Sunday, February 10, 2008

Rough Day

We are told to expect a very rocky road, but it's tough when we thought we had made a bit a progress yesterday to have a day like today. This morning Noah's blood gases started going downhill again and we were forced to go back up on his oscillator settings. It was discouraging and frightening to see how critical his condition is and how quickly it changes hour by hour. Just when we think we have a moment to breathe, things change again.

We have had to increase his sedation to a combination of Morphine and Medazalam because his blood pressure and heart rate would go sky high whenever he was touched. So the Fentanyl just wasn't enough to keep him comfortable. And we are having alot of problems with Noah's platelets as well. He recieved another 3 platelet transfusions today and they are being used up almost as fast as we can give them. He's been having a fair amount of bleeding from his mouth and nose. His hemoglobin was down to 70 today as well, so he also recieved a unit of blood. We also had to put him back on a continuous insulin infusion because his sugars have been skyrocketing. He is even more swollen today but we have started Lasix which is helping his kidneys get rid of some extra fluid. The good news for today...since his old line was removed, Noah remains fever free for the first day in 2 weeks! We drew new blood cultures this evening from the new line and from his arterial line so we will wait to see if they grow anything.

This evening things are more settled again and I think I should be able to get a few hours of sleep. Thank you so much for all the support and prayers.


Hailey Lee said...


verna said...

May the peace that passes all understanding gaurd you, still praying .

Kia said...

You are all in my prayers.

Jamie said...

We're thinking of you guys lots!

Anne - Zach and Sam's mom said...

Nichole, this is anne from tpn list. please know i have been keeping up on noah via your blog and my heart and prayers are with you often. although our experiences are never quite the same, they can be similar and so know that i do understand that indescribable feeling when they are trying to ventilate your child and the sats are not moving and then just when you think "this is it", your child responds...and then the up and down...and how that makes you feel like the entire world has tipped off its axis.

all you can do is take it a moment at a time, which is terribly hard i know. draw strength from your God, your family, friends and those of us who care deeply despite having never met Noah or you. When you feel tired and can no longer think a clear thought know that others are praying, hoping and caring for Noah, you, the family and your health care team.

I do just want to mention one medical thing - please forgive me if it is not applicable to Noah. I know that sometimes it is so tiresome to get medical advice from people who don't know your child. There came a day when my little Sam did not stop bleeding no matter how many platelets we gave him. The numbers would either drop or stay very low. He had only had a few doses of platelets when this happenned but someone, wanting to cover all bases, decided to test him for antibodies despite it being unlikely that a child his age who had so few plt doses would develop significant levels of antibodies. The test came back that night that he was reactive against 93 percent of the population's platelets. Once they found donors exactly matched 6/6 for him, he got at least a small bump with each plt dose (about 30-40)

Anonymous said...

Hi Nichole,
Thank you for taking the time to write updates. I have nothing encouraging to say, but I think of you and your family often.

Love & prayers, Jolene Allen

Donna said...

know that we are keeping Noah in our prayers. Praying that Noah has a quiet night and he starts improving.

Anonymous said...

Thanks for the constant updates. Our prayer is that you will continue to believe that he can be healed.