01 Apr Update
Keegan had a much better report at clinic yesterday morning. His liver function was improving, his electrolyte levels were stable, his red and white counts looked great (for him), and one specific type of white cell that he has never, I repeat never, had normal levels of were NORMAL! The doctors think his improving blood counts are directly related to decreasing his immunosuppression levels, and I have to say, that is very difficult to argue with at this point. His hydration seems fine, considering the number of big ol’ crocodile tears he shed during the blood draw, which was ironically I think the fastest blood draw he’d ever had. The phlebotomist felt his vein once, stuck the needle in, got what she needed (2 full syringes), and got out in the blink of an eye. Gray and I looked at her and said, “what’s your name again?” We WILL be having her as our personal phlebotomist the rest of our time here!
Unfortunately, Keegan’s weight was down yet again. He has his breathing treatment scheduled for 7:30am on Thursday, and we will get a weight and more labs then. If his weight continues to go down, the doctors would like to try increasing the calories of his formula once more. He continues to have on average 5 or more stools a day, but they look so much better than before (what you wanted to know, I’m sure). Anyway, we’re encouraged that his bloodwork is stable and he appears to be properly hydrated. By the looks of it, he should be gaining weight based on his output, labs, and the amount of calories he is currently getting. We’re definitely for trying to increase his formula before TPN though. The doctors do not want to add any additional volume, as he is already pretty much maxed out where he is now. In fact, we may be able to start taking hours off of his feeds (meaning more time disconnected from his tube/pump) if he starts maintaining his weight or tolerates increased calories.
The best news of all at clinic was that if all goes well through next week and a last echo at the beginning of the following week, we should be able to go home!! That would be just about 3 weeks outpatient! YEAH FOR KEEGAN!! So obviously, this is our prayer request for now. We would love to have a relaxing rest of our time here with good reports, more improvement, and be home before the end of April….for GOOD.
Don’t forget to check out his picture and video site! There’s a video with an exciting development and more siteseeing pictures. We went to the New England Aquarium on Monday. Gray and I enjoyed it, but I think Keegan needs a few more months to really get it. Still, he is becoming more interested and less scared of other kids. In fact, most of the time was spent diverting him from touching other babies! We also visited Fanueil Hall in the pouring rain. That might have been more interesting had it not been so nasty outside. Yesterday afternoon, we chilled inside after spending most of the day at the hospital. Keegan really enjoyed sitting on the couch with Mama and Daddy watching Bolt! (Thanks, Denise!) We have to say that we enjoyed it too. If the rain stays away, we’re headed to the North End and Little Italy today.
Thank you so much for your continued prayers for Keegan. Once again, please keep little Miss Avery in your prayers too. She was admitted for blood transfusions again and really needs your prayers for her improved health. Thanks.