Fontan 8

An update... It's been hard to find a minute. To catch up from the last post... She had a good night that night after she got her PICC line in and was able to drink. She rested and drank all night...20 ounces of gatorade in one shift! She didn't wake up for the day yesterday until noon. She was sweet and quiet for awhile. She had a few bites of a pancake and some fruit loops...still didn't have a big appetite, but it was nice to see her eat anything at all for the first time. We got the update that we were going to be able to pull her left chest tube! I was SO excited for her.

Before getting her tube pulled.

Adult patients say that is the most painful part of all. She had only been taken off sedation for a few hours and finally perked up a little bit, so I was a little disappointed they had to give her something again to pull the tube that would take her away again. They suggested a med that would give her an amnesia like response and I felt wrong about it but after some debate I went against my feeling and said ok. I honestly think the hardest moments for me are when she is given a drug that affects her brain, those neuro drugs that make her eyes roll back and she dissapears somewhere for awhile. Her eyes were also shaking back and forth, it looked just like she was seizing. Dr.s said it was a normal response to the drug. Well I hate that drug then and NEVER again will she have it. They were able to pull her tube with minimal reaction from her, but that's even creepier to me. I know it's good to not give her anxiety, and I am grateful it wasn't painful for her, but to me it's worse to see her that way.

Anyway, once that was pulled out (all 18 inches of it wrapped up somewhere inside her chest) and she came back to, she immediatley perked up. She felt better from having it out, I could just see the relief in her face. PURE happiness for my heart! She gave us smiles, and oh they were amazing!!

One out, one to go!! Horray!

First smile after the tube came out. Best picture ever.

That was huge to get that out so soon. It means we are in the 25% that don't have bad drainage issues post Fontan. Another miracle and blessing. Her right side drained just a little too much in the last 24 hours to remove it. Maybe tomorrow. It is draining very little today.

She took another rest and then we were able to get her into that wagon and out of her bed.. It was GOING to happen! She needed to get out of bed. She was so sweet. She was so happy to be out of the room. We did one full lap around the unit, which took a while because she had a lot of gear to be careful with and drag along, and when we got back to her room she looked at me and whispered, 'more'. So sweet. I said, we're not done yet, she wants more! So we went for another lap and then she said all done.

First time out of bed.

She was tired. We got her in a clean bed, I read her some stories and laid next to her for a long time. Sweet moments with her. She even had some visitors and was happy and smiling. She fell asleep from 11-2, then was awake from 2-5:30 wanted to watch movies. Then slept some more this morning.

Her milrinone (IV heart med) was turned off this morning. That was the last IV med she was on.

Yesterday I noticed she didn't want to use her arms, especially her left arm. She is using her right arm a little but it is very uncoordinated and seems hard for her to move. She is not using her left arm at all. I notified the dr. last night. This morning during rounds we discussed that it was still not any better. So they ordered a stat CT scan. They were concerned about a possible stroke. It's been a scary morning. We went down immediatley to do it, I was so nervous. This is what we know so far...The neurologist told us that he did not see any sign of a stroke. But she has a little blood on the brain that didn't seem to be causing pressure or swelling, but could possibly be causing seizures. The blood is on the right side of the brain over the area that affects movement of the left arm. I'm grateful to rule out a stroke. If she is indeed having seizures and it is causing this, they will put her on a seizure medication until the blood goes away, but we still have no real answers. Right now she is getting hooked up to do a 24 hour EEG to measure her brain activity and watch for seizures. They want to see her brain activity during all stages of awake, light sleep, and deep sleep.

Heading down to do the CT scan this morning.

She is responsive and is able to shake her head yes or no to questions we ask her and laughs and smiles so that is great. She isnt talking a whole lot. This is one of those times that we're taking it a moment at a time. I feel like everything will be alright, I really do. I'm hoping it's just nerve damage or something and she just may need some therapy for awhile to get back to normal. I hope so. I am scared though. I am used to all sorts of heart issues, but not brain issues and it is frightening. She seems frightened too and that is the hardest part. She has scared eyes. There is so much being done to her. There is nothing I can say to her that she will understand. It is so hard. I'm so glad she had a few happy hours last night.

Getting her EEG.

Hopefully we will have more answers in the next 24 hours.

Today's update.. phew. All I can do is pray, pray, pray. Please continue to pray for her. Thank you all SO much for your love and support.