I apologize to those of you who have been checking back for a new update. Most likely with me no news is good news. Or at least no new bad news!
And that is the case now.....
we are still here at 'The Hotel on the Hill' with nothing new or nothing worsening. Mason's belly bubbles, known as pneumatosis, or slowly getting better. Those little bubbles are just taking their own sweet time to go away! The docs had told me it can be 14+ days to clear up completely, with the best case scenario being 7 days. I've just been hoping for the best! Do you blame me though???! We've spent enough time away from home this year! I am so grateful for his new happy healthy heart, but I'll admit.....this immuno-suppresion is tough. It WILL get better and easier!
Mason is on day 9 of being NPO (no food or drink by mouth or g-tube), but he is drinking a little water and chewing his favorite ice. He is still on TPN (IV nutrition)and IV antibiotics. The GI docs want to keep him NPO and on his IV's until all the pneumatosis is gone on his x-ray. Yesterday's x-ray was much much better, but not completely clear of the bubbles. Today Mason had a break from the x-rays and will get another one tomorrow. I'm hoping and praying for a totally clear x-ray tomorrow. Even though we do love the staff here at The Hotel, we do want to go home!!!
Mason also had his monthly IVIg infusion yesterday to get that done with while he's already an inpatient. It was scheduled for this Thursday.
All the above being said, you can see I'm not getting us out of here in time for my kiddos 1st day of school tomorrow. But w/ the help of Grandma I'm going to sneak away in a little while this afternoon so I can go to "Back to School Night" with my other kids and w/ the help of Daddy I may sneak away early in the morning to help send them off for their first day of school.
Thank you for your continued love, concern, and prayers.