Happy Easter everyone! I guess Gus had so much fun spending Christmas in the hospital that he wanted to spend Easter there too. We were called in Thursday night by the on-call doc. Gus’s blood cultures came back positive for a bacterial infection. I brought him into the ER around midnight and he received antibiotics and they did a chest x-ray because of his congestion. The x-ray revealed a slight touch of pneumonia, completely unrelated to the bacterial infection. Early Friday morning we were informed that his CVL line had to come out because of his infection. This was not such a bad thing because he really doesn’t need it anymore. The only issue was that his platelet count is still very low, especially for surgery. So he was given a transfusion before surgery. After surgery he was feeling  great! He was making jokes with all the nurses and all smiles and giggles. He did great yesterday and is still doing great today, other than being a little sore from surgery. His results came back clear yesterday for C-diff. Hooray! So we were able to get him out of his room for a while and play. He will be getting a port put in to replace his line on Monday and we will be able to go home after his surgery, hopefully.

Last week I spoke with Dr. Mazewski about several issues we are having with Gus. The first thing we talked about was the plan for treatment. He will start oral chemo at home in a few weeks. This is nothing like what he was getting in the hospital. About 20% of the patients treated on this regimen experience side effects such as hair loss, nausea, vomiting, and low counts. We should probably expect nausea and in Gus’s case vomiting, but his counts should not wipe out. In fact, he shouldn’t even need any kind of transfusion. He will probably be on this course for a year. His platelet count is still too low to start, so we are waiting a few weeks.

The next thing we talked about was the continued vomiting. We have tried all the meds and it feels like we’ve tried all kinds of methods with feeds, etc. The vomiting continues, at least once a day. She said that because Gus’s tumor and surgery was right at the nausea center in the brain, something could be haywire. Who knows. It is still a mystery to all the docs. She asked if we were interested in trying alternative medicine and I said yes please. She suggested acupuncture therapy and I was intrigued. She said some of her patients have had success with it in controlling nausea and vomiting and it would also be great for his physical and occupational therapies. She recommended a doctor that used to work for Scottish Rite. She has a practice and one of their areas of specialization is pediatric acupuncture. So I will be looking into this and trying to get insurance coverage.

I also talked with her about getting Gus eating again as well as getting him into a school we found for him. I will go into further detail on those topics in my next post. For now though I am still sick and very tired. Poor baby Audrey has now gotten our cold, too. I hope everyone had a lovely Easter Sunday. We had a great day hanging out and playing with the kids (even if it was in the hospital.)

XXOO Erin

Well we finally made it down to Florida to visit family and chill for a week. It was great to see all the nieces and nephews growing like little weeds. We stayed with my brother Travis and his ever-so-lovely wife Christy and their clan Nathan, Andrew, and Julia for part of the trip and then made it over to my sister Haley and her husband Mark’s pad along with their tribe Madelyn, Jackson, and Levi. Gus had a BLAST! He loves to play with kids and he did great keeping up with all of them. It was amazing therapy for him. By the time we made it back home, Gus was standing completely upright and cruising from couch to coffee table. He can now walk if you hold both of his hands and stand in front of him. He climbs up on the couch with no problem now. It is truly amazing to see how quickly he progressed and every time I see him stand up it makes my heart jump with joy. Of course he did not make it home unscathed, the second day we were there, he reached for the coffee table, missed, and slammed into it with his cheek bone. He had a big black bruise the rest of the trip.Yikes! It was good for him though, he needed a little toughening up and he sure got it hangin’ with his cousins. While on vacation we kept ourselves quite busy with a trip to Imaginarium, a children’s science museum. Gus got to touch a toad, a baby alligator, a boa constrictor, and hold a live starfish. He had so much fun. We also made a trip to the beach and he absolutely LOVED it. He played in the sand the whole time. Because he still has his CVL he could not get in the water, but he got his feet wet. We also got to spend lots of time with my dad and hang with my baby sister Montana. Tony and I were even able to go on a date without the kids! TWICE! This is the first time we’ve been able to do this since Gus got sick, OVER A YEAR AGO! The kids adore Travis and Christy and we felt very comfortable leaving them.

Right before we left Gus caught a cold from one of the kids and hasn’t gotten better yet. He’s been pretty miserable for a week now with an extremely congested cough and lots of mucous. He is very tired and has been trying to play, but just ends up laying on the palette I made him in the living room. Of course his counts are still lower than an average kid, so its going to take him a little longer to get over it. He woke with a fever this morning and we took him to clinic for IV fluids, labs, and antibiotics. Dr. Mazewski thinks its probably a minor ear infection or sinus infection and put him on amoxicillan. As I was finishing up on this post, I got a call from the on-call doctor. Gus’s blood cultures had come back positive for gram-positive bacteria and he needed to be admitted for treatment. We are now in the ER receiving antibiotics and waiting for a room. Oh, and I feel miserable because I got the stinkin’ cold too! YUK!

Gus is also battling C-diff again. Right before we left for our trip, I took a diaper sample to clinic to be tested because he had been having bad diarrhea for over a week. While we were in Florida, they called and said the tests came back positive for C-diff. He’s been on antibiotics for over almost 2 weeks now with no sign of improvement yet. We left another sample today at clinic and if it comes back still positive we are changing antibiotics.

I have lots more Gus news to share including a treatment plan, therapy, and pictures from our trip and Flashes of Hope.

sniffles**Mama E