16 Apr Liver Biopsy Tomorrow
Keegan’s labs were redrawn this morning, and he is scheduled for a liver biopsy and changing of his g-tube tomorrow at 1pm. Both of these procedures will be done in Interventional Radiology and will require general anesthesia and an overnight admittance for observation. His liver function numbers were a little better today but still very abnormal. The doctors conferenced with us this afternoon, and they felt that it was best to proceed with the liver biopsy considering Keegan’s history, his post-transplant status, and some of the clinical presentations. We fully agree with the doctors on this point. We understand that we may come away from this not knowing much more than when we went in, but the entire point of coming up here was to “cross the t’s and dot the i’s”. Additionally, everything in the “transplant world” is done more proactively than with otherwise healthy kids. Transplant kids can present with crazy symptoms for wierd infections and autoimmune processes, and what the doctors have learned through experience is that if you don’t follow through with appropriate testing, it can be too late by the time the “normal” symptoms appear. We certainly don’t want to put Keegan in any greater risk of rejecting his heart or going into other organ failures. Lastly, we feel that the previous liver biopsy done at home was not analyzed completely, and the doctors think that there was a legitimate reason to look into metabolic issues as a possible cause of his problems. This liver biopsy should give us enough tissue to evaluate with electron microscopy and freeze some for future testing if needed.
The procedure is scheduled for 1pm. We have to be at the hospital at 11:30am, and we should be in his room by around 3pm. We are anticipating being back on 9South for this admittance. I didn’t get a chance to ask today if they thought there would be any preliminary results back over the weekend, but I doubt it. Assuming Keegan is doing ok on Saturday morning, we should be discharged by lunchtime. Please, please pray that this is the case and that Keegan doesn’t overstay his welcome this time! He continues to have a rash on his torso that won’t go away, and the red bags around his eyes are back. Yesterday, he threw up after waking from his nap and seemed to be in a good amount of pain for awhile. He eventually got back to his normal self after two hours, so the doctors didn’t make me bring him in. Let’s hope it was just a random incident and not a precursor to something more. Please pray for that also!
Mamie made it back home safely last night, and Gray got here before bedtime. Keegan was ecstatic to see his Daddy and was doing his little happy dance for him (I have to get a video of this for y’all to see!). This morning after labs, we went down the street from the hospital to a really nice playground and enjoyed the sunshine. Keegan thinks he’s much more stable than he is on his feet and took a header on the playset, gonna have a pretty good knot from that one. We posted a few PICTURES from our last day with Mamie at the Boston Common Tadpole playground and Make Way for Ducklings statue in the Public Garden. Be sure to check them out!
Thank you all for your response to our previous posts. It is nice to hear from y’all and know that you are still praying hard for Keegan. Some days are worse than others, but 99% of the time, seeing that little boy’s smile is the only thing in the world that matters. We are so blessed to be able to share him with each of you and touched beyond words that you feel the same way. We’ll update again tomorrow after his procedure. Thank you, thank you, thank you for your support and love.
Maddie
p.s. I keep forgetting to post this. Keegan was featured in the press release for Children’s Medical Center’s opening of the Legacy campus across the street from our house in Plano. Check out the article HERE. (The photo is a different kid, obviously.)