January 8th 2010

08 Jan January 8th 2010

It’s funny how things workout sometimes.  As you know, we were supposed to go home today, but because of the doctors coming from outside Torrance Memorial to evaluate him and the fact that Tiff’s doctor was unavailable to discharge her made for one more night here at the hospital.

As I shared earlier today, Makoa made great progress in his eating and attachment to Tiffany’s breast.  Although weak, he was able to suck and take down 5cc’s.  They continue to gavage feed him and they have increased his amounts to 40cc per feeding.  The nurses are including whatever breast milk Tiffany gets from pumping now that her milk has come in.

The afternoon was interesting to say the least.  The neurologist from Harbor UCLA stopped by to see Makoa and perform an evaluation on him.  He spent about 20 minutes with him, performing a wide range of physical tests.  Based on what he had seen in the MRI and other tests results, along with his physical exam, left him unsure of a diagnosis.  He wanted to order some additional tests and see what the geneticist says.  He returned to Harbor UCLA with some of Makoa’s charts to go over, and ordered an EEG to check his brain activity.

While we were waiting for that to complete, I received a call from one of the neonatologists in the NICU.  She informed me that with the battery of tests they were going to be performing, there might be a chance that a transfusion would be necessary so I needed to get my little butt down to the donation center and strap myself into the blood chair.  I walked down to the NICU to ask our nurse a couple of questions like “Why can’t we spread these tests out?”, “What does this have to be done today?”  Without answers, I was shoed out the door because the blood donor center was closing in 7 minutes.

I weaved my way down there only to find out that they had already sent the samples off.  The whole reason to do this today was that they close over the weekend and it takes three days for the screening and if it wasn’t ready, Makoa would receive general blood from the bank.  I sat down with the ladies at the blood donation center to go over my blood type (I found out I was O+) and to go over paperwork.  One of the ladies check to see and the carrier hadn’t picked up the samples yet so they quickly threw me on the blood seat and drew a pint for my little man.  Of course, it was on the day I didn’t eat because I was out and got called back for our first Dr.’s appointment.  They gave me an apple and some OJ and I was ready to go.

In the meantime, Tiffany had been on the phone with our pediatrician and Children’s Hospital trying to setup a transfer of Makoa.  From the looks of things, the transfer itself can be arranged pretty easily, the insurance is what we have to worry about.  We continue to pray that God will provide us the means and direction to get him seeing the best people to diagnose and treat our little man.  That brings me to our last visit of the day, our geneticist…

He was supposed to meet us at 7 pm to evaluate and discuss with us his findings.  He was also coming from Harbor UCLA and we were told how lucky we were to have “specialists” coming to see him.   We finally left at 9:45 pm without so much as a phone call or visit from the doctor.  The nursing staff said: “sorry, he’s really busy with his patients”.  Well, Makoa is OUR most important patient and I don’t want to be waiting for people to come from all over the place to see him.  I want him to be where the best people are.

On a brighter note, I wanted to let everyone of you know who have sent Makoa a prayer that it has been read to him.  We continue to read him the prayer board every night and I know it’s making a difference.  I can see him getting stronger each day and it’s a beautiful thing to witness.