Haley’s Giggle

We went to clinic today. There is a BIG difference when heartful hemotologist is around to shepherd us through and when he’s not. For example, today we went for a blood transfusion. Which Hemotologist already signed for. Which the clinic staff should have not only known about, but been prepared to handle us. We get there before clinic even officially opens, just so I can get Haley in and out of a place where a lot of germs have frequent flyer miles in hospitals. As it was, there was one kid sneezing and another kid coughing– neither covering their mouths. I finally had to beg to be put in a room while we wait for the paperwork that they said wasn’t ready yet. An hour goes by, and Haley’s numbing cream will be wearing off (I had put it on a hal hour before we left, then it took a half hour to get there, then an hour waiting). Finally, someone not the clinic admin person says, “Oh, Haley’s paperwork is already filled out.” Then some other nurse said, “Oh she has paperwork? then send her bck to transfusion! I didn’t know she had paperwork!” So, off we go. When we get to transfusion room, we are told by pretty nurse to take any seat we find. I choose one in a room where you can shut the door (the rest are like a waiting room with barcolungers). I put down a blanket (one side is plastic, so even if germs get on it, I can wipe it off). Not two minutes later, pretty nurse comes in waving her finger at us. “You have to get out of this room right now!” I then realize there is a huge difference between pretty nurse and favorite nurse (who also happens to be gorgeous), even pretty nurse and exceptional good nurse. In fact, there is just a blanket difference between the nurses up in New York, and the nurses back home. The nurses in New York seem to get that taking care of the child, especially an infant, necessarily means you have to go through the parent. I’m not peripheral to Haley’s well-being, I’m intergral. I’m the direct link between the nurses and Haley. I am the one who knows what has gone on, and what lies ahead, not Haley. I am the one that is responsible for her well-being the rest of the time when she’s not in the hospital. And this was another difference: New York nurses view  you as an essential care-giver. They don’t dismiss your concerns. They don’t belittle you knowing you might have had a rough night or rough morning, or that none of this has gotten any easier, particularly the nail/needle that puctures my daughter. They don’t slit open the puncture sight so the next time it’s accessed there’s blood everywhere and the mediport is tilted now on an angle. They don’t blame the daughter for “jiggling” when everyone around them saw that Haley was as still as a frozen pond. They don’t have to remind you that they’re tryng to give my daughter the best medicine. They don’t let anything slip. We were all a team– me, the nurse, and Haley (on the minute-to-minute basis). 

Of course I will ask favorite hemotologist and the head nurse for a meeting. Hematologist is New York kind of people and will right away want to solve it.  Really, it just is a matter of a protocol when Haley is scheduled to come. Infant transplant patients don’t come very ofetn, especially not through these DC doors. I will not let them treat it like their other cases. I will not have Haley’s mediport permanently bruised or her skin broken for no other reason than someone wasn’t being careful enough.

I’m still so upset, and I really don’t want to go back there. In two weeks, we head back to New York, where they will check out the mediport and make sure Haley is doing OK. In the meantime, I will stick with favorite hemotologist, as he for now is the only person I trust to get things done. I hope I’m wrong. I hope it’s just me not being able to work the system.

There were no guests today, though Anna went on a playdate at Dana’s (Little Jackson– that was for you, Dave), with Mel (hi Derrin!) and kids.

Funny moment of the day was when I had to inform the nurse that the clip that helps clamp in mediport needle needed to be removed. OK it’s not so funny. It’s sad. Ok, funny moment was Nikki (babysitter who has been helping us with the transition back to DC) tells us she’s going on a Segway tour around DC tomorrow– on July 4th.  Good luck going a block in under an hour.

Things have been so hectic, that I just haven’t had a chance to write. Between getting our home back in order, the kids settled into a new routine, setting up shop back in our clinic, arranging for physical therapy, occupational therapy, and speech therapy, finding a new nanny, and finding myself a new job, I have not had much free time.

I do want to check in though, and I will say that blog entries will be coming more like once every few days, or when there is something to report. There will be a blog entry at least once a week. I hope you put our blog on a gadget on your desktop so you are alerted to when I write a new entry. If not, just check the blog every couple of days.

Haley has grown increasingly lethargic. I hope her blood cell count isn’t too low. I really would like to prolong it until after the 4th. Still, she is as cheery as a daisy, and exciteable as a puppy.

Anna is getting used to her old surroundings quickly. She is fast friends with her old friends, and they seem not to have missed a beat. Thank goodness for Mel and Dana, who have offered to take Anna almost every afternoon for our first week, and even next week. It’s a tremendous help to just get some stuff done, or clean, or put something away, or…

Tomorrow we go to clinic. I’ll know a bigger update for Haley then.

We have been guests at Dana Little Jackson and Mel Oncu’s houses.

Funny moment of the day(s) was how excited Uncle Dave got when I told him I was on my way to Dana Little Jackson’s. She is, as well as all the other regular commentors, a celebrity.

The other funny moment has been Anna who keeps calling her home “washing-toon.”