Thursday, April 13, 2006


It's been a long couple of days. I seriously thought that yesterday would be the day that we would have to make some heartbreaking decisions regarding Drew. I still can't shake the feeling that we might have to fairly soon but things are on hold for now. I hope that's just the pessimist in me coming through.

I don't feel like going into great detail about what happened right now. The basic thing is that he desated very badly (as in a 60-70/30 split) for a prolonged period of time--approximately 2-2.5 hours for the pre-ductal numbers, longer for the post-ductal. His body and organs were not getting a lot of oxygen. They drained about 150 cc's off of his heart and left lung which increased his post-ductal sats to the 60s.

Messing with the vent settings, they were able to get his numbers back into the 80s and 90s and get his blood gasses looking better. Who knew we'd be cheering a carbon dioxide level of 82?! As a nurse told us, it's all relative; a week ago we'd be freaking out at that number, now we love it. He has gotten back down into the high 40s for that level as of this morning. The bad thing about having his vent settings so high (or low in the case of the oscillator--they are using it in the opposite way a conventional vent works for some things, it's very confusing) is that there is no "wiggle room." At least he's pink instead of blue/gray now.

They have stopped the viagra and started flolan, another drug to expand his arteries. It's an adult medication to treat PPHN (pulmonary hypertension) and has never been used on an infant at OU Children's, Drew is the first. Either it's working or his body has corrected the slight PPHN he was showing signs of.

His cultures have still not grown any infection. His white blood cell count has been all over the place--elevated on Tuesday, low yesterday, elevated again today. No fever but yesterday's nurse said that's not exactly indicative that he's not fighting an infection. All of the "rules" go out the window with critically ill infants.

There are signs of a colonization of pseudomonas around his vent tubes. It's a bacteria that seems to be resistant to many antibiotics however, his is not a full blown infection yet. He has been on preventative antibiotics and now antibiotics specific to the pseudomonas. Don't do what I did and read up on it online; I just managed to freak myself out on studies that are outdated and that deal with full blown infections. This bacteria does affect the respiratory system in immunosupressed people and those with chronic lung conditions (such as cystic fibrosis). Drew meets both criteria, lucky guy.

I don't know how we could get through this without all of the help we've received from the grandparents. All four have been a godsend; helping out for extended periods of time and coming on short notice. We lasted Sunday night through yesterday morning without help. We were able to stay at the hospital all afternoon because of the arrival of a grandmother to stay with Elizabeth.

All of his machines and his numbers as he was recovering yesterday morning:

Comparison of his color from yesterday morning to yesterday afternoon. It's difficult to see just how blue he was since I don't use the flash on the camera.

I held Drew up and turned him over last night while the nurse held his tubes. The pictures are fuzzy and I look horrible (I have an excuse) but here they are:

And this morning:

At 5 weeks and 1 day (today), Drew weighs 14 lbs. 1 oz., some of it fluid but he's by far the largest baby in the NICU. His roommate weighs less than 2 lbs.


Karen (Breath of Hope) said...

HI Jana,

I know you don't know me but I have been following Drews blog and get to it through Catherines (baby Sophia's) blog. My heart aches for you all so much. My duaghter also received Flolan back in 2002. First inhaled (never saw so many Dr.s trying to calculate how much to give a baby) and then inhaled through her ventilator. Her pre and post ducts went back up into the 90's. She was also the first baby at Willford Hall to recieve Flolan. I really think it may have helped but the next morning her endo tube got clogged and she desated when they re-intubated her it was downhill from then on. They had told me after her repair that she would be real touchy and if anything happened it might put her over the edge and that clogging did. I am so hopeful that Drew getting Flolan will help stop the hypertension. I know that is what his body needs to allow his heart and lungs to get things under control. You and your family are always in my prayers. Keep fighting Drew!!!

Emma said...

Oh Jana, how cool you got to briefly hold him, and he's certainly gaining weight well. I'm still praying at every given moment for him, he's just precious!

Kellie said...


Congrats on getting to hold your precious Drew. I know that feeling all too well and even if it's just a slight lift for a bed change, it's amazing! I just wanted to tell you that we have been and will continue to keep Drew and your family in our prayers. You are staying strong throughout all of this (even if it doesn't feel that way inside most of the time). Drew's pics from this morning look much better than yesterday. He's definately not cyanotic anymore. Carson and Eli want to tell Drew to keep up his sats and keep getting big and adorable. Eli wants to meet another little miracle baby (he's jealous though b/c Drew is only 13oz shy of being the same weight as Eli!!). I will pray that God is watching over and protecting Drew.

Kellie (Carson and Eli)

Shawna said...

That is GREAT that you got to briefly hold Drew!! He does look so much better now, I can definately tell a difference in his color! He is such a precious baby, I'm sorry things have gotten rough again but please know that we are all still praying hard and love you all dearly. (((HUGS)))