Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, October 06, 2015

Last supper, plus dessert!

I thought it odd that I didn't get the usual "night before admission" phone call from the children's hospital where Angela would be having her surgery. I was on the phone at 6:00 am to verify what time we were supposed to check in. I'm so glad I did that!

As it turned out, there had been no phone call because Angela wasn't on the surgery schedule. At all Monday or in the near future. To say I was a bit irritated would be a huge understatement.

It was explained to me that after our consultation the surgeon called the adult GI we saw a couple weeks ago to verify which type of surgical approach was written in the orders. The surgeon - who has done all of Angela's surgeries in the past - explained to the adult GI that given Angela's history and the amount of scar tissue she has in her abdomen and stomach, he didn't feel comfortable doing an open procedure. Instead he requested the pediatric GI specialist be in the OR as well and together they do an endoscopic procedure. The scheduling people for the two doctors would need to get that set up, but I was to receive a phone call letting me know that surgery had to be moved to another date. I didn't get that phone call.

I didn't blow a gasket on the phone. I remained calm as Angela sat on the nebulizer in the background treating her current case of aspiration pneumonia. Yes, I remained calm. Ultra calm, ultra cool, and 100% clear that I expected this to be scheduled immediately.

Angela was so excited to be going to the hospital today. It is as exciting to her as a Taylor Swift concert, or a trip to Disney. She wasn't able to eat because of her not-scheduled surgery, and we were hopeful we could get her a last-minute slot. That wasn't to be, so when I finally made her some lunch she was a bit annoyed with me. "I can't eat. I can't eat that. I'm having surgery and I can't eat." Thankfully her hunger won out and eat she did.

This afternoon she wanted me to show her pictures of kids with gtubes and PEGs again (a PEG is a type of tube, usually temporary until the stoma is healed and a button can be put in a few weeks later)

Angela's surgery has been rescheduled for this morning, October 6th. Check in is at 8:00. She went to bed reminding me of the schedule, "You will wake me up, right mom? You will tell me its time to get dressed, but I can't eat. Nope. No breakfast for me. Then we will go to the hospital and I will get my I.V."  I swear, Angela is the only kid I know who likes IVs.

I'll try to post an update in the afternoon after surgery.

2 comments:

Karien Prinlsoo said...

Praying for perfect healing. May she have no complications at all. I pray that God will select special nurses to nurse her and that they will be alert to all her vitals and take very good care of her. May God hold your mothers heart in His Hand and dry every tear. You are in my thoughts and prayers.
I ' m going to send you a song that Kallen's school signed last year (on fb Messenger) They were only a few students. Its from a mom, so the focus is on Jason, one of Kallen's friends.

Sue G said...

I've been reading your blog for a while. Sorry Angela has to go thru this. But I'm happy she enjoys it! There are two of them out there. I have an adopted son who LOVES to get iv's and go in the hospital. After his last surgery we came into the recovery room and he said, "This is the best day of my life!" iv's , remote controlled bed, a tray of food that has wheels. Life was great. Ha! Praying her surgery goes well. I have a friend whose son just had a tumor removed from his brain. It caused some nerve damage to his throat and he can't guard his airway so he cannot eat. He spent his first week begging for food! She got a tip from a friend and bought flavored Chapstick. He LOVES it! That's all he needed. He has a g tube and his Chapstick. Not sure if it will help Angela, but I just thought I would pass it on.