Friday, November 11, 2011

Nobody Ever Said It Would Be Like This

Ok, I think, I hope,   I’m really back this time.  I missed last month due to complications from my daughter’s transplant.  This blog could also be called “Full Disclosure Please!”

Expectations vs. Reality
I thought “Ok my child will have surgery and everything will go back to normal after.”  Sometimes it happens, sometimes not.  My daughter was re-hospitalized after her transplant but it was only sort of related.  We’ve gone through multiple bacterial, viral, and fungal infections due to her suppressed immune system and sometimes all three at once.  She’s also had problems caused by medications (e.g. antibiotics for bacterial infection cause fungal infection or even cycling back and forth).  

What Can Families Do When Things Don’t Go According to Plan
Plan?  You mean there’s a plan?  Actually there should be a plan, and a “Plan B” just in case.  Parents should have the information they need to care for their child at home after hospitalization.  Even during hospitalization, ask what prescriptions your child is getting instead of waiting til you get the list to go home.   I might have been able to say “Be careful with the antibiotics or add an antifungal agent because my child had a systemic infection that took a year and a half to go away.”  Find out if meds. cause side effects.  We even had to give our child a new med. to counter the nausea caused by another med.  Also, if you child has other issues such as high blood pressure, thyroid disease, diabetes, cardiac problems, cholesterol, etc. check if meds. can make these worse.  You may even have to switch meds.   The hospital gave us a factsheet on each prescription before we left which included “when to call the doctor.”  A great resource is the PDR (Physician’s Desk Reference) listing medications and side effects.  

Complications, etc.
Sometimes besides obvious medication side effects, other conditions may surface.  Even if your child may not have had a condition like high blood pressure, sometimes meds. can cause them.  You’ll need to ask your child’s doctor and monitor carefully.  Remind providers at each visit if your child has medication or other allergies.  We do daily vitals (weight, blood pressure, temperature) which we show the hospital weekly.  We also track when her next labs should be (e.g. one condition needs to be checked biweekly).  It’s also important to ask generally what to look for and to expect.  There’s a virus that only 8% of transplant patients get so OF COURSE my daughter has it.  She’s now being checked for a second condition that only 10% get.  (I wonder what Mr. Spock would say are the odds of having both?)  So although you don’t want to go looking for trouble, it’s good to know what could happen (if it won’t keep you up at night).  One of the things I try to avoid is “catastrophic” thinking such as “what if”.  I deal with what is.    

Insurance -Again
I was surprised that my daughter’s tests were being delayed not because of hospital scheduling but due to insurance approval.  If you have problems with insurance, call Family Voices, which is free help from other parents of children with special needs.  You might have to keep calling the hospital to make sure they follow-up because they won’t schedule it otherwise.  It also makes it easier to plan your work schedule…

Work and Planning
Well, we were supposed to be going to Children’s Hospital every 2 weeks starting in August, then once a month starting in December.  As I write this, it’s October and we’re still going weekly.  And we both work.  I’m grateful that I have flexible hours because otherwise I would be unable to work.  My husband’s employer gave him the flexibility to work four 10 hour days.  One thing other parents can do is use the Family Medical Leave Act which can be “intermittent” (e.g. a day here, a few days there), instead of all at once.    

Here’s hoping things get back to what passes for normal around here soon!

Physician’s Desk Reference (medications)

Family Voices (free health help for families)

Family Medical Leave Act

Remain Hopeful (with a capital H),


  1. This is a great and heartfelt explanation of what it is like to be part of a family with special needs. No one really understands unless you have been through it.

  2. Thanks AnnaLaura-I'm trying to help other families through our experiences! : )