The drainage tubes

Here are some photos of Jax's drainage tubes. Less and less is draining from them hourly/daily. The site looks excellent!  His apt to have them removed is next Thursday. The obstruction is definitely gone! Seriously, its like a dam has breached!  He is peeing a flood! Poor Littleton guy slept 10 hours straight last night and woke up in a puddle of urine. His whole diaper, sleeper and mattress were all drenched. Couldn't help but to feel bad for him!
He's still refusing solids. I'm guessing his throat is still a little sore from being intubated. I'll try offering a solid again tomorrow at breakfast time. One thing Brett and I both noticed is he's not nearly as grumpy as he was before the surgery.  Does that mean he's been in pain this whole time? We sure hope not, but we're both thinking maybe.
Thanks for all the comments, texts, email, facebook notices, prayers and well wishes. We have a wonderful network of family and friends.

Jennifer

Got sprung!

My happy, tired boy.

Jennifer

Discharging soon!

The IV is out. All monitors are off. We should be out of here by lunch.
Drainage is minimum. I'm actually surprised by how little there is coming out of his tube. We've only had to replace the dressing 3 times!

Jennifer

Mommy and Daddy with Jaxosaurus Rex

We're going home today!!! This news made us all very happy.

Jennifer

Good morning!

Jax is still an eating machine! He had 6 more ounces at midnight and 4 am! At 6:30 when he woke up he wanted more! I gave him 4 ounces and a jar of #2 bananas and he was still hungry!
I can tell his coddle epidural wore off.  He's kicking so much that he has kicked off his blood pressure cuff, pulse ox and worked his dressing off of his incision.  Yes, he's that active coming out of kidney surgery!  Don't you just love a baby's resilience?

Jennifer

Eating!!!

He just ate another 6 ounces. He had 4 ounces of glucose water at 4 and 2 ounces of formula around 5! Little guy is eating like a champ! 
Of course he can't sleep bc our roommate's guests are LOUD!!!! And the nursing staff has no problem banging equipment into walls and/or doors.
Its going to be a long night!

Jennifer

My baby boy

Jax's vitals are good. His temp was low, but we got it up with the help of his fluffy polka dot blanket. He has a pulse ox, IV fluids, Toridol ordered for every 6 hours and Tylenol as needed.
He's in a room with 2 other children,  he's the youngest.  He tried to suck on his IV and chew on his pulse ox. Now he has a "no, no!" cover on his IV and we moved the pulse ox to his toe.
Right now he's asleep in Daddy's arms.

Jennifer

Looking good!

Jennifer

He's out!

Jax is out of surgery and in recovery.  We should be able to see him in a half hour. Everything went well, small incision on his back. He has a drainage tube that will be in for a week and a stint that will be in for 6 weeks. Kidney looks good, operation should be a success.

JL

Jax is in surgery

Jax's is really hungry! He had a bottle at 6:45 and has been crying since about 10:30. Brutal.
He's in surgery now. The procedure takes anywhere from 2.5 hours to 4 hours. We'll update again when he comes out.
JL

Cutie baby boy

Jax's surgery is tomorrow

So, yeah I'm nervous.  Look at my cute sweet boy. Its hard to believe that tomorrow he'll be undergoing major surgery.  I'm Glad that it will be over with, but I'm still super nervous. 
I started writing this post around 11 am Tuesday. Now it's after midnight on Wednesday and I'm still searching for the words.
I moved on from super nervous to scared. I'm sure my fear stems from my lingering PTSD that started when Maryam was born. I'm just all too familiar with all the bad things that could happen. Not that they will happen,  but knowing that they could sucks.
Today was a perfect day. My little grumppopotamus was an angel. Its like all of a sudden I was able to figure him out! He even enjoyed his bath today. ENJOYED IT. He tolerated his last bath, but every bath before that was torture!  Today he splashed, smiled and laughed the whole time. It was awesome!  I even shot some video.
I'll try to update the blog throughout the day. Wish us luck, say a prayer or do whatever you do to bring good things to someone in the universe. Thanks!

Jennifer

Pictures from the hospital

Before Maryam started feeling better she wouldn't sit up, she wouldn't talk and all she would do was whine and cry.

Once the antibiotics kicked in she started sitting up, talking, singing and EATING!

Here is a picture of her with the fries she ordered from her nurse. She was an amazing nurse. We liked her a lot.

Here is a picture of Maryam's Lojack. If she went anywhere near the ward doors the alarm would sound and the doors would lock. Not that I ever left her side, but it was nice knowing that if I did, she'd be OK.

Free at last!

On our way home. M's 1st request was Roco Donald Happy Meal w/chicken nuggets.
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Going home!!!!!!!!

Woohoo! Maryam is getting discharged! What a roller coaster of emotions in the past 48 hours. I'm not going to go into it now, but wow!
Thank you to everyone who prayed for her or sent happy thoughts or lent her their good juju/mojo or whatever!
Love to you all!!!!!!!
Ps M read the word "Off" on her IV pump and wanted to push it. And that's why you shouldn't teach your 3 year old how to read. Ha!
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Napping

A girl, a mouse and her "pirate hand".
I like M's nurse today MUCH better than her nurse yesterday. I wanted to pound on her a little bit, or a lot. Her nurse came in a bit ago and took M's vitals. Her temp was only 98 and they dropped her IV fluids by 50%. She's getting a bit grumpy. I think its bc she's tired and hungry. She wants to eat but she's too tired and she wants to sleep but she's too hungry. No bueno.
She ordered fries from the nurse, apparently M thinks nurses bring any food! And now they're here! Wow! Like I said, her nurse today is much better than the one yesterday. Ha!
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Thinking happy thoughts

Th conversation w/the doc

Doc-I hear you like Dland
M-I want to go home
Doc-Home to Dland?
M-OK!
Then she proceeded to list off the rides she wanted to go on today.

Now she's sitting in bed singing ABCs, Itsy Bitsy, Small Wold, Twinkle and Jingle Bells. She's feeling tons better.
The doc said if she can stay fever free, she can go home this afternoon!!
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Little Miss Sunshine

For the record, if you ever want to make M cry inconsulably for 30+ minutes, wake her up at 5:30 for a 11 tube blood draw and then make her get up to go poptty! Yowza!
In good news, she hasn't had a fever sinbe about 4pm yesterday. In better news, she's talking again! In wonderful news, she started eating again! Yayayayayayayayay!
They're doing an immune system work up to see why she keeps getting sick. Checking white blood cell count blah blah blah. RSV negative! Woohoo!She pretty much completely stopped coughing. The 4th antibiotic worked. I think that proves she has/had an aspiration pneumo.
She's sating at 92% on room air. No more complaints of chest pains. She even asked for her glasses this am. I think we got her to the hospital in enough time to help her. Sunday night I was scared out of my mind that we were going to lose her.
They lent me a pump and are letting me keep the pump in my room. So I've been pumping every 3 hours. M has asked 3 times now why Jax is not here w/us. I'm so glad she's making her way back.
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Happy

Maryam asked for some chocolate pudding. Her nurse was very happy to oblige. She ate the whole cup down with no problem! After that she ate some Cheez-its and even took a few bites of chicken strips from her hospital dinner.
She's been all smiles! She even asked where Baby Brother is, nutty! She never asks about him. She's been begging to go to Dland. So I guess when she's all better we're taking a trip!
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Room air

M's been on room air since a little after noon today. At 1st she was sating at around 95. An hour later she was down to 92-94. Around 4 she was down to 91 -92. The goal is to keep her above 92% on room air. She's still dependent on Tylenol to keep her temperature down. If she doesn't get it by the 4 hour mark her fever spikes again. Right now its 102 again.
She asked for food a bit ago, when I gave her some she gagged and wretched. So, I guess she's still not ready. She's doing well drinking water.
M has been doing a lot of talking in the past half hour. She's asking for books, stickers and paper to draw. The IV fluids have really given her some color back and have filled her face out some.
She ended up taking a 4 hour nap. After only 3 hours of sleep last night she definitely needed it!
Yaya and Papa are here visiting her. They're all bundled up in their protective gear. M is smiling. I'm happy to see her looking more like herself again. (Insert sigh of relief here)
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