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Posted by Scott in
Chemo Round 1, Infection, on Tuesday, July 25. 2006 at
For the last 24 hours, Asher's temperature has been normal. That's a wonderful thing!
Today brought out a few different moods. When Asher woke up this morning, he wanted to play his Gameboy and started to talk a lot. Steph had prepared him SOOOO good over the last two days and he took his oral medication (swish and spit / swish and swallow) without argument. All he needed to hear was "Daddy do it, or the nurse do it" and he quickly picked Daddy. He doesn't swallow much of the last one, but at least he swishes really well!
It was good to see that he was feeling so good for a while today! That mood lasted until about 10:30 when he started to look really really tired and started to act more agitated. I tried everything I could think of - we played gameboy, playstation, and all of the other games we had, but nothing would chear him up. Pretty soon we just started watching movies, hoping that he would fall asleep. finally, at 1, he fell asleep. When he woke up, he vomited (only time today), and it was weird during his sleep time, he would randomly shake and wake up and verbally say something we think from his dream. It was very weird to see him sit up and just say something like "don't open the water" and then sit back down and go back to sleep.
Asher's bandage on his head is showing a little more blood in it from the surgery, but nothing to be worried about. We're due for a dressing change on Wednesday and they'll raise the drain pressure too. The neuro team thinks that it will take 14-21 days for his incision to heal due to the size/shape of the incision they had to make due to the area that the shunt poked through.
The "Pain Doctor" Charlene started Asher on a Patient Controlled Analgesia (PCA) to help with his pain. We had upped his morphine to 1.5mg every 2 hours, but for about the last 30 minutes of that period, Asher would get extremely aggitated and appeared to be miserable. What the PCA does is give a constant .3mg dose every hour and it has a button that we can press (or he can press) that will give him a .4mg dose to make the pain go away. That way, he can just be in constant "less pain" and when more focused/extreme pain hits him, we can push the button and get .4mg extra ever 15 minutes.
Asher has full blown mucositis now and if what he told us this evening is true, he probably has sores in his mouth and at both ends of his Gastrointestinal (GI) tract now. OUCH!!!!!!!!!!!!! (A couple of people asked why we couldn't give Asher a Tylenol suppository, and the sores are why we can't)
It also appears that Asher's hair has started to come out. His pillow has a few "tens" of hairs on it tonight and his eyelashes actually have started to come out too. I suspect that over the next couple of days, the back of his head will start to lose more hair where he is on the pillow. Most of the back of his head is shaved due to the shunt surgery, but there's still some areas of hair back there.
Asher's ANC is officially Zero now and we're counting on the Neupogen (Filgrastim) to aid in the recovery of his defenses. Asher has been getting a subcutaneous shot each day now for 3 days. We've been giving them to him in the leg and he doesn't seem to mind _that much yet.
The Nurse assigned to us from today and tonight seem really attentive and good and they are taking the time to talk and care for Asher like a person. The nurse tonight (Amy) spent almost 2 hours in the room with us when she got here prepping Asher for the night and getting his equipment ready for the nightly medication. Asher doesn't even flinch when she comes close now. That's a blessing right there due to the initial concerns I've been having here in the PICU.
Good job, son, I am supporting you with motherly love and lots of prayer these days. Hope you can feel my big HUGS being sent your way often!
We will be sending cards to Asher often so he can get lots of mail to cheer his days. Perhaps others will do the same.
Steph & Scott....I just don't know what to say except that you are in my thoughts and prayers constantly. I follow each journal entry with hope that progress is going well. I know it must seem like an endless battle but you're little angel is responding and will continue to do so. Miracles happen every day and yours will be coming too. Give Asher an extra hug from me today....my heart goes out to all of you. Love, Gloria (Grandma Val's friend)
I also keep up, through the journal. Thank you for taking the time to put it down so we can all know what's happening. My prayer is for Asher to have more moments of not being agrovated, not being to tired, and not being in pain. Moments of joy, and that he see's little things that make him happy.
Hooray for Morphine pumps....
Hope you are over the "hump" soon and feeling a bit better...I used to think I needed the morphine as much as Lizzie did..it is a great help to Asher I am sure, and to you both seeing him more comfortable.
thanks for the posting, both of you., sending prayers your way...
I just wanted to send a note to say "thank you" for keeping us so informed on what is going on with your little man and the rest of the family. Aiden prays for Asher every night that he will "feel better soon". So, Scott, are you going to shave your head, too, and make it the family "cool thing" to not have hair? It can be kind of scary to watch it fall out a little at a time, but if you make it a father/son thing it might be kind of fun! Just an idea. You guys are doing awsome! Asher is a very lucky little man to have parents as attentive and supportive of his every need.
Much love, prayers, and hugs sent your way!!