Happy Valentine’s Day from Augustus the Mighty and Ladybug Audrey.
Good news- WE ARE GOING HOME TOMORROW! Yay! Gus is doing great and we can’t wait to get home!
Counts started jumping up over the weekend and are quickly inching their way higher every day. This means that Gus’s body can now start to heal itself and hopefully we are through the worst of it. It seemed like an eternity last week. I must say that other than getting through Gus’s tumor resection, last week was the hardest week for me in Gus’s treatment. Even though he was sleeping all the time, I was constantly busy taking care of him.
His skin has almost completely healed. He still has places that are peeling, but no more pain from that. His mucositis got so much worse after my last post, but once his counts started coming up we immediately noticed improvement. I always thought that in rounds before that the mucositis he got was bad. I was very mistaken. His mouth and throat hurt so bad he was crying with his mouth closed. He barely spoke last week. My heart broke every time he cried. Poor kid was throwing up giant stomach-fulls of mucous and it was coming out the other end too.
The bacteria found in his blood are called pseudomonas and were very resistant to most of the antibiotics tested. Docs said it is a gut bacteria and continued with antibiotics.
His diapers continued to be dotted with blood from urine and no one seemed to be alarmed, I think its from the BK virus and the docs think that its from the mucositis. We can’t blast him with IV fluid like we did before because he is at risk for something called veno-occlusive disease which is a condition in which some of the small veins in the liver are blocked causing enlargement and fluid to spill into the lungs. We don’t even want to mess with that. Because this is very common in high-dose chemo/ transplant patients, fluid intake and output is closely monitored.
He had a pretty constant fever from Monday the 31st to Monday the 7th. He was given tylenol to keep it down. We weren’t sure of the cause since he was already on a few antibiotics. Apparently when counts are coming up, the kids can get fevers. His fevers finally subsided on Tuesday and haven’t been back since, fingers-crossed.
He has continued to recieve a platelet transfusion every nite for the past 2 weeks and he has gotten blood a few times.
His g-tube site got absolutely awful through last week. It was the worst infection he had ever had. The surrounding infected tissued became really soft and whenever there was any pressure from sitting up, having a bowel movement, or vomiting, stomach juice and mucous would pour out! This was very alarming to us, as we had never seen this before. And you know its bad when your nurse jumps back and makes a face. None of our nurses had ever seen anything like it. The tissue was very decomposed. Even the doctors were scratching their heads. The wound team was called in to come up with some solutions and after a few trial and errors, we came up with something that seems to be working. It is getting better very quickly, hooray for that!
Gus has been on TPN, total parenteral nutrition, IV nutrition for a few weeks now and we are starting to slowly decrese this and increase his feeds. We are also deecreasing his pain medication every day, as his body has become dependant on it and he needs to be weened.
Gus’s spirits are getting better every day, he played for 30 minutes on Tuesday, a few hours on Wednesday, and a few hours today. It is still hard for him to sit up. I fully expect him to be back to the jovial Gus we know and love by next week.
So as long as Gus’s counts continue to rise and he doesn’t develop any new problems, we will probably be going home by the middle of next week! I see the light at the end of the tunnel. I can’t wait to sleep in my own bed and wear pajamas all day at home! And to be able to have some privacy! The only privacy you get here is in the bathroom.
I wanted to say a quick thanks to our friends that have brought us a meal while we’ve been here, Allison and Leonard Fernandez and Mary Bradley. Thanks to my buddy Ian Macken and our Meehan’s family for bringing us dinner every night that we have been in need as well. Also thanks to Sherry Samuels and the Brain Tumor Foundation for Children for also helping us out with meals. Dinner is one of the hardest parts of the day for us and not having to worry about it has been awesome. We are truly blessed to have you in our lives.
Thank you for the continued support and prayers. Thank you also to all that continue to send me messages of encouragement through email, facebook, and signing our guestbook. I love reading them and they really get me through the day. It’s wonderful to know that people are out there loving and rooting for my mighty little man.
Hopefully my next post will be from home!