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!"

Wednesday, April 13, 2016


I can't believe it's been five days since Angela's surgery. It has both dragged on and sped past, all at the same time. Hospital time is like island time; everything happens at a different speed than the rest of the world. Sometimes it's too fast for me, and other times not fast enough.

I posted about the change in procedure for fixing Angela's liver. It has been nothing short of amazing! Without the need for any scavenger medications, Angela' ammonia levels have been in the 20s. Can you even believe it? The surgeon had warned me the incision would be large. Still, it was a shock to actually see it in real life. Then there is also a 6 inch incision on her thigh where the graft was harvested from. (pic posted with Angela's permission)

Now, I need to be clear. We have been allowing Angela to eat a few things by mouth for "social eating" as her doctors referred to it. Telling a teenager who loves food that suddenly she cannot eat a single thing does some pretty serious things to that kids' mental health, so we allowed a few things, all zero or very low protein items, and only very small amounts. Plus, when she is well, she is able to keep her lungs clear a bit better, particularly when her protein level is down. We even let her drink a little bit. BUT...that is on a good day! Not when she is high on narcotics that affect muscle tone and her protective reflexes, so in  her current state ZERO eating is allowed. Everyone here knows it. There is a band on her wrist, a sign on her door, and its written on the white board next to her room. Immediately after her surgery she was allowed to suck on toothettes to keep her mouth moist, and an occasional ice chip. As in, a single chip of ice which is nothing.

On Sunday we were moved out of PICU and into a regular room. A couple hours later I left the room to get some dinner. While I was gone one of the nurses gave her tylenol and her reflux meds by mouth. Angela was quit excited to show me her red tongue! I quickly brought to the nurses attention the fact Angela aspirates everything and there are NPO signs all over the place.

Later that evening I left the room to make a phone call. When I  returned Angela had an entire 16oz cup of ice chips in front of her that she was just finishing. (So yeah, great. Let her mouth and throat get nice and numb and expect her to swallow safely, while on heavy drugs!) I said something to the nurse who pretty much blew me off like it wasn't a big deal. I was NOT happy and said something to the charge nurse about it.

We had been waiting for Angela's GI system to wake up and start making noises so she could start getting food through her gtube. Finally it was making quiet noises so we were anxious for the surgical team to do rounds! Monday morning she was doing really well and there was talk of her being discharged by Weds! I had to leave for two hours to switch vehicles with Dean. Two hours. When I came back Angela was just finishing a yogurt cup. She was very exited to tell me, "I had yogurt, and pudding, and jello, and grape juice!" and stuck out her tongue to show me it was indeed stained purple. I immediately called the nurse it. "Why is she eating, and who gave her the food?" The nurse responded, "Oh, the surgical team lifted the NPO orders and said she could go to full liquids (pudding and yogurt count as full liquids) The nurses did not realize Angela's NPO orders had nothing to do with surgery. A few hours later her very wet cough started, so we were all pretty sure she had aspirated. I was very quick to get the patient rep, surgeon, charge nurse and nurse manager involved. Everyone is now on the same page, but I have not let this drop. This was a major negligent act on their part.

That was just the beginning of a very difficult night. Swallowing problems aside, when the doctors lifted the orders for Angela to get food, they did not mean an entire meal worth. "Take it slow" is the rule after major work like Angela had done. Angela's GI system rebelled, shutting down once again. Her abdominal cavity started filling with fluid, and by 2:00 a.m. she was writhing in pain and had bruising showing up all over her belly. The surgical resident was called who was very concerned with what was happening and suspected the graft was no longer working. He ordered an ultrasound for first thing in the morning. In the meantime we couldn't get Angela's pain under control and she was miserable the rest of the night.

Finally and ultrasound was done around 9:30 in the morning. The graft was still working but there was a LOT of free fluid in her abdomen. Also her liver didn't look right but they think its because the liver is adjusting to new blood flow so there are physiological changes happening to it. We came up with a plan to help with the excess fluid. Her poor belly looks like she's 10 months pregnant. Since surgery 5 days ago she has gained TWELVE POUNDS, which of course is all fluid!!! Thankfully the incision is holding tight, but because she is on blood thinners she now has bruising all over the place, with a couple softball size bruises on her belly.

Today (Weds) her belly is still huge, but her pain seems slightly better. Her hemoglobin is very low so they're watching close in case she needs a blood transfusion. But, when her pain meds are doing their job she is game to sit with volunteers in the playroom and do some crafts, or take a walk around the unit. She tires very quickly though. She's not yet ready to try food in her belly yet so we're still discharge is still several days away. When she does come home she'll be on daily injections of Lovenox to prevent clotting since she is at really high risk.

I think that brings us about the current. I'm hoping the next couple of days things smooth out a bit. I have Monday in mind for a discharge goal. I guess we'll see!


Lisa said...

Get a lawyer. Medical neglect. Get them all.

eliz said...

Oh Leah, reading this as a Mom makes me cry.With our SN kids this happens too much. (lack of following ORDERS) We've even had this with nurses up here with our Foster Adults. Now our 8 yr old daughter Mercy with lots of medical issues and Sotos is having surgery (tethered cord) at the U next. I'll be 70 miles away holding down the fort, Tom will be there..........
All I can think about is how are they going to mess up?? SO FRUSTRATING!!
(((HUGS))) I see on twitter the transfusion, we are praying.

Sarah said...

Praying for Angela and her medical team.

Mortal Clown said...

Sending you all the prayers: I cannot comprehend the additional difficulties you're experiencing yet will try to imagine peaceful and constructive vibes/advice may help the most. And hoping YOU have a chance to rest and eat properly, Mama. Hugs from this stranger from afar.