February 2nd 2010

02 Feb February 2nd 2010

For the first time in a month I won’t be visiting Torrance Memorial or Makoa today.  I started feeling a little under-the-weather last night and we all thought it was best if I stayed home.  It could simply be my allergies acting up, but it really isn’t fair to Makoa or the other fragile babies in the NICU if I do have something.  I’ve never done well on little sleep, my immune system breaks down and I get sick.  Obviously my sleep patterns haven’t been the greatest over the past couple of weeks, so I’m going to take advantage of being home and shut it down early.

Tiffany and Papa are heading to the hospital to feed Makoa his 8 o’clock bottle.  He ate well today, but apparently our nurse was all talk last night because she gavaged all the feedings.  She said “He was never up”.  We’ll no kidding!!!!  You have to wake him up to get him going!  I think it’s been taken care of.  The head Neonatologist told Stacey and the other nurses to make sure Makoa is assigned pro-active nurses that will work with him to feed.

We also discussed an exit-strategy with the hospital.  We’ve been doing a ton of reading and speaking with people who are familiar with Prader Willi Syndrome.  At the suggestion of others, we inquired about bringing Makoa home with an NG-Tube.  It’s the gavage feeding tube that he currently has in his nose.  It’s much less permanent than the G-Tube which is directly in your stomach, and it would allow us to take him home sooner.  We would have to learn how to put it in and make sure it’s in his stomach and not his lungs.  There are definitely risks involved but the Doctors said that ultimately it’s up to us and they will teach us what we need to know.  They did say that they think he is extremely close to figuring it out and only needs a few more days.

Things seem to be moving quite rapidly now.  We have been in contact with multiple families who have children with PWS.  Some of them are local in Los Angeles and have a pre-existing network of physicians that they can recommend us to.  All the parents we have spoken to have given us much hope for this diagnosis and that the treatment has advanced so much in just a few years.

Our biggest concern right now is insurance.  I understand that it is a business and they need to make money, but the insurance companies make it extremely difficult to understand the coverage provided.  It’s all very confusing and I pray that we can get Makoa the best care and treatment without sending us to the poor house.  Sometimes I wonder what we pay for each month.

That’s it for tonight.  I’m wiped and ready to shut it down.  Hopefully I’ll feel better tomorrow.  Until then…