Happy Mother's Day

Happy Mother's Day to all the incredible woman who are blessed to be called Mom. I am lucky in that I had a the smartest, strongest, most loving woman to guide me and teach me. Mom- you have taught me more then anyone in this world. You have been with through each stage of my life to encourage me and love me. I turn to you in my happiest moments and my darkest hours knowing and trusting that you will be there to share the laughter and the tears. I love you!

I was the first one up this morning. But once Buggy and Bruce woke up, I was ordered back into bed, bc I needed princess beauty sleep. I read for a while and my boys brought me breakfast in bed. Then I went for a run and got to play some board games with Bug and Bruce. Now we are just going to enjoy a quiet afternoon. The best kind!

A quick recap of the past few days and our trip to the ER....About 3 weeks ago we stopped giving Alex IV fluids each night as we have done for years.( Because we drain Alex's stomach 24 hours a day he loses a lot of fluids and we have replaced those with IV fluids. ) The reason for this change is to be able to de-access his port which allows him to live more normally and also lowers his risk of acquiring another line infection which is what made him critical in December. The doctors and I knew there were risks instopping the replacement, but the doctors felt like the benefits are great enough that we need to give it a shot. Over the past few weeks, we have watched his labs closely as they showed changes you would expect to see in someone becoming dehydrated. However, Alex was still acting and feeling ok so we marched on. On Wednesday, we realized his potassium was becoming too low and we were going to have to supplement. GI is working on a prescription that our pharmacist can make/Alex can tolerate. In the meantime, his Potassium continued to fall and Alex became lethargic and wasn't feeling well. On Friday morning, we ran labs that showed that his potassium was too low to wait any longer. The discussion ensued about whetehr to go to the local ER or trek to Houston for something relatively simple. Dr. K and I talked quite a bit about both options and ultimately Bruce and I decided it would be "easier" to just go where they know us and Alex is comfortable. (He gets really nervous in other hospitals that they will do something wrong or give him something he is allergic to). So Alex and I packed up quickly (Thanks to Theresa who has become our master packer) to get on the road. We arrived at the ER in Houston around 10:30 Friday night. Alex got his first Potassium runner overnight and we thought we would be on our way however the ensuing lab showed that his potassium had hardly come up. They talked to both Dr. K and Dr. Navarro (Alex's GI). It was decided they need to give a second runner with a higher dose and a bolus of fluids. That worked and we were on our way around noon yesterday! I spoke to Dr. K for quite a while yesterday about what is going on and the plan (which we really hope will work). Alex is feeling better once again. We will run labs again tomorrow and hope they are stable. Thank you to everyone who prayed for us and checked on us over the last few days.

Finally, I got some pics from our trip last month to San Antonio. Alex and his best buddy/Lauren had so much fun.

Ali