January 9th 2010

09 Jan January 9th 2010

Makoa has had another great day today.  Working with the feeding specialist, we were able to identify an optimal feeding position and nipple size for our little man.

As you know, we were granted an extra day here because we were supposed to meet with the geneticist last night.  He never showed.  Apparently there was some confusion and he was supposed to be here at 7am today.  Of course we didn’t find out until around 10am, but we were still able to meet with him.

After examining him, he sat down with us and gave us his diagnosis: “I’m not sure”.  Let me tell you, I’ll take “not sure” right now.  He did say that he didn’t feel that it was Prader-Willi syndrome at all but thought we should rule it out since they drew the blood.  I found out that the first doctor who suggested it wasn’t even pronouncing it right which makes me question the diagnosis to begin with.

We discussed with the geneticist our idea to transfer to Children’s Hospital since no one can seem to figure out the problem.  He agreed it would be a good move and suggested it to the neonatologist on duty.  Of course, their reaction was “we can provide the same level of care and we need to have a reason”.  We’ll, I can give you a thousand of them.

My biggest struggle right now is the pride that the neonatologist are having.  They don’t want to look bad.  They don’t want people to know they don’t have the answers.  They want to keep running tests, taking more blood to see if something matches up in there book.  I understand where they are coming from, but this is not a time to be prideful, it is not about you.  It’s about our dear Makoa and what is best for him.

We did have help from an Angel today, Stacey, who is a lead nurse in the NICU.  She came up to me and said “I understand you want to transfer to Children’s, I would do the same thing in your shoes, let’s make it happen”.  Praise God!  Someone on our side willing to help.

The real issue right now is the insurance.  They need a reason to justify the transfer, something that Children’s can do that Torrance can’t.  The problem is getting Torrance to admit that and say “we don’t have the resources or answers to provide Makoa with the best care”.  We continue to pray that the insurance will cover this.

If it is going to happen, it looks like it will be Monday when insurance offices open up.  There is a particular neonatologist who is on duty tomorrow and she is sympathetic to our situation.  We are hoping that we can wrap this up and get him over to Children’s Hospital on Monday.

It is now 4:15pm and we are getting ready to leave.  You never imagine having to leave the hospital without your child, I don’t have words for the emptiness I feel.  I’m comforted by God and know he will be holding Makoa and us while we are apart.  I continue to ask you for your prayer in comforting Tiffany and the rest of our family as we make this transition home without Makoa.  I’m sure it will be good to have some normalcy, sleep in our bed, see our other beautiful children who we have greatly missed.  Only time will tell, but we both thank you from the bottom of our hearts for all of your support.