Good News and Bad News

              The last few days have seemed SO SLOW while we have waited to solidify details of Flint’s surgery.  Last Friday, our doctors here sent Dr. Weprin (Dallas neurosurgeon) copies of the MRI they did after Flint was born.  Then Flint hit the all-important 2 kilo weight mark on Monday night (YAY Flint!), so we hoped we’d be on our way to Dallas Tuesday morning.  However, we still hadn’t heard the final word from Dr. Weprin on whether or not all other systems were ready to go.  After a slight run-around our doctor here finally learned yesterday that Dr. Weprin hadn’t received the MRI that was supposed to have been sent to him 5 days previous.  Bad news!  UGH!  Enough of this waiting agony!  Apparently the neonatologist gave the people in the radiology department quite the chewing out for not getting the records sent.  As our nurse said, “He’s pretty laid back, until someone messes with one of his babies!”  I’m glad to know he’s so protective!  These little ones need someone to fight for them sometimes, and I’m glad our doctor here is doing all he can to do just that.  So, the MRI has now been overnighted to Dr. Weprin, who SHOULD have received it today.  Hopefully we’ll get some kind of confirmation that all things are good to go soon and then we’ll really be on our way to Dallas (we hope).

                Waiting for the surgery to happen finally took longer than we had available to wait, given Flint’s head size.  It has increased dramatically over the last week and is causing him discomfort, plus it is causing the Bradys I talked about in my last post.  They finally decided to do a spinal tap to relieve some of the pressure and give my poor little Flint a break after a rough couple of days.  They basically just gave him a shot in his back and sucked out some of the extra spinal fluid.  This is by no means a permanent procedure, but it buys us some time to work out logistics and get everything squared away in Dallas.  Most importantly, it relieves some of the discomfort and pressure Flint has been feeling over the last couple of days.  He’s been kind of fussy lately because of all this, but today when I saw him at touch time, he laid in his isolette and just stared calmly at me while I touched his head and talked to him.  He didn’t cry or fuss at all, and I was happy to know that he seemed very content.  YAY for a little relief for my little warrior!  Good news!

                When I went to see him yesterday, I immediately noticed he was wearing CLOTHES!  He has always only worn a diaper, but as of yesterday he was officially holding his temperature on his own so they moved him into clothes.  Good news – YAY!  While I was standing next to him, totally caught up in the fact that he was wearing clothes, the nurse walked up and said “I guess you noticed we had to put him back on a little oxygen.”  Bad news!   Actually, I was so distracted by the clothes he was wearing that I hadn’t even noticed the nasal candela until she pointed it out to me – I know, I’m a dork!  He had been having so many Bradys that they felt he needed to be back on a little oxygen (she kept calling it a whiff).  This has helped tremendously, and he’s hardly had any more “events” since then.  Again though, hopefully getting the shunt will help with this situation.  We are basically just in a holding pattern, waiting on the surgery.  We’ve had to stop bottle feeds and are just trying to keep him comfortable and gaining weight.

                One final bit of good news is that we FINALLY got the insurance squared away as far as the life-flight to Dallas.  I called my insurance over a month ago to find out how life-flight worked, since I knew it was going to be needed.  They told me that any type of ambulatory service would be billed as out-of-network, which basically meant I would be left with a huge bill.  The lady at my insurance even told me that usually those flights run from $80,000 to $100,000, and the life flight company would bill that directly to me and we’d be stuck paying it all.  I have been SO worried about this issue since I first discussed it with my insurance!  I just could not comprehend how they couldn’t cover it.  The doctor in Dallas had told me not to worry about it and that insurance always takes care of this issue.  But when the insurance company is telling you one story and the doctor is telling you the opposite story, it’s hard to sort out who is right!  Thank goodness for the social worker at the hospital though!  She got on the phone with my insurance yesterday, and together she and our insurance determined that since Flint needs the procedure and his medical needs make flying him (instead of driving) a necessity, the whole flight is covered!  REALLY GOOD NEWS!  I’m still not sure why my insurance used such scare tactics on me.  It’s not like this shunt is an optional cosmetic surgery!  Why not just tell me the facts from the start, instead of making me worry about that on top of all the other things I’ve worried about for the last 4 months?!  At any rate, we are relieved to find out that this flight will be covered the same way as all the other bills we’ll be getting.  Thank goodness for savings and insurance!  Together, those two things will make this all manageable, instead of devastating!

                That’s it for now.  I’m REALLY hoping that a definite plan will be figured out tomorrow.  I promise to update once I know all the details.  Thanks again for all the prayers, love, service, and support.  They are felt in tangible ways!