January 22nd 2010

22 Jan January 22nd 2010

I feel like I’ve just spent an entire day at Six Flags riding the same roller coaster over and over.  As you know, I received a call from Tiffany letting me know that they had found a couple blisters on his foot.  I left work about 30  minutes after the phone call as I new it was very important to be at the hospital with my Wife and be there for her.  For some reason, Tiffany has always had to bear the brunt of whatever information is being presented, and she has had to deal with enough. 

I arrived at the hospital to find Tiff a complete wreck, which was completely understandable.  The doctors had hooked up the IV in his arm again and had started pumping him full of a new type of antibiotic and we’re preparing to put him in an incubator to protect the other children.  My first reaction was one of anger, and I suppose that is only natural when you are dealing with your child.  I wanted to know why we didn’t have any answers.  I wanted to know why he got another infection.  I wanted to make sure they were taking care of him and this infection wasn’t the result of negligence on the hospital’s part.

I spoke with the on-duty neonatologist and she assured me the tests and antibiotics were strictly precautionary.  She wasn’t even sure if he had an infection at all, but they still needed to run the tests and isolate him to protect the other babies.  Here we go again…more tests, more poking and prodding, it just breaks your heart.

While we struggled to understand this new hurdle that Makoa must leap over, we were also comforted by our favorite nurse Stacey.  She is truly amazing and has been one of the best things about our time at Torrance.  She always has a way of explaining things and talking with us that makes us feel like everything is going to be okay.  Stacey is one of those people that you look at and say, “Oh yes, you can tell her light is shinning just a little bit brighter than everyone else”.  It’s fantastic to see and we’re so grateful to have her as we traverse this journey that God has set forth for our family.

We also had a nice conversation with “that doctor”, if you remember from the first couple of days, the one who suggested Prater Willis as a possible syndrome.  He has really turned a corner and has been very empathetic to our situation and has been quite positive about Makoa’s progress.  In fact, he thought that he might not have an infection but it could just be an irritation from the bandages.  However, they must take the proper precautions and start the antibiotics while the tests and cultures grow.  

We definitely started the day at the low of lows, but as the day progressed, the news got better.  First off, the neonatologist told us that all of the preliminary tests for the infection came back negative.  They had to still grow the cultures and wouldn’t know for a couple days, but for now everything was looking pretty good.  It was around 5pm and we were getting ready to leave when we overheard a call from the lab geneticist asking for the neonatologist.  We were expecting the genetic testing results this week so all of a sudden it became a big “oh boy, here we go”.  

It was about an hour of the neonatologist and Stacey going back and forth, in and out of the room, faxing things and calling around.  We knew something was up and there was information coming in about Makoa.  It’s amazing the games your mind plays with you, what this could mean for our family, what this result could mean for our lives.  I was pacing around, I couldn’t sit, my heart was racing like I had just finished a long distance race.  And then… Stacey came over and said:  “We have the results, I can’t tell you too much, but it doesn’t look that bad.  It looks like he has some sort of skin disorder”.

Again, I can’t tell you what an angel Stacey is.  Her mentality has always been, “What would I want if I was in your shoes?”  We waited about 30 minutes until the late-shift neonatologist was starting his shift.  He had been briefed and came over to talk with us.  He explained that there had been an abnormality in a certain chromosome that is seen in Ichthyosis Syndrome.  Ichthyosis Syndrome
 is a rare skin disorder that can show itself in the form of scaly skin.  While he was explaining the syndrome, the geneticist from Harbor UCLA that originally examined Makoa called me on the phone to let me know that this wasn’t really a big deal.  He might have to visit the dermatologist more, but there aren’t any developmental issues that go along with this.

Praise God!  What a relief.  I felt like a Mac-truck had been lifted off my shoulders.  While we still have the Prader Willis test results to come back next week, everybody we speak with doesn’t think he has that syndrome.  If this is just a skin issue, this is the best news we have ever heard!  In fact, when we came home in the evening, we actually found out that his Papa (Tiff’s Dad) has Ichthyosis.  If he is half the man that Papa is, we will be truly blessed because there has never been anyone who has been more gracious and more family focused than him.  I look up to Papa in every way imaginable and I’m sure I will look up to Makoa in the same way.

Like I said, it has been a complete roller coaster today, I think I’ve experienced every emotion possible.  If there is anything that I’ve learned from this, it’s that God is good and He listens to your prayers.  I thank each and everyone of you for keeping Makoa in your hearts as I know it is the key for him to find perfect health.

We are hopeful that Makoa continues to gain weight and feeds well.  We still have a long way to go and a few hurdles to overcome, but once again we are optimistic and thankful for our friends and family.  God’s love is abundant and we are overwhelmed by His grace.  Please continue to pray for us, it truly makes a difference.