The little fighter is in a baaaad mood! I am chalking it up to his fighting spirit and the fact that he was up all night last night. I think he just wants to get busted outta here. When he's not complaining, he's quiet and staring off at the ceiling, which worries me because he seems so sad and lost. The hospital really takes a toll on him. Luckily, we expect to go home Wednesday or Thursday. His surgery to place a new shunt is scheduled for tomorrow (there is a big case on the schedule before him, so he probably won't go in until late afternoon), then the doctors will want to monitor him for a minimum of 24 hours before letting us go home.
Last night, Ty tortured us. He slept off the chemo for the majority of the day on Sunday, so he was just restless. I was up with him until I completely lost my patience around 3 in the morning. At that time I rolled over and turned my back to Ty and Lou woke up and took over (I sleep in the hospital bed with Ty, Lou sleeps on the chair/couch next to us). For the next three hours or so, Ty would ask for Daddy every five minutes or so. He was relentless.
"Daaaaa-Deeee.... Um... My head herwts"
"Daaaaa-Deeee.... Um... I can't get comfy"
"Daaaaa-Deeee.... Um... I have to pee"
"Daaaaa-Deeee.... Um... I cold"
"Daaaaa-Deeee.... Um... I sweaty"
"Daaaaa-Deeee.... Um... I can't sweep"
When Ty wasn't badgering us, his pumps were beeping the most obnoxious sound you can imagine. BEEP. BEEP. BEEP. Air in line. BEEP. BEEP. BEEP. Infusion complete. BEEP. BEEP. BEEP. Occlusion. It is a sound that haunts me :) The phone rings while I'm sleeping and I jump up to call the nurse... air in line!
Of course, he's exhausted today. He keeps falling asleep and I'm grinding my teeth because I know this means more of the same for us when night comes. If only I was capable of taking a nap myself. I know... I know... I should nap while he's napping. It just doesn't happen for me. I can't settle down during the day enough to actually fall asleep or even feel somewhat rested. In fact, trying to take a nap only ends up stressing me out because I'm trying too hard to relax.
The best release for me is to get outside, and I did just that yesterday. My friend Catherine came to the hospital to visit with me, Lou and Ty. Then she accompanied me to get a manicure and pick up dinner for the boys. She shared some hysterical stories and we talked about silly, everyday stuff, and it meant so much to me. I soooo need to do that. To get out and talk about fun, normal things. To get my nails done.
Of course, anyone who knows me knows that it's no surprise I left my cell phone at the salon. I thought it was lost forever until my Mom called the room this morning. She said a nice woman at the nail salon answered my cell phone this morning and I should go pick it up. Woo Hoo... I found my phone safe and sound less than 24 hours later. This is not at all uncommon for me. In fact, I was once on a business trip in Chicago, lost my phone in a cab, and someone mailed it back to me from Wisconsin. Another time a NYC cab driver actually dropped off my phone (my entire purse, actually) at my apartment on Christmas Eve (in exchange for my best Christmas cookies). I am unlucky in misplacing my phone, but very lucky in finding it. It's like I always say... in my experience, most people are kind and good!
Can't wait to get my sweet baby boy home again. The doctor says the Cisplatin shouldn't knock him down as badly as he has experienced with his previous regimen, so I'm hoping he will be feeling pretty good and ready to start exercising so we can get him on his feet this summer. In fact, the Physical and Occupational Therapists came by today and they were so great with him. No matter what his mood is like (and as you can imagine, today he was very reluctant), they were so good at forcing him to participate and keep his arms and legs moving. I was so glad they came because every day that he lays in a hospital bed can decrease the strength that we've been working so hard to build up. In addition, the nutritionist put Ty on TPN again (which is intravenous nutrition - sugars and fats). It is a relief because he has no appetite and hasn't eaten a thing in days. His stomach has been deconditioned as a result, and it is too weak to handle any feedings through his belly tube. So, TPN will at least help to keep him strong during chemo. At home we will probably only administer TPN at night until he is eating better on his own. I am so relieved because worrying about his nutrition is one of my greatest concerns. I don't think there's a normal mom on the planet that doesn't worry about what her kids are eating, so imagine what it's like when he doesn't eat anything while taking life-threatening medications. I was told to try and get him up to 1,000 calories a day and I was only getting 300 - 400 most days. It's stressful! So, at least that weight is lifted from my shoulders for the time being. Phew! On the other hand, there are days when I think Gavin might be getting 2,000+ calories!! He is in the middle of a growth spurt or something cuz that kid is getting HUGE :) And, he's getting a bit of a 'tude himself.
Please continue to share Ty's story. All of your positive thoughts, prayers and best wishes keep us all so strong. Tremendous thanks, hugs and kisses to you all.