2/9 - Continued Progress

Over the weekend, Leo has continued to make progress across the board. Kate and I put a lot of jargon in the blog that I am not even sure we understand sometimes so a different way to look at his progress is that Leo had a total of 7 IV pumps when he arrived on Thursday to give him various types of medicines and fluids and now he is down to just 3.

He started getting fed through his G-tube on Saturday and now has progressed to full feeds through his stomach and no more through an IV. While the feeds are continuous feeds on a pump, they are still full feeds so I consider that a win. If he tolerates the continuous feeds well for the next 24 hours, he will move to bolus (all at once) feeds sometime Monday.

In terms of his blood clot, Leo has a pulse back in his leg so his blood clot appears to be progressing in the right direction. The doctors have taken him off the blood thinner heparin and put him back on lovenox which is less invasive to monitor. When Leo gets to go home, he will have to continue to get shots of lovenox every 12 hours for about 5 weeks. I am not a big fan of needles so looks like I will have to soon get over that fear.

His ventilator settings continue to be reduced on a planned schedule and he is at the point where he is breathing above the machine. Early Monday morning is when he is expected to at the lowest ventilator settings and at that time, hopefully he will come off the ventilator. Some of the doctors have brought up the idea of a Tracheostomy to help Leo with any airway blockages and any fluids that may enter his airway. Kate and I are not supportive of this and think it is too soon to jump to that conclusion. While we understand the certainty of what a Tracheostomy would help with, we have seen Leo make progress over the past 5 weeks that give us hope that he can continue to grow and developed without it. I expect Monday to bring a great deal of dialogue on this topic with the doctors.

So Monday is shaping up to be big day; may come off the ventilator, may be on full feeds, and hopefully won't have a tracheostomy.

Kate was able to finally go home on Saturday and get some rest while I stayed with Leo on Saturday night. Since he is sleeping a lot, I have had some down time to get caught up on stuff for home like paying bills. I can't be thankful enough for insurance and the company that I work for. Here it comes.......for just 2013, our total billable amount was $578,000. Yeah, I can't even wrap my head around that amount. After discounts and other medical billing jargon, I don't think our insurance had to pay that amount but still, a lot of money.

Don't worry about us, we are fine. Our maximum out of pocket is very manageable and a small fraction of that amount. I am only sharing this because some have asked us about it and to offer help should you ever need help navigating medical coverage and bills. Kate and I are becoming very knowledgeable about it.  I am not big into politics and I haven't really paid much attention to Obamacare before Leo was born but for us, it has helped significantly by removing the maximum lifetime benefit. Our max lifetime benefit was $2 million and Leo would have already consumed a 1/4 it.

I know everyone likes to see pictures on this blog. Here is a picture that I took last Saturday morning when Sammie and Leo were both watching cartoons. Even though it has only been a few days and I want nothing more than for Leo to be healthy, I do look forward to our weekends being more like this again.