Day 96, April 20
Sorry we’ve missed a few posts…we’ve been busy…(This is a long one because I’m trying to play catch-up. Trust me, our last few days have not been uneventful.)
Thursday - Ally had another restless night Wednesday night and into Thursday morning. She lounged around and played a bit Thursday, so we were glad she was feeling better after getting sick so much on Wednesday.
Thursday night…Ally was hooked to her IV backpack. It was another restless night of sleep, or non-sleep for her. About midnight, Ally got herself all twisted in the IV tubing. I was worried it would happen again, so I got into the bed with her. She tossed around most of the night.
Brad’s stomach was bothering him before he went to bed. He was up a few times until finally he got sick about three in the morning. I went to the other bedroom hoping to get at least two hours of rest before I had to get up. (Remember, Ally had her hospital visit for the spinal tap and chemo admin Friday morning.) It’s about 4:15 int he morning…I was just about ready to nod off to sleep (the first sleep of the night for me) when I heard a rumble outside. I thought it was thunder…I’m thinking, “Wow, sounds like we’re going to get a bad storm.” Well, the rumble got louder and the windows started to shake as well as the house. EARTHQUAKE! - no kidding…we had an earthquake. I jumped out of bed and went right to our bedroom. I knew Ben was safe in his crib, but I wanted to check on Allyson. Just as I got to the door, Brad jumped out of bed a bit dazed asked if we were having an earthquake. It was a long one…maybe 45 seconds. That doesn’t seem like much, but when the earth is shaking, that’s a long time. — Well, by this time, I was wide awake and figured I might as well stay up…What else could happen, right? I couldn’t sleep anyway…I was trying to figure out how I was going to keep Ben away from Ally’s backpack and get everyone dressed and out the door by 7:30 (and to St. John’s by 8:30) without Brad’s help.
We made it out the door and to the hospital in time. I called my sister, and she met me up in the PICU, so I wouldn’t be there by myself and I’d have help carrying out all our medical supplies for the weekend. - Ally did very well during her procedure and treatment. She actually had an echocardiogram done as well so we wouldn’t have to come back to the hospital next Friday. Let’s just say, Allyson wanted nothing to do with the ECHO, at least at first. I had to get up in the bed with her…Kay popped in a Backyardigans DVD…she settled down…the nurse was able to get all the pictures she needed in about 25 minutes. We left the hospital about 1:00 in the afternoon.
Friday night was a better night. Brad slept all day and finally got up about 6:00 that evening. Our neighbors came over with dinner, so that was nice. - I crashed and crashed hard that night because I was exhausted.
Saturday was a pretty good day. The nurse came out to draw blood about noon. Keith and Cheryl came over in the evening. We had a nice visit.
Sunday morning seemed to be going OK until Ally threw up about 7:00. We’re fairly certain it was the chemo this time as this particular type of chemo can cause nausea and vomiting. We gave her anti-nausea medication today because we were worried her tummy was not well.
The nurse came out this afternoon to draw blod again…just in time. The alarm on one of her pumps went off, stating there was a block of some sort and her dose of the “rescue drug” would not start. We had no way of knowing how to fix it, so thankfully, Nurse Shelley was in the driveway as it was happening. As Shelley stated, if she hadn’t been there, she would have had to speed over to the house with police escort to get that dose started…that is how important it is. Ok, yes she did say she that, but there really wouldn’t be a police escort. She was just stressing how important it is to get that drug dose on time.
All is well now, right…no, not exactly. We put the kids in the car to go to Walmart to get sand for the sandbox. I took Ally to the bathroom and noticed blood in one of her IV lines. Not good - not life threatening, but not what you want - it could block the line…We had to go home to flush the line and clamp it until her next dose was ready to be delivered.
Plans were in place to replace bags of medication a little after midnight. We kept our fingers crossed, hoping Ally’s little body would clear the chemo tonight so we could get rid of the darn backpack. We weren’t hopeful though because the last time she had the backpack, her dose was less than this one and she didn’t clear it until Monday.
Some good news after a long weekend…Nurse Shelley called - Ally cleared the chemo in record time!!! Shelley came back this evening to unhook everything and take away the backpack!! YIPPIE! - Ok, she tried to show how to take off all the bandages and pull out the needles. (I pulled out the needles last time, but I didn’t like it. This time I had to do the whole deal.) Well, Ally HATES (yes, that is a strong word but the most appropriate one) to have the bandages taken off. She got really scared and cried while I was trying to do it. I got most of the bandages off, but I couldn’t finish. I just couldn’t do it - Ally just gets too upset…Shelley was so nice…she said I didn’t ever have to do it, that they would come out and do it for us. Thank God! It was just too hard to do that to her.
Both kids are in bed. I’m really tired. Tomorrow is a work day…After the last few days…I hope it will be uneventful.