Improving

Today we seen much improvement in James' condition and personality. He is playing as actively as he can sitting in a chair or bed, talks much more and seems much more content. He is more comfortable around the nurses, even reminding them when they have done something out of routine (like not taken his blood pressure, by putting his leg up and pointing). He still struggles to stand, his legs are wobbly and unstable. Right now he is hooked up to so many things that we can't put him on the floor to give him solid ground to try regain this strength, so the only time he stands is briefly in his crib if we are changing him or picking him up. He has also shown some interest in food, although not eating excessive amounts, more just asking to eat ... could just be for entertainment purposes too, since there's only so much a child can do with limited toys and room to move.

Here's a picture of what ideally you would like to see the monitor looking like ... the best part being that this is James monitor!! This is great, except it only does this when he sleeps, once away it struggles with normal levels. The top number shows his heart rate and it's sitting right where it should be, when awake he's often around 140-160. This is within the alarm rates (alarm goes at 180) but still higher then they'd like to see it.. The 2nd number shows his breaths per minute (bpm). This is definitely a good number for James, who breathes higher then that when "healthy". This number has been sitting in the 70-80's, fluctuating up into the 90-115 area, whereas it should always be around 40 (alarm goes at 80) . Today we began to see where it would drop more often into the 30-40 area, although still reading mostly 60-80 seeing it drop more often shows improvement. The last number is the oxygen levels (SATs) and you can't get any better then 100%. We were thankful today to see that he held in the 97-100% more of the day. They weaned down the amount of oxygen twice today and now he's on the bare minimum, the next step is removing it. After the last weaning his levels dropped back into the 93-96% ... so maybe by tomorrow he'll have picked up again and be ready to go on his own ... we're hoping, but not completely counting on it since we've seen his levels dropped back into the high 80's whenever the nose prongs have accidently been knocked out. (Alarm goes when below 90.)Whatever the case he has improved greatly!!

The Echo(cardiogram) came back showing everything to be fine. We pretty much expected this since he has had an Echo before. The Echo looks mostly at the structure of the heart. An ECG has also been ordered and was suppose to be done yesterday. Since the Echo came back fine they put it on hold until Monday. We would rather have seen it done when his heart is actually showing it is stressed ... but it's the weekend and that's the way things go on the weekend. While the Echo looks more at the structure of the heart the ECG is used to measure the electrical activity of the heart. It looks at the rate and regularity of heartbeats as well as the size and position of the chambers and the presence of any damage to the heart. It seems when James' breathing goes out there are often questions about his heart as well ... obviously the heart has to work harder when under stress, but they keep seeming to question whether there is more to the situation, so it will be good to have this aspect evaluated as well.

This shows the full face BiPAP that James had on in ICU when he refused to keep the nose BiPAP on the second time they had to put it on (after their attempt to take it off which only lasted 5 minutes). This one actually seemed more comfortable the just the nose type as it wasn't on as tight, either way he still didn't like it ... do you blame him? As you can see I'm holding his hand and Teddy is underneath ... in ICU we either did this or he sat on our lap, but he had to always have contact with us and with Teddy.

The BiPAP is off and the nose prongs in. Such a sad face, breaks my heart just looking at it ... so glad he's looking so much happier now. His puffy round faces comes from extra steroids that they had to give him when he came into ICU. Since he's on prednisone his body isn't able to produce the necessary steroids to handle stress and so they had to give him extra hydrocortisone steroids for a few days to help him through the worse. Just like the prednisone this steroid also has the "round face" syndrome ... only worse, likely due to the higher dose.

Today ... looking more awake and alert, playing with his toys, sitting on his own without pillow support. Definitely improving!!