Monday, June 22, 2009


Sorry I haven't been able to update! Here it is! Things are ok. Could be better. We were due to come in this morning for a cytoxin infusion. Unfortunately, we came in last night because Gary had declined from Friday. Saturday morning I ran him to his regular pediatrician to have them check on this cough we have had for 2 weeks. He has a foul odor to his breath and SEVERE chapped lips. The pediatrician was a waste of time. She was not comfortable treating him. Sunday morning he had a full night sleep and was slow to walk. I didn't like it so I called. They said to come on down. We spent the day in the ER. They did chest xrays and blood work. I was told it was a very good thing I brought him in because his white blood count was HIGH 32,000 which indicates infection somewhere. We are in isolation and he is being treated with a broad spectrum antibiotic. He was not feeling good again this morning but is seems to be perking up through the day. Especially now that his Nannie Mimi is here. Nannie Alyssa sent us dinner! Yeah. Hospital cafeteria food, blah. Anyway, they aren't going to run the cytoxin until his white blood count comes back up. Hopefully Wednesday.

Another Issue

So the IV placement is getting tiresome. It has taken at least 4 to 5 times every time and then his veins blow. I spoke to the resident doctor about putting in a central or pik line. Everyone agreed it would be a good idea. It is a surgical procedure where they thread a catheter into a vein that goes to a big. (Something along those lines) Gary's doctor that matters said no to it though. She said she the risk of infection is not worth it. Now that we already have an unknown infection it would not be something she would like to see be done. Not sure what to think. I do respect her opinion though.

Gary's feeding tube is going fine. The xray showed that it had come out a little bit so we had to advance it a bit. He is no where near being cleared to eat. Love to all. I will update more later.


  1. Thanks for the updates! Is the rest of the family at home? Could I bring them a dinner or two to help out?

    Sending you loves

  2. I am so sorry to hear about the rough weekend. I am glad that you were on top of the game. We are praying for you to continue to have strength and for healing in Gary. Kya and Kaysa said a special prayer for Gary and his doctors last night. About the pik or central line I don't recommend because they are so sensitive and easily infected. However, Kya has had a port since January 27th. It was the best decision I ever made. Dr. P even asked us if we would be advocates to other JM families about doing this during the early onset of the disease. It has saved so much times, blown veins, and extreme trama. I would have done it 2 weeks earlier if I would have known how great it was going to be. Everything with a needle is done through the port and it cannot get infected and it is under the skin. Kya can swim and do anything she wants with it. They will leave it in as long as it is getting accessed at least every 6 months.

    I will continue to pray for you. Be a mama tiger and demand what you want and feel that Gary needs! I am here if you need anything!