Alex is still having a real hard time with the Prednisone. It's just awful to hold him down while he pleads with us not to take the medicine. I'm going to check with the Pharmacy at the hospital today to see if they have another "syrup" that we could mix with the crushed pill. We've already ruined cherry, raspberry, and chocolate syrup, along with orange/mango sherbet, and ice cream. He can taste the Prednisone through all of it.
We are trying the mini m&m's - but so far, no luck...
Today, Alex has a Chemo appointment at the Clinic, and then a Spinal Tap (Lumbar Puncture - LP). So, no food after 10 am, and only clear liquids between 10am and 2pm - with nothing by mouth after 2pm. With his increased appetite, this is going to be hard. I cooked pancakes, sausage and eggs this morning, trying to fill him up as much as I can. At 9:30am I'll try to get more food in him to last the day. I'm so glad that the doctors consider "Jello" a clear liquid. At least he can have that after 10am.
He is taking the Prevacid, and the Miralax without issue, and allows us to flush his PICC with the Heprin each evening.
I have a bunch of questions to ask the doctors this morning:
1. We were told to keep him away from bark dust, since it can carry a mold that is really harmful to people with suppressed immune systems (unfortunately, that's about half our yard). What about the wood chips found in parks? Do we need to remove the bark dust we have - or just keep him from digging in it?
2. Any other tricks on getting a 3 1/2 year old to swallow a pill?
3. Does his PICC dressing need to be changed again (a little blood around the insertion site)
4. A friends child (K) has Hand Foot and Mouth Disease (a virus). Her other child (L) has already had it, and so has Alex. Can L be around Alex while her brother K has the illness? Or do we need to stay away, and if so, for how long?
I think I'll go on a small road trip with Alex and Tessa this morning to keep Alex away from the pantry and refrigerator. He's sitting on the couch watching the Wizard of Oz (he calls it the "Lizard of Pause"), and eating cheese sticks. I'm encouraging him to eat as much as he can now, since I have to cut off the food in 50 minutes.
Well, I've got to go clean up the kitchen, and get the Jello ready for him...
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Hi Sara - can you put the crushed pill into juices? I would think that cranberry juice has a "big flavor" that might mask some of the taste. Have a couple of ounces with the pill in it to drink first, with an immediate chaser of the juice with no pill to take away any unpleasant taste
ReplyDeleteThe "Lizard of Pause"...LOL! Man, I love that kid!
ReplyDeleteI know you've tried just about everything, but the grape flavoring at the Target Pharmacy did the trick when Lukas was on Prednolisone (another nasty-tasting oral steroid). If you're at your wits' end, it may be worth a shot!
Hang in there, Mommy! You're doing an amazing job, and you will find a way to make this work!
much love,
Erin
Hang in there, Alex!
ReplyDeleteWe love you, and are praying for you everyday.
Love,
Cousin Annie
Eric & Sara - Just heard the news today, I'm so sorry... Alex is a strong little boy though and will make it through this even stronger. Our thoughts are with all of you. Please let us know if there's ever anything we can do. I'm checking out the marrow donation process next.
ReplyDeleteMichelle, Gary, Ryan & Katie
What Cancer cannot DO
ReplyDeleteIt cannot cripple LOVE
It cannot shatter HOPE
It cannot corrode FAITH
It cannot destroy PEACE
It cannot kill FRIENDSHIP
It cannot supress MEMORIES
It cannot silence COURAGE
It cannot invade the SOUL
It cannot steal eteranl LIFE
It cannot conquer the SPIRIT
author unknown-
I don't know you but a friend of mine sent me your site and has asked for prayers... I will surely be thinking about you!
ReplyDeleteI am a Child Life Specialist at A children's hospital. Basically, my job is to help kids cope with being in the hospital by explaining procedures, helping them cope through procedures, educating them about diagnosis and many other things. (You should inquire about a child life specialist at the hospital you are at if you have not met one.)
I just wanted to comment on the pill situation. It sounds like you have attempted one of our methods (mini m&ms) but I would try to start smaller. Try a nerd first and build his confidence that way. Then see if he can do a mini m&m. Also, maybe try to put the pill in applesauce (as long as it can be taken with food). You can also "practice" with nerds and m&ms in the applesauce before you try the pill.
I hope this helps and I certainly will be thinking of you and your family!
-Abby
I hope we aren't quarantined for life!! I am just kidding. Whatever it takes to keep Alex and Tessa healthy. Lizard of Pause- that is awesome. We are thinking of you! :)
ReplyDelete