Lucky #13

Kale had a pretty stable day today! He stayed on the Drager vent all day, which is a full 24 hours! The Drs. are leaning toward putting him back on the high frequency vent that he was on first because his blood gases haven't been stable throughout the day today. Derc and I anticipate him being back on it at some point tonight or tomorrow. Although, we thought that we would walk in and see him on that today, and Kale did what he does best and surprised his parents!

Kale's infection is back :( Which means that it may not have ever gone away in the first place. They put him back on an antibiotic to fight the infection, hopefully it works quickly! Poor guy just has so much going on, it is torture for us to see him constantly fighting so many things, but he never ceases to amaze us in how much he can fight.

The Drs. increased his feedings today to 4 mls every 3 hours! That's right, he has officially passed ONE ounce per 24 hour period! Seems like his eating habits take after both Derc and I.

The Dr. said that they decided to repeat Kale's brain scan in two weeks, so he will have another on June 7th. In between now and then we want Kale to just focus on getting bigger and stronger.

The Drs. had to remove Kale's ART line as they only last a few days and it was starting to not work very efficiently. This means that every time they need to draw blood (which they do anywhere from 5-10 times per day I would say) they have to poke his heel. Since he has a PIC line in one of his heels, they can only use his right heel. His poor foot is all swollen and purple because it has already been poked so many times!!

Derc and I are so impressed with our little guy, he continues to surprise us each day and fights so hard for the smallest achievements. We love praising him and telling him how proud we are, we know he has a long road a head, but we feel better as each day passes that he is up for the fight, and we've definitely got his back :)

I had my 2 week follow up appointment today which was fairly uneventful. The Dr. gave me some information on Kale's third degree heart block. Unfortunately, our talk didn't give me awesome news. She said that with people that have this SSA antibody, about 2% of these babies can develop this third degree heart block. Two percent!! Seriously?! This corresponds to 1 in every 15,000-22,000 pregnancies (or something like that), which may explain why she had never seen one before. Oh well, nothing we can do now, but it's good to know for the future. The good news...my lifting restriction is up to 25 pounds now, so my mom is off purse and bag duty :) Except, she probably will continue to not let me carry anything or drive, she says I'm her worst patient since I always try to break the rules, ha! Thanks for all your help these past two weeks, Mom!

Signing off for the night, thanks for keeping Kale in your thoughts and prayers! We're hoping our little man's infection goes away and his blood gases stabilize so he can stay on this vent!