Sunday, October 11, 2009

Update

***Keegan's email account is having some problems and will not send anything. We apologize for no "update emails", but we hope to have it fixed soon. Thank you for understanding.


First, let me apologize for not getting the update email out for my last post. I just realized that it is still sitting in my draft folder! Oops! So, just to recap - Keegan's been home since his transplant-aversary on 9-19. No further severe pain since we started him back on the abdominal migraine medication. This is going to be a relatively short post because Keegan has two big appointments with GI and immunology this week. So, I'll probably update again at the end of the week.

Things have been relatively quiet around here due to "winter lock-down". Keegan's labs looked pretty stable for him last week. That was stressful though since it took WAY too many tries to find a vein, which again brought up the possibility of needing a port again. If he had a port again, it could be used for IV access when he's inpatient or in the ER, leaving his peripheral veins in better shape for his blood draws. Of course, no decision has been made about that yet. It's a difficult decision - could be seen as unneccesary if he stays feeling ok, but you hate to need one and not have it when he's really sick.

Keegan has had quite a bit of difficulty processing his daytime tube feeds lately, and we're trying to make a decision about what to do from here. It's becoming a daily battle and makes him quite miserable. Our GI appointment tomorow should help. We will be discussing whether or not to go ahead and sink his tube lower into the intestines, bypassing the stomach. This is very common in kids like Keegan, and honestly, it's not hard to do since he already has a tube. The good things are it can be done in radiology without sedation, and it's there when we need it but doesn't have to be used if he doesn't. The only bad thing is that it's one more procedure/thing to have to worry about. Prayers for wisdom on this front would be much appreciated. It has been driving us all a bit crazy lately.

I would also like to ask tonight for prayers for three of our dear friends you have heard of a few times. Nate received his angel lungs on Keegan's transplant annivesary. Things were going pretty well for him until he developed a clot which blocked blood flow to his new left lung. Unfortunately, Friday they had to remove the left lung. He is doing better now, although he will be medically sedated at least for a few more days. Please pray that this is the last mountain little Nate has to climb and for his continued improvement. Also, Miss Hannah was admitted back at Children's last week for what was initially thought to be another rejection episode. Praise God, it was not her heart at all! Her little kidneys had been stressed out and shut down. It scared everyone for a few days, but she is now on the floor and hoping to go home soon without having needed any invasive procedures. Lastly, please continue to pray for little Miss Avery. Her family is waiting on some more testing of her blood to give them a better idea of how her bone marrow is functioning. It is an extremely trying episode for them, and they are very anxious to know what they can and what it might mean. Please pray for the peace of the Lord to comfort them and for their rest to come from continuing to fully trusting in His ways as they always do.

That's about all for now. We'll update by the end of the week with any new information, and hopefully we'll have some new pictures soon. Also, we are still working on getting a new site/blog started for Keegan, as our time being supported on the COTA platform is running out. If you know of anyone in web design that might be willing to donate their time/effort to getting it set up, please let us know. Thanks so much. Have a wonderful week.