Week 2 of Pre-transplant Testing – No, we’re not done yet.

It’s only Wednesday, and already we’re all feeling a bit exhausted.  Since we last updated you all, Idan has had a few more days of testing.  Last Friday, he had his echocardiogram and EKG.  Yesterday, he had a blood draw and we had conferences with the pharmacist, social worker, RN, and child life specialist.  Today, he had a CT scan, another echocardiogram, an infectious disease appointment, and a failed blood draw that we’ll have to repeat tomorrow.

Today was by far the most difficult day.

We woke up at the crack of dawn for the CT scan, and after another night of fasting, we brought Idan t the hospital at 7:30 in the morning.  He was a better sport about it than we were, smiling and playing all the way to the hospital.  We and Idan’s team decided that it would be easier on Idan if he was asleep for the CT scan, because it would mean less restraining during the scan and that we would also be able to easily finish the echocardiogram (which was halted last week when it became clear Idan was not happy with sitting still for so long), and place an IV that could be used for the blood draw in the afternoon.  The advantage with doing all this in one shot while Idan is asleep is obviously to avoid unnecessary trauma for the little guy.  Unfortunately, the sedative did not do its job very well, and Idan was awake (albeit a bit loopy) for it all.

So we had a very long morning of trying to entertain and restrain Idan while he underwent a CT scan and then a second echocardiogram.  Poor little guy wanted to play and socialize and is wondering why he can’t move his hands or turn on his stomach.  But that was the easy part.

After the two tests, the anesthesiologist came back into the room to place the IV.  Under our previous plan, Idan would have been fast asleep and would not have noticed a thing.  But Idan was wide awake, and starting to realize he had been fasting all morning.  The needle went in, but no blood came out.  So the needle went out and back in again and again, but no success.  Eventually, we gave up and decided to go to the clinic for the blood draw without the IV already placed.  (For those of you who are confused why we’d have the IV placed at this time, it is because we were at the Children’s Hospital, which is more accustomed to drawing bloodfrom babies Idan’s age than the clinic on the other side of town.)

Then, after feeding Idan, we went to our next appointment with the Infections Disease specialist at 11, and afterwards headed over to the clinic for the blood draw.  Again, the needle went in and out, this time in both arms with no luck.  The day ended with three limbs dotted with little holes, and no blood drawn.

Each time, poor Idan could not take his eyes off the needle digging underneath his skin for a vein.  Worse yet, he could not understand why his mommy was an accessory to this invasion.  Such is the case with every procedure that is done.  The parent participates in each procedure to keep their child calm and to make sure the child does not move.  But what happens when the child is poked and prodded and restrained over and over and over again?  At some point does the parent, who at one point may have comforted and soothed the child, become the enemy?  Will my tight squeeze soon be associated with pain and discomfort instead of love?

These are the thoughts and fears that ran through my mind as I watched the needle dig under Idan’s skin – no pun intended – all in vein.  As I pressed my arm firmly across his small chest and sang Idan a lullaby, I looked across the room to Akiva who was sweetly distracting Idan with funny faces and multiple toys.  How lucky Idan and I are to have Akiva in our lives, making us both laugh and smile our way through this ordeal.  This afternoon, after all the tests were over, Akiva let me have a good cry while he entertained Idan in the other room.  When I calmed down, I walked into the room to hear Idan’s giggles and watch them sharing a bag of Bamba, their favorite snack.  I am glad to have my answer, and hopeful that tomorrow will be a better day.