2 Steps Forward...2 Steps Back

The hours here are an unbelievable emotional roller coaster. It's difficult to put into words. We cling to every ounce of hope and at the same time feel such hopelessness. It was another rough day for Noah, starting during the night. He spiked another fever, his heartrate was sky high, his gases began looking worse again, and his CO2 levels just continued to rise. His pressures on the oscillator had to be increased again. So the doctor decided to try a position change and put Noah on his stomach. For those of you who know Noah well, you know how much he absolutely detests his tummy time!! Well, I guess he just needs a little sedation to tolerate it, because his CO2 began to go down, and his vitals began to settle out again. We were able to go back down a small amount on the settings but he is still higher than yesterday. So he spent his day on his tummy! At 6pm we tried to turn him on his back and sure enough, his CO2 levels began to rise again. So back on his tummy he went for tonight! We also had to double the amount of Morphine and Medazalam he is getting to get him more comfortable again, and he also gets a bolus of Lorazepam before position changes. I think we now finally have a better handle on his comfort level.

Noah also recieved another blood transfusion today as his hemoglobin had dropped again. His color is much improved this evening. And he is still a little platelet eater. He recieved 2 units of platelets this morning and another 2 units this evening. Our doctor is suspecting that he has developed antibodies to the platelets, but we are still waiting for results from the blood services lab to confirm this. If this is the case, then they can look for donors to match him and that should help his body hold on to the platelets. (Thanks Anne for that comment. It was exactly what we had been discussing today and I do hope that this is the answer).

Blood cultures from yesterday have also come back growing 2 NEW bugs!! A new gram positive and now a gram negative. The lab hasn't confirmed exactly what type yet, but we have added even more antibiotic coverage. Not sure there is much else he could grow at this point! The good news is that we are no longer getting positive cultures for yeast, so it must finally be under control with the antifungals.

Praying for a better night. Please also pray for Kailyn & Joshua who understand so much more than we give them credit for and are having a difficult time as well. Noah continues to fight, and as long as he does, we will fight too.

"The Lord is close to the brokenhearted and saves those who are crushed in spirit."

Psalm 34:18