bloody good advice

Some stuff we've learned as we've gone along:

1.  Always carry as many ice packs to immunizations as you've got legs.  The first time Harris was immunized, he had shots in both legs, but I only had one ice pack.  I looked like an episode of "I Love Lucy" trying to ice two legs with one pack. - endre

2.  This tip comes from Awny: Have both parents (or caregivers you might want infusing) infuse on a regular basis.  Her son only wants her to do his treatments because she's the one that has always done his treatments.  It's helpful if kids have experience with multiple "infusers" so that they have confidence in the abilities of more than one person.

3.  Soft tissue injuries (ie - if your kid busts his face on your barstool) require infusions. - nika

4.  When you go for infusions, bring a distraction other than what you need to breastfeed.  Bubbles are a good choice.- nika

5.  When you go in for an infusion - especially one that is not planned- just tear off the section of the box that has all of the information that you need for your infusion log.  That way you can take it home and add it to your paperwork when things have calmed down a bit.  This way you avoid being the crazy, frazzled mom yelling out "Does anyone have a pencil I can borrow?  Anyone?  Anyone?" - endre

6.  Try not to make an irritated face at the intake nurse when she asks you "so is your baby experiencing pain" when you take him in for an infusion because his forearm is swollen up like Popeye's.  I went with the classic "eye roll behind the back" instead. - endre

7. Immunizations should be given subcutaneously (under the skin) not into the muscle.  The nurses might tell you that this can't be done.  It can... and it will.  Also, to avoid muscle bleeds from inadvertent poking, ask your nurse to use the shortest needle they feel comfortable using.  -nika

8.  Schedule your child's immunizations for the same day as his prophy treatments (ie- prophy in the morning and immunizations in the late morning).  It makes for a lot of sticks, but it is a lot better than several days of infusions to get a muscle bleed under control. -nika

9. Sing, sing, sing. Zander calms down so quickly when we sing, our wonderful nurses sing too-nika

10.  If your child has a picc line this a great tip from one of the hemo nurses to help keep it covered, clean and dry - Instead of that stupid mesh thing that they give you to cover it that serves no purpose except to be pulled off by your kid, buy some inexpensive socks (or use your mismatched ones), cut the toe open and voila.  Insta-picc-cover.  Put the toe part on first so that the heel area is at the elbow and the finish edge that goes up the leg is at the wrist.  I promise, they work like a charm.

11. Bring your infusion log to your comprehensive visit. This way you will have all the information needed to keep HTC records current.

12. Get to know your kids joints. Our PT said that if you look at your kids joints (mostly elbows, knees and ankles) you will be better able to identify a joint bleed early. The best time to do this is right before or after bath time. Look at how they move, how and where they are chubby.

13. Get the port.  It's way mo' better. - endre

14.  Keep calm and infuse on. -endre (plagiarizing Winston Churchill... sort of)

15.If your kid is going to cub camp, and one of the chaperones is a nurse and one is a doctor... put the nurse in charge of emergency infusions.  The doctor will look at you like he's never seen a needle before and ask the nurse if she knows what you're talking about.