1/8/2010

sorry, i forgot to take my camera to the hospital, so no pictures with this update! i know, i know, blogs are always better with pictures... but i'm hoping an update will suffice... if not, too bad, that's all i've got for today.

Malachi had a very rough night. He kept throwing everyone for a loop and desated into the teens on at least two occasions. Since surgery, most of his electrolytes have been low. They are checked every two hours. He has been given additional supplementation of potassium and magnesium, and he has also been receiving calcium basically every two hours because it is low. Calcium, I'm told, is essential for heart function. His heart rate and rhythm are still consistently inconsistent. Thankfully, being in the PICU, there is a pediatric cardiologist on floor all night. He was constantly in and out of Malachi's room monitoring him while I was there this evening. Before surgery Malachi had been at 20 ppm and 100% oxygen support for roughly two weeks and seemingly unweanable. The good news is that he has already been weaned down to 10 ppm (parts per million) on his nitric oxide and 55% on his oxygen support. Obviously the additional pulmonary blood flow through that second shunt is helping! The goal is to have his nitric weaned by tomorrow and be back to the NICU by Monday. He is getting food around the clock, but extremely slowly. He is receiving his formula at a rate of 5 ml per hour, this equates to about 1 ounce every six hours. Prior to surgery he had been receiving 77 ml every three hours with feedings extended over 90 minutes. He also has an NG tube now (going through his nose to his stomach) instead of the OG tube (going through his mouth to his stomach) for feeds and oral medications. He received some blood last night, I assume due to low hematocrit levels (necessary for oxygen to be carried throughout the body). All in all, he has had a good day and hopefully will have a seemingly uneventful rest of the night. His heart rhythm issues to this point have stumped this cardiology team, too. Pray that a fresh look at his heart will bring some new light to the situation. It would be great if SOMEONE could figure him out!

During the 5 or 6 hours I was at the hospital this evening, he woke up on two separate occasions--as I was about to step out to get a bite to eat and as I was getting ready to leave. Naturally, I had to wait until he was back asleep to do either of those two things. I really wish I knew how much vision he had with his right eye. When he opens his eyes, he seems to almost do a quick scan from right to left with his eye to see what's in his visual field before trying to focus in on something. With his coloboma being on the optic disk, I'm not sure how fuzzy his images are or how many blind spots he may have. Only time will tell.

Once again, I have renewed strength and hope for my little boy. Thank you so much for your prayer and words of encouragement. We trust that God will do great things through Malachi Stephen, which means "crowned messenger of God." Interestingly enough, we didn't know that's was the meaning of his name until just before he was born. I think it fits, don't you?