Week 20 part 3

Wednesday
Okay, well, Grayson napped for 4 hours yesterday. Me? My mind was racing and I only got in a 30 min one. There is so much to do at home. So much to worry about all around. I cannot shut my brain off. So frustrating. It was one of those night time sleeps in which my body was totally shut down from exhaustion but I could feel my mind going. I heard when nurses entered the room every 4 hours but had no energy to say a word to them or turn my body to acknowledge them. It was a rough one.

On the positive, Triston's excitement for Christmas is out of control. I thought last year was fun to watch unfold but this year is awesome. And what a year for him to be...he deserves it all. He has survived these past 5 mos amazingly. Very similar to Grayson's road map, a few bumps in the road emotionally and security-wise. My pride for that independent, smart, mature 5 yr old (still have a hard time saying that numeral!!!) is unwaivering.

His excitement level is pretty high today, too. Amy and Ayden were supposed to babysitt and sleepover yesterday but A came down w the stomach virus that is floating around. I told her to keep him home and I would come up w the at-the-time-nonexistent-plan B. We REALLY need to stop the cycle! And poor A wanted to be there so bad that he kept telling Neal and Amy that he would "play far away from Triston" and "G in the hospital so I don't have to get him sick, too". He tried so hard to convince them as "the pee is coming out my butt", his definition of diarrhea. But all is well today and they are heading to our place this am.

Triston has had a fun-filled week, actually. Monday he had a play date with his old school buddy Jackson (thank you, Alysa). Then a surprise visit from his Ninang Leslie Monday night and Tuesday night. She IS a big kid through and through and was able to help us in a jam with a bonus FUN play mate for T. You should have heard the squeal in his voice when I called him to say she was returning last night. It really is the fun he needs on vacation, in my absence, and the best kind of healthy distraction. I can only allow so much computer games, Wii and tv.

As for Grayson he keeps playing away and winning over each person that walks in this room (donning their isolation gear of course). This morning we had a visit from some local police officers dropping off toys. He received some Hotwheels and a Mr Potato Head. He is loving cars lately. And the opening of these packages have become my bribe for eating bites of anything and drinking!

As for updates:
His Tuesday 3 pm metho draw was 1.32
Tuesday 10 pm draw was .52 ( found that out at 8 am today)
Dr Kwon visited at 9:30 am today and was pleased with progress. I asked for a CBC seeing as Kwon talked so confidently of us being home today even though neither of us had the latest metho count. Kudos to his optimism!
Received CBC results by 10 am and Hgb 8.8 Platelets 327 WBC 1.6 All good counts
Still do not have his ANC (whether he is neutropenic)

Will be interesting to see that ANC count bc his WBC is good and yet he tested positive for RSV. Remember I said he came in Sunday with cough that started Friday night? By Sunday afternoon I treated it like an asthma attack and he was cough free Monday and Tuesday. He woke with a bit of cough this am but that followed a crying fit. I stepped out to get coffee and when I returned the respiratory therapist (one I am unfamiliar with) had woken him to treat him. He became upset and started crying creating mucous and cough and runny nose. He has has had that runny nose since. That annoyed me, I will say that. Any other person would come back. Kids need their rest! It has set a mood for him and now he is fighting to stay awake even though he is yawning every few minutes for the past hour. I will be reporting that incident. That RPC (respiratory panel/viral nose swab looking for all viruses) was taken early Sunday and we finally got the results this morning. He doesnt seem to have all the obvious symptoms of RSV but he must have been living in him to test positive. His cough was not unbearable, he was not wheezing or having any difficulties breathing. In fact, anyone who has listened to him with a stethoscope since our arrival has commented how clear he sounds. So, who knows. It is what it is. The only thing it made me think of was Caden. He has had a cough/cold for week now. We have been staying on top of it w saline nebrulizer treatments and nose suctioning to be sure that mucous never reaches his lungs. He has not had any wheezing according to Charito. Fellow mommy, Auntie Amy, will give me a mommy opinion today when she's there. But when we saw Belmonte last Thursday Caden was clear as well. RSV is much more dangerous in infants and then w any child if they are having any difficulities breathing, eating, drinking or just functioning. Those characteristics result in hospital stays. Otherwise, it is just treated at home as a respiratory infection that needs to be monitored and clear up on its own. I made sure of those statements with the nurse this morning bc I cannot help but worry about Caden from afar.

Okay, ANC 900. Not bad.

Daddy getting out of work at 3 today so he is going to visit us!


Now we just wait for the results from today's 10 am metho draw.

We just gave G a bath and he is finally down for nap (1 pm). He was so overtired he whined during the whole bath. This whining was an extension of the whining he did when another set of police officers came by with toys and he wanted two cars instead of one. He was too tired to even listen to my reasoning of other kids turns. He just melted. Poor guy.

I hope it is comforting for all you to know how much this hospital works to make sure our sick kids are cared for inside and out, in every developmental domain. Making sure they don't miss out on some of the things they are potentially going to bc of logistics and conditions. They work their butts off to make any special day happen for these kids. It continues to amaze me each week. And I am not just talking about present drop offs. This includes the parking passes, gas cards, meal tickets, volunteer play dates, art activities, story times, hand-made blankets and pillow cases, his own personal ID badge bc he steals the official ones off his visitors, the press related events they have invited him to and so much more. I wish I could describe the amount of care each person shares with him. He is so popular and loved here. That makes me feel safer than ever, knowing I have faces I can count on. They even gave us a Toys R Us gift card and sweet note thanking us for our appearances in media related events. PLEASE! I am totally giving it back. It is OUR honor and pleasure to help them anyway we can. It is US telling OUR story bc knowledge is half the battle. There is nothing to hide here. It is G doing his job to fight and me as his mommy fighting right alongside him. Many of the events we participated in were activities we were taking of advantage of anyway. Our presence was the icing on the cake for them, but the opportunities for play, fun, new experiences and "normal" were thanks to them. It is I who is thankful to them!

Feelings
I kind of feel like I am in limbo this week. I forget Christmas is coming and then remember when a nurse walks in w decor scrubs. Or when I hear Triston's voice. Or turn on the tv with all the santas everywhere. G is obsessed with santas and anything snow related is a snowman eventually. He cracks me up.

I am trying to remember where I hid presents. If I am even done shopping? There is so much to sort through. And then I tried to surprise Charito with a sentimental gift and he discovered it online when sorting through our bills. I can't hide any shopping from him!

And then there's the overwhelming support and care from those around us. Did I mention the bins of Christmas presents that arrived at our home from Triston's shool?! No to mention the cards and gift certificates from the entire school and parish staff. Yes, at some point they organized a letter between the prek staff and prek rooms and we received wrapped gifts "from Santa" for all three of our boys. My sneeky friend Najette passed on my boys' wish list and used it for their own Santa workshop efforts. Again, OVERWHELMING!When I spoke to Triston's teachers (and the spy we call Najette) they explained they did not want us to worry about ANYTHING for the holiday. Stress-free. It's a simple reminder that people with hearts bursting to share love and peace are what we are surrounded by during this difficult time. People who just want to ease the pain for our whole family. We are blessed in so many ways.

So I know it is supposed to be stress-free but I can't help but WANT to be a part of our usual Christmas routine. Make it perfect. And I KNOW it has nothing to do with all the material items. IT IS about FAMILY together but I want it to be perfect for my boys. I want us all together. Smiles everywhere. Love from top to bottom. A positive Christmas to remember.

Just alot to think about that's all.

Update:
10 am draw results---- .16
Still not below .1 but getting there.
Soooooo, one of our fav nurses came in specifically to work w G tonight and she slyly suggested another draw occur before 10 pm tonight just in case there was the slightest chance the metho count would be low enough to go home. I wouldnt even mind going home at midnite tonite! Just the thought of the possibility is reassuring. We shall see. He received a dose of Leucovorin at 4:30 pm and then a metho draw at 5:15. Keep your fingers crossed. It would just be a nice surprise. I was mentally preparing myself for chance of not being home at all for Christmas. I was even realistic of hte chance we would be home Thursday or Friday. But tonight would be great!!!
Keep you posted! And of course, I have goofy pics of the clown to post of this hospital stay. Coming soon!