Let it go!!

Hello friends! Last night right before bed (about 10:30 pm) Ava started having gagging trouble again and had to spit many times. We asked for Zophran (nausea medicine) and she fell asleep shortly after.

She woke once to go to the bathroom (pee and a tiny bit of stool) and felt like she was going to pass out. She started feeling dizzy and then her hearing went out so she quickly got back into bed. 

The surgeon and doctors rounded this morning. Her NG output is still higher than they like (around 1000 ml's a day) but the color is improving so that is a good sign. We will just keep doing what we are doing. No new changes today. Brian left early this morning to go back to work at Mazzio's. We would love to have him here with us but we need the money AND she is stable so it's okay. He will come back when he gets off. Our grass needs mowed so he needs to do that today too.

We have Maja back!! We are assured a fun day with her taking care of Aya-baya. She was running a tiny bit of a temperature but I think it's this room. Have I talked about her room? Sorry if I already did. My mind is a bit foggy sometimes. All the days run together. I start writing my blog post at about 10:00 in the morning and just keep adding to it as things happen throughout the day... I started doing this because it was taking me almost 3 hours at night to finish an update. 

So her room... We joke about it being "haunted". (I shouldn't even say this out loud for fear something bad might happen. However I've blessed the room... aka talked to God and told Him that we know HE is here with us and no thing formed against us will prosper as the Bible says in Isaiah 54:17 and we are safe.) This is the exact room we stayed after her surgery. They transferred us up here on July 7th after her night stay in the PICU on the 6th. The first thing we noticed was the temperature in the room. It goes from 68 all the way to 74 and we don't touch the thermostat. when we first came we would adjust it and it seemed to make it worse. It is set at 71 but it's hardly ever 71. Next thing is the 'parents' tv will just randomly turn on for about 6 seconds and then just shut off on it's own. This happens as much as 2 or more all at different times day and night doesn't matter. It really scared me the first time it happened at about 3 AM. Brian and Ava had seen it happen many times before but I always missed it. The volume was up so I immediately tried to figure out how to turn it off... then it just shut off on its own. And one more thing I've noticed. When I write my blog posts an entire paragraph would disappear. I've started copy and pasting them to word to save things as this was very frustrating. This never happened before. In her blog whatever I type stays there until it is posted. It saves words on it's own.... the words disappearing is weird. And last but not least the monitor will just turn on by its self. Ava is not hooked to the pulse ox. all the time so it is turned off... we will be sitting here and the machine comes on... weird, right? BUT like I said we know that God is here and we just turn it into humor. If you know us, medical stays, surgeries or treatments we always find a way to bring a smile to our day. It helps lighten our way.

Ava and I did three laps around the unit this morning. Ava facetimed her sisters for about an hour. Then her and I played Scattergories. We just got started with the game. It was about 12:15 and she says, "Mom, I have to poop. I unhooked her suction and unplugged IV pole. She came out happy. She proceeds to say, "It stinks in there!" I look and see a huge pile in her 'pee hat'. Dear Lord we have POOP! I hugged her and we celebrated. I said... "How can we tell Maja?" I pushed the nurse button it was Maja. She said, "How can I help you?" I said, "Can you come in here? She came in, Ava says, "Guess what?" and pointed to the bathroom. The celebration of poop... yep that is us!

We only celebrated for a few minutes and then Maja took Ava's temperature. 101.3 No!! A resident came and checked on her then another. He ordered labs. Maja drew from her PICC line and then her and another nurse looked for a good vein to do a regular blood draw. They used a weird green light to help find them... none worked. Thirty minutes or so later they bring two helicopter medics in to see if they could find a vein. They too looked and tried and couldn't get blood to come out. Now it was over an hour. Ava was so patient. I knew she was not doing very well when she stopped talking. How could they not find a vein? They were going to look for a vein in her feet when another nurse came in with an ultrasound machine. Then one of her doctors came in to check on her. So many people in her room. A lot of bad memories came back... are we still here again? This can't be. Five pokes and an hour and a half later they were able to draw blood. I asked Ava when everyone left. "Why didn't you cry?" She says... "I'm used to it." It broke my heart because this is exactly how she was when she was two and three. Sadness was in her eyes and that is hard to see yet again. What could cause this fever? I am so excited she pooped Praise God!! Not the way we wanted to celebrate at all.

She was wore out and very tired after all that. She got some Tylenol and went to sleep. She got a good hour and a half when the mobile x ray machine came by to do a chest x ray. She was not very happy to be woken up. It's now 8:30 pm and she is still sleeping. We will celebrate tomorrow. I just checked her NG output and it has only been 200 ml's in 8.5 hours.... best ever! Keep the prayers coming. I'm starting to feel like a caged animal. Tomorrow we will have been here 12 out of 13 days if you subtract the one day (Saturday) we were at home, I want to thank God for the stool today. It's what we've been praying for all week. Yay for POOP! (Sorry Ava don't kill me for posting this... hey at least I didn't post the picture of the poop! Pssttt it was HUGE!) Her temperature is back to normal. The did a ton of blood work and chest x ray. No word yet on the results. The plan... if the fever returns they will start her on antibiotics. Pray it is not the new PICC line. 

She has literally been sleeping all day except for a few hours.

Thank you for your comments. I read them to Ava and we get so encouraged by everyone's words so keep them coming, We LOVE them and appreciate you all.