Sunday afternoon we were transferred to the regular Heart and Kidney unit (out of the cardiac intensive care unit).  This meant a lot of changes, and not all of them positive.

Of particular concern to us was that the nurses staffing the unit didn’t seem as competent or concerned with Tiptoe’s care as they did in the CICU.  M and I have known fantastic nurses; nurses who met and exceeded our needs as parents and advocates for Tiptoe.  When we meet them, we make sure to let them know how much we appreciate their work on our daughter’s behalf.  A good nurse is a blessing.

I don’t think we had any bad nurses; we have had several that just didn’t get the job done  very well.  They were perfectly nice—but not what I would call competent.  They seemed comfortable cooing and making baby-talk at Tiptoe, but not in managing her wires, or answering our questions, or engaging us in Tiptoe’s care.  They were not responsive to requests made for pain medicine; they seemed unconcerned by alarms going off.  (We timed it—three minutes for a response to an apnea alarm, on a toddler whose respiratory system is distressed, cannot be considered an effective response.  Thank goodness it was just a faulty monitor—Tiptoe wasn’t even asleep.  Still: the nurse hadn’t been in to see her in hours, and we hadn’t seen the nurse in the hall, even.  It’s the what if’s that are frightening.)

This is one of the reasons why one of us is always with Tiptoe in the hospital (when they allow it): because we cannot control which nurse gets which patient, but we can work to get her the very best care possible.  The child is in pain, intimidated, and hardly vocal; it’s up to the parents to be vigilant and involved.

I sound like Mad-Eye Moody. 

When she was moved out of the ICU to the floor, they removed her arterial line, and had to replace the IV in her arm.  In typical Tiptoe fashion, all her veins were unavailable.  And unassailable.  Children’s has a “professional” team of IV folks; their one job is to get an IV.  Five sticks, and it was no joy.  They postponed the IV putting in for a while; later that evening, they were able to get it in one stick.  They did a lot of prep work, which Tiptoe didn’t appreciate, but I did; when he found the vein to tap, he was able to do it quickly.  What’s that old saying?  Measure twice, cut once; it applies to IVs, too. 

We got roommates on Monday afternoon—a couple with a tiny baby.  Poor thing was up all night, mostly because Tiptoe was up all night, whining and being uncomfortable.  But we haven’t had a roommate since…so maybe the hospital is learning that Tiptoe is bad company.  It’s a pleasure having a room to yourself (even if there’s no TV, and no internet, and the lighting is bad, and the chair is uncomfortable, and someone is always wanting to take your blood pressure or shove something uncomfortable into your body). 

The prognosis at this point is as follows:

1) Urine output is good.  So is solid waste.

2) Still draining from the tubes.  It is slowing down, but still significant.  As long as it remains significant, we will stay in the hospital.  So—no date for homecoming yet.

3) Tiptoe’s pain seems to be slacking off little by little.

4) Tiptoe is up and moving around; M and I are learning how to carry her wires, tubes, and sundry medical equipment.

Thanks so much for all your support.

–Scott