Friday, August 5, 2011

Another Transfusion

Yesterday we had another full day of transfusions.  I knew when we got ready in the morning that she would need one.  She had very obvious petechiae - little purple spots caused by low platelet counts - all over her legs.  This happened last month, so I was prepared for the long and tedious day in the hospital to get her back on track.  The clinic was very busy, so it took longer than usual, so we didn't get into a room for 2 and a half hours.  It took an hour to get her situated, weighed, measured, blood pressure taken, temperature taken, and pre-medicated with Benadryl and Tylenol to stave off any possible reactions.  Platelets ran for just over an hour.  Blood took 4 hours.  And, of course, despite being pre-medicated twice, Scarlett still had a minor allergic reaction at the end of the transfusion and needed a back-up dose of hydrocortisone before being discharged.

We also were told that her white cell count was undetectable, so low that it did not register.  This is disturbing, since she gets a daily injection to prevent that.  No one seemed very concerned, since she feels fine.  We just need to be cautious of exposing her to any external germs, and hope that nothing internal decides to act up before her counts rebound.  

We are hoping, hoping, hoping that this is the last cycle that requires so much medication and blood.  The next cycle, which starts near the end of the month, will be much less intense and should have a less severe reaction.  She is just beginning to get her eyelashes, brows and even a very fine, very blond layer of hair coming on on her bald little head that we want to keep.  It is a strange idea for Chris and I both...Scarlett with hair!  As sad as it was for her first hair to fall out, I can't imagine that cue-ball head with hair!  Will it be curly (like mine was) or straight (like Chris' was)?

A social services update:  we are IN at the early intervention program!  When we arrived for the evaluation on Wednesday, the social worker and doctor assured us that Scarlett qualified, that they would get everything arranged for therapy ASAP, and that everything should get much easier from here on out.  They cover physical and occupational therapy, but also put in requests for hearing and speech through the school district.  From the time we left the office to the time we got home that afternoon, the social worker had already CC'd me on 4 e-mails to wrangle services for Scarlett.

Still waiting to hear from a variety of agencies, including Social Security, California Children's Services, American Cancer Society, National Children's Cancer Fund and the blood drive team.

Ooh! and Chris has a BIG job interview on Monday.  Fingers crossed!


Tiffany said...

Fingers crossed for Chris! That is exciting! I am glad that social services is going to make things a little easier for you, it sounds like the social worker is really on the ball.

Magnus said...

That sounded bad about the white blood cell count, hope the count will come up really quickly. Very good news that you get into the early intervention program (not that I doubted that) it makes a lot of things easier. Lily gets her OT and PT through CCS and her speech through the Regional Center. I think Scarlett will be too young to have the school involved yet, we heard that they doesn't take part until the kid is 3 years old. You might want to investigate the Golden Gate Regional Center, but I would expect that the social worker will figure it out eventually :-)
Yes, and Good Luck to Chris, hope for an excellent interview!

MC said...

I will keep your little fighter in my prayers. I hope that Chris' interview goes well! Hugs from PA

Chicory Blue said...

Yay for EI! I knew they would be your first "success". If Scarlett ever doesn't qualify for something now (like speech because of her age, let's just pretend)...ask when she can be re-tested (it is usually either 6 or 12 months-depending on agency and test they use) mark that date in your calendar...and if you still have concerns request new testing when that time period has elapsed. You do not have to wait for the EI staff to say she needs retested.
Good Luck with the Interview Chris!

Lady Niblet's Mama said...

Looks like things are starting to look a little brighter! Wishing Chris lots of luck on his interview.

Jennifer said...

Wow so glad you got the therapies all set! What a relief that must be. Sorry to hear about the long day of transfusions and low white count, but it sure sounds like overall, things are looking up! We are rooting for and thinking of your sweet girl daily. Can't wait to see some hair in future pics! My baby is only just now getting some sprouts (she's almost 9 months) and we can't wait to see whose it looks like too! Luck luck luck to chris on his interview! :)
Best from FL. <3

April said...

Hoping Chris' interview goes well today. I am glad to hear the Social Services have started rolling also.

Karen said...

Great news about Social Services and Chris' interview! Fingers crossed!!!!