you all again for all the good thoughts and prayers. Your love and support mean the world to us.

Mason isn't doing so well

the pulmonologist is concerned he is going into respiratory failure again. We are only two steps away from getting re-intubated.

I'm pushing the ENT Dr to get in to see you sooner than Monday now that you are in failure again. We will see what happens.

So once again I'm asking. Send out thoughts and prayers that Mason is able to breath well enough to stay off the breathing machine please. Your support, good thoughts, and prayers have carried us through some dark days.

We were hoping we wouldn't need it again but we are so blessed to have you all on Mason's team.

I had a wonderful time this morning getting to meet Ruben and his Dad Jason. Will blog, and post pictures, about it later tonight.