..............that ice chips would make a 2 year old sooooooo happy?
Mason has been a very happy boy today, because I've been feeding him ice chips all day. Not ice cream, candy, pop, or fruit snacks but ice chips is all it takes to cheer up sweet little Miracle Mason!!! Someday soon, hopefully Mason will get his appetite back (that he lost last August) and he'll be excited for a yummy milkshake instead. Our nurse was able to bribe him with ice so that I could go outside and eat some lunch in the sunshine. It has been a beautiful day here today.
When I turned my back on Mason to grab the camera, he excitedly grabbed the cup of ice and then spilled it all over himself! Woops!
In the next day or two the docs want an ENT specialist to do a scope (take pictures) of Mason's vocal chords to make sure all is well before we offer him water or any other thin liquids. Sometimes from being on the ventilator or having heart surgery vocal chords can be temporarily damaged, which can increase the risk of aspiration. We were letting Mason drink water the week following transplant, but it would cause him to cough quite frequently. And, after 10 days of being off the ventilator post transplant surgery he still had a very weak voice. So this time after being off the ventilator the docs want to be more cautious, because the coughing with drinks of water and a weak voice are both signs of possible vocal cord problems.
Today Mason's chest x-ray showed that the left lung effusion is almost all cleared up! Fabulous news!! We are so excited!! Because it is Sunday, the chest tubes didn't get pulled by the surgical team yet. I guess it is not a 'Sunday Priority", but most likely he'll get them out tomorrow. Since both lungs look good now, he'll go to normal nasal O2 tomorrow and then our goal is .........in a day or 2 back to room air again!
Mason has been getting slow continuous G-tube feeds through out this rejection episode, but tomorrow we will try bolus feeds again (his normal routine of a 3 oz's of his high calorie formula every 3 hours.) We had been doing this prior to knowing about the rejection, but he was having trouble keeping that and all his meds down. Hopefully he'll be able to handle it better now.
Mason has had his nights and days mixed up this last week. Last night I think he slept 3 hours total! He was tired out from his 'all night party' and took a 9am cat nap today. Here's my sleeping superstar hero:
So far, day 3 of Round II of Mason anti-rejection treatment has gone well. I'm so glad he and his heart continue to tolerate this nasty rejection!
I'm grateful for prayers, fast, and special blessings that continue to carry us forward in our journey. I'm grateful for kind gifts, cards, e-mails, text messages, lunches and dinners (from church members here in Pal Alto), meals for my family at home, help w/ laundry at home, and much much more. How could I do this with out you? It would be very very difficult!! Love and gratitude to all of you!!!