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. :)

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'm goning to scream!

Seriously I think I just might.

Or I'm going to cry. Or vomit. Something.

But before I get to that I need to catch up.

Friday we spent a long happy uneventful day together.

You spent some time in your bouncy seat. It's the same one Pierce used when he was little. I sure wish I had access to Pierce's babies pictures so I could compare you two in the bouncy seat. I can't believe how little you look. The vibrating box didn't work so we are going to get you a new one.

You sort of liked it. Sort of.

Come hang out in my crib! (see Mom's illegal Diet Coke in my bag again? Naughty!)

Then we tried sitting up with the help of my Boppy. You loved it! (yeah right)

Saturday your Granny came as she always does to babysit you. I think you look more like her everyday.

Hi my Granny!

Here you are talking to your Granny. I think your saying something like..."and then Mommy said to the Resident and then he said... and then Mommy said I don't agree... and then he said.."

Then you got to meet cousin Maureen (don't tell anyone but she cried when she first met you 'cause she thinks your so beautiful)

See your little feet in cousin Mo's hand? Adorable!

Then you got to meet your cousin Caitlin. You were your sweet and lovable self when she was holding you....


Ah well mostly anyway. (this is what we call your mad purple Popeye face)



Last (but certainly not least) you got to meet your cousin Kelly. You two almost have the same hair do! Kismet



After Daddy got off work Saturday he picked up Pierce and brought him to stay with us for the night. Daddy went and stayed with you while Pierce and I played with the trains at the RM house.





Yes, your brother is in his Halloween pajamas in February sitting on top of the table playing with the trains at 9:30 at night. Is this a problem? Nope around here we have learned to let some things go.



Then when Daddy came back from the hospital you two watched movies.





On Sunday your Tio Alex, Tia Lluvia, and your Abuelita came to see you (your Dad forgot to bring the camera..bad Dad!)


Abuelita got to hold you for the first time. She held you for hours while the rest of us took Pierce to ride the train at Griffith park.

Later we all went to dinner and then Pierce went to stay with Abuelita for a few days.



So now onto the scream/cry/vomit parts....


So after dinner on Sunday Dad went back to sit with you and I went rest back at RMH where I got a call from resident at the hospital (almost lost it when I saw the hospitals phone number till the resident told me you were fine). He told me that a mistake had been made. For most of the day you had gotten only the breast milk fortifier and not breast milk or formula.


So basically you hadn't been fed for the whole day. He told me they ran test to check all your electrolytes and everything was fine but they just wanted to let me know. Then he told me that since you were having the scope the next day at 1 he was going to make you NPO (nothing by mouth) at midnight.


So that would mean you had gone without food for 12 hrs, would be able to eat for 4 hrs, and then go without food for another 14 hrs.


After thinking about it I called the resident back and told him I felt holding your food at midnight was unnecessary. That from my experience (and also from what the anesthesiologist had said) eight hours was more than enough so I didn't feel they should hold the feeding before 6 (actually it should have been 5 but I don't do math well when tired).

The resident and I went back and forth about it for a while and then he said he would talk it over with the Dr and would let your Dad know what they had decided.


So guess what they decided....roaaarrrrrrr! LOL


So they held your feeding at 6 am and the plan was to do your scope with the ENT at 1:15.


Well 1:15 came...and went


then 2:15


3:15, and 4:15 came and went


Finally at 5:30 4 hours and 15 minuets after you were supposed to go to surgery they finally took you. So you went without feedings for 11 1/2 hrs before they even took you. Imagine if they had held your feeding at midnight.

getting you ready to go

I'm starting to hate these double doors

So Dad and I stayed in the waiting room and in about 45 minuets they brought you back. We think we saw the Dr pass us bringing you to the room and then pass us again as he left but, if it was him, he never stopped and talked to us.

When we finally got to go back into the room to see you, you were cold and pale and not breathing too well. The got you warm and breathing better but they were still concerned about you.

Since it was shift change they made us leave. We had asked to talk to the ENT to find out what the scope showed but found out that he had already left for the day and would come and talk to us at 10:30 tomorrow. But the resident was willing to basically tell us what the ENT had found.

He said they found some floppy tissue around the vocal cords (we already knew that), and some mild stenosis (we already knew that) and the plan was to do......get this.....NOTHING.

Yep. We waited a week to find out they plan on doing nothing. Just let you grow out of it.

So apparently the fact that you can't breath isn't important and they are just planning on having you stay at the hospital till you out grow the breathing problems.

That should only take a year or two. Maybe a little more.

Good plan Doc!

So we have asked the neonatologist to be at the 10:30 meeting with the ENT where we plan on no longer being patient and understanding about the hospital's and Dr's lack of urgency on getting you home.

We are going to demand a plan to get you home or demand a plan to get you discharged so we can get you to Loma Linda.

So now it's 11 pm. They have finally gotten your breathing under control and are putting in your tube so they can restart your feeding. (17 hrs without food for those who are keeping count - 22 hrs if the resident had his way).

Dad's best friend Sean's oldest girl is Ella. She had an assignment to write what she would do if she had $100,000 dollars that she couldn't spend on herself.

She wrote - "I will give my money to my cousin who has heart problems. He is two months old"

I don't know what I love more, that she wants to give you the money, that she thinks of you as her cousin, or the drawing of you all bundled up with IV lines.

Allison and Sean you have raised a beautiful loving little girl and Mason is so lucky to have a cousin like E, J, and A. Love you all.

I was watching the movie Shawshank Redemption while writing this blog post and these lines really seemed relevant to our current situation.

"Bad luck, I guess. It floats around. It's got to land on somebody. It was my turn, that's all. I was in the path of the tornado. I just didn't expect the storm would last as long as it has."

I guess it's just our turn baby but the storm has got to pass soon.

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.

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.

Hurry up and wait

So it's been a while since I've posted. It's been a combination of being homeless for a few days and just not feeling like it. But I'm back now and going to try and catch up for the last few days.

Thursday you had your first physical therapy session. You didn't full on hate it but you didn't exactly love it either. You physical therapist is super nice and really patient and gentle with you so that helped. While your in the hospital you will be getting PT sessions on Mondays and Thursdays.

Baby jazzercise!

Thursday afternoon uncle Sean came and met you. Uncle Sean is good for your Dad and I'm so grateful your Dad got some guy time.




So Friday we spent the day with you then left around 11 pm to drive back home. It was nice to see the place (and to sleep in my our own bed so soft!) but the house felt like a corpse to me. You know like when someone dies and they say whats left is just the body. The the soul and the spirit had gone and now it's just the corpse. Without our family there that's exactly what it felt like.

Then on Saturday while Granny spent the day looking after you we spent the day with your brother. It was so great to see him. He kept giving me hugs and calling out Mommy. We didn't do anything fancy but we got to spent some real time together and it was wonderful.

Leaving was hard of course. I don't really want to think about it.

We got back to the hospital in the evening after figuring out where we were going to stay and you did not look good. In fact you looked awful. At one point they were even thinking they might have to re-intubate you but instead they gave you some steroids and increased you oxygen and you made it through the night.

Dad and I never left your side. We got a parent's room at the hospital and Dad and I just traded off shifts. It was a long scary night and we both felt so helpless.

Sunday not a lot happened. You spent the day getting better while Dad watched the Superbowl.


Monday Dad and I got back into the the LA Ronald McDonald house. We are in room #44 this time and it's twice as large as the room we had the first time.

You'd think we were moving in for a month or something!

After we got settled in we spent as much time with you as possible before he had to leave to go back to work.

I managed not to cry when he left. Well mostly anyway. I can promise you it's way harder on your Dad to leave than it is for me to stay.

Tuesday you looked amazing! At one point you were awake for almost an hour. We talked, we played, you cooed. We had a wonderful time.

Sleeping on Mommy's lap

Hey Mickey what's up?

I wanna put on... my my my my boogie shoes and boggie with you.

I had a meeting with the ear nose and throat Dr about your increasing stridor and respiratory distress. It was a long discussion that kinda went back and forth but in the end what we deiced is too go in and take another look and see if your laryngomalacia and mild subglottic stenosis have gotten worse.


Depending on what we find it will give us more information on what the next step is. The Dr said that in only 5% of cases is surgery warranted and he is thinking you may fall into that 5%.


The surgery sounds pretty invasive and only has a 50% chance of improving your breathing issues so I'm hoping it doesn't become necessary. For now you are back at 2 liters of O2 at 40% and are comfortable and happy.


I have asked the Dr's to coordinate the L&D and your tube feeding surgery so we only put you under anesthesia once and that's what they are working on now.


So again hurry up and wait. We're getting pretty good at that.