Thursday, June 18, 2009

The meeting with the Doctors

So the air conditioner in our room got fixed and we had the meeting with the two attending NICU doctors this afternoon. However, before I summarize the meeting I want to mention something that happened today.

A couple of days ago, the doctors asked if Brittany and I could meet them on Thursday to discuss Gaines' progress and the plan going forward. They wanted us to be there together...slight problem, who is going to watch Reed. We tossed around a few ideas and then decided to meet with the doctors during Reed's nap. We would simply put him in his stroller (asleep) and take him with us. Problem solved.

As Brittany mentioned in her previous post, things did not go according to plan. Basically the doctors could not meet with us during Reed's nap. We had no idea what to do. There was no way two NICU doctors were going to be so entertaining that he would sit there quietly during our meeting. Our best option was to let Brittany go to the meeting and for me to listen via cell phone.

Brittany and I were both a little frustrated with the situation. While we waited to meet the doctors she posted a blog about it. Within 1o minutes of her posting the blog I got an email from one of the few people we know in DC. She said she had just read our blog, her work was really slow and that she would meet us at the hospital and watch Reed while we met with the doctors. Unbelievable.

Sometimes God works so discreetly that it might be months or even years before you realize what happened. Other times, its like a slap in the face. This was definitely a slap in the face. God reminded us that with all the looming questions ahead us that He will provide for us, no matter how small or how big.

To some of you this story might not seem like that big of a deal. To us, it was such an obvious example of God working in our lives that we had to share the story.

Now on to the meeting. This morning the doctors tried switching Gaines from the CPAP to a nasal cannula. They did this for a couple of reasons. First, if he is to be transferred it would be much easier if he was on nasal cannula. If Gaines is on CPAP he would have to re-intubated and put him on the ventilator to be transferred. Second, it would be easier for Gaines to begin bottle feeding if he could be switched to nasal cannula during the bottle feedings. Long story short, he did not tolerate a nasal cannula at all. After only five minutes on the nasal cannula he had to be switched back to the CPAP.

The doctors then told us that Gaines' progress at this point would be satisfactory for a baby that was maybe only 1 pound at birth. His birth weight was over 3 pounds and therefore they consider his progress not normal. They were quick to remind us of all the positives he has had in the past eight weeks but then consulted us regarding future treatment. Due to his lung progress, they have sent some blood work to John Hopkins to be tested for a rare genetic disorder. They were quick to tell us that there is only 1/100 of one percent that Gaines would have this genetic disorder. While we will spare the details of this disorder, there is no cure for it and the treatment is an eventual lung and heart transplant...not something we want to think about. We will get the results of this test next week. PLEASE pray that Gaines' test results are negative for this rare genetic disorder.

We all continued the meeting assuming that this test will come back negative. We talked about our distance from home, the fact that Brittany is leaving in three weeks, and all of the other abnormalities regarding our situation. Basically, Gaines will continue the current treatment of CPAP and some diuretics for the next three weeks. At the end of these three weeks we will have a better idea of how much longer Gaines will be in the hospital and can discuss our options. Our options being either staying at GWUH because the end of his stay is in sight or a transfer to a hospital back home in Alabama. At this time, we still do not know if our insurance company will even cover the cost of the transfer. We hope to know the answer to this question by next week.

Bottom line, we are going to stay the course of his current treatment for the next three weeks. Please pray that Gaines does not have the rare genetic disorder, that his lungs continue to grow and mature, and wisdom for Brittany and me as we continue to face very tough decisions.



Mandy said...

If you find that your insurance won't cover the transfer (which I would think they should!) then ask the hospital about things like "Angel Flight" and others that help get kids to hospitals long ways away.
Praying for all of you!

Heather Marie said...

Praying you all whole and Ohio...

Stephanie said...

Praying for Gaines and all of you during this time! Praying he doesn't have the genetic disorder and his lungs start maturing soon. Hang in there...he's come a long way even if somedays it doesn't feel that way.

Grammy Jane said...

I'm praying for all four of you. I appreciate the specific prayer requests. This helps me know exactly what to ask our Father for. Praying for a peaceful weekend for you.

Amy said...

Still praying for your family to come home together and healthy in 3 short weeks. I feel God pushing me to share a medical piece of information. I don't know why, but I have fought it for weeks now thinking that surely your doctors have thought to try this, but since I haven't seen specific mention, I thought I would listen to God and share. At the NICU where I work, we use a device called Vapotherm. It looks much like a cannula, but operates more like CPAP. It can provide him the same pressure he is used to while making him a little more comfortable to learn to eat. We have many babies use this straight off of the ventilator that stay on for very long periods of time for those with very immature lungs. Just a thought...will continue to pray!