Well, we are here at the hospital again, just a mere 3.5 weeks since the last transfusion.  Adahlia has her IV in place and we are waiting for blood to arrive, so we headed down to radiology to watch fish swim.  This hospital has a couple really nice fish tanks – the one in radiology has a saltwater tank with several fish straight out of Finding Nemo, and the one near cardiology has several larger fish… I think they are freshwater.

It says something about your life when you know which departments to go to in the hospital to find fish and pass time.

Adahlia had one of the worst IV placements in a long time.  Not through any error of the nurse administering the IV, but because we first allowed a phlebotomist to do a finger prick test to ensure she needed blood.

The phlebotomist was one we knew from the northern children’s hospital location.  It was a pleasant surprise to see her… Even though it only serves to illustrate how often we frequent these facilities.  She performed the finger poke without incident, and results came back as I expected: 7.2 Hb.  

Which of course, requires transfusion.

But Adahlia was under the impression that by doing the finger poke she was getting out of the IV.  (Because usually we get a finger poke to check her Hb when I suspect transfusion won’t really be necessary.  The northern campus location is 30 minutes closer than the main campus, so we go there for a quick Hb finger poke check, which makes a difference when you’re doing this every few weeks and you’re trying to preserve your kiddo’s veins.) 

The nurses wanted to be sure she needed a transfusion before placing an IV, and when I asked Adahlia, she said a finger poke was ok.  I had thought I communicated properly, but in retrospect,  Adahlia clearly did not quite grasp that the one procedure might lead to the other – she thought it was an either/or situation.

So as the nurse started setting out the tourniquet, she suddenly  threw up quite a fuss, screaming that she she didn’t want them both on the same day, and of course the nurses are busy, and I didn’t feel right asking them to come back later, so we quickly did it anyway.  

The IV itself was flawless.  After, I tried everything to calm her, but she was clearly wounded by having a procedure done against her will, when normally she agrees bravely to transfusion.  “I didn’t want both in the same day,” she sobbed. I offered to take her to see the fish, and she replied, “they might make me happy,” only to start wailing again.

I continued to hold her and explained how if we didn’t do it today, we’d have to come back tomorrow, and she’d miss school, and Friday is dance class with Miss Rachael.  She seemed to internalize the wisdom of this and then broke down in tears again, and it was only until I started crying too and told her that I was sad, also, by how it went, that she dried her tears and agreed she was ready to go see the fish, because we both would like them.
The biggest takeaway here is how important it is to honor a child’s will and sense of self ownership in medical procedures.  Adahlia has always faced her transfusions and finger pokes bravely… But then, I always consult with her about it,  explain why I think it’s necessary or best, and give her time to digest it.  Then, when I ask if she is ready, she almost always says yes, and doesn’t cry until the actually IV, if at all.   This allows her to feel respected, that she has some measure of choice, instead of simply being violated.

You might think this is obvious.  But many of us are too busy and wrapped up in what “must happen” to take the time to explain things to our kids.  Or, just as bad, we fear their reaction and aren’t equipped ourselves emotionally and creatively to handle their refusal and fear, so we spring “bad” things on them as a surprise.

Is it any wonder so many kids grow up distrustful and resentful of authority?  Of their own parents?

Remember, kids live in a world of wonder, where they get lost in the magic of a bug or, as with Adahlia yesterday, the “beauty” of a store. (Adahlia complimented the owner of the bulk foods store, “what a beautiful store you have!” quite a few times.  It was sweet.)

Kids need time to adjust to transitions as simple as getting in the car and going someplace else, and much moreso when they must get vaccinations or endure other unpleasantries.

After all, think about it:  they pretty much follow an adult around all day, being pulled in this direction and that, and rarely does the parent tell them what it’s all about or why they are going where they are going.

We wouldn’t expect a spouse or lover to go along with our daily to-do lists without an explanation, why do we expect it of our intelligent kids?  Don’t you appreciate knowing what you’ll be expected to do tomorrow, instead of having someone redirect you every time you pick up your book or sit down at your computer?

Today was a perfect illustration of how preparing (or not preparing) your child for a painful or unpleasant procedure can make all the difference in his/her perception of trauma.  And today, sadly for both of us, was a traumatic day that could have been avoided if Id been more aware of my daughter’s comprehension of the situation.

Of course, readers of this blog will wonder why Adahlia went only 3+ weeks between transfusion.

The answer is that she had a very nasty GI viral infection for about 7 days after her last transfusion.  It is typical for the spleen to chew up transfused RBCs  in addition to the other cleansing work it’s doing in the blood during such acute infections.

Hopefully, after this transfusion, she won’t get sick, and we will get a better idea of how she is doing in terms of DBA.  And hopefully, we won’t have to come back for at least 4-5 weeks, or maybe even 6.  

But with this disorder, who knows?

We might as well just draw on our faces with markers, and dance to the imaginary animal parade (which is what Adahlia and I did last night).  

Nothing is guaranteed… Everything is possible.

And when phlebotomy gets you down, find a fish and feel better.

Love to you and yours.