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.
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."
"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.
5 comments:
I keep praying everyday that when I get on here and read you will be giving us the BEST news ever that you are taking Mason home.... I LOVE that your standing up for him because obviously the residents could use all the help they can get making good decisions for Mason!! Keep Roaring MaMa!! Wishing you much luck for today's meeting!
Melissa (mommy to Maccoy TOF)
Love sweet Ella's drawing! Mason is lucky to have such an informed, determined, loving Mommy and Daddy. I will be praying that you are able to see some progress soon - whether it be a discharge or a plan to get your sweet boy home. Hang in there... and keep sipping that Diet Coke when you need a little energy boost. ;)
Hugs all around!
I am so glad you are not letting them get away with things. You know what to say and have the balls to just say it! Mason is lucky to have you as his mama. Praying for peace of mind as you guys deal with these doctors and hoping good decisions will be made in his favor. Love the little drawing too! So adorable.
Way to go Mama!! Stick to your guns and dont let those doctors talk down to you. Us moms know best. Sorry it took so long to get him in tho that upsets me.
Crystal and Eva
Shawshank.. one of my fav movie of all time. Sorry not been over to support. Prep for Reu's stoma close surgery at UCLA on Tuesday. Can we speak... 310 430 3701. What surgery on Monday?
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