Thursday, January 26, 2017

Set Backs

If there is a setback that could be encountered through this process we are absolutely hitting all of them!!! 
Seth has been in the hospital all week getting prepared to start treatment Friday.  Monday morning we arrived for his hearing test and to have his new central line placed.  His hearing came back as normal for his age the line placement went well.  He now has a double lumen and we made sure to ask the surgeon if it drew well.   
Waiting to go back for his hearing test and new central line.
After getting settled in his room.
Tuesday was a low key day with no tests scheduled however he did get his flu shot.  Steve and Seth got a visit from a high school friend whose son also had ATRT and has been through the protocol.  It’s nice to have a friendly resource that has been through this before and can probably relate to our feelings and questions the most.  Auntie Jenn also came to the rescue today delivering Seth’s beloved swing to help with sleeping at night. J  Wednesday he had another GFR test to make sure the medicine will flow correctly.  Steve mentioned to the doctors Seth had a cough, as a result they ordered a flu swab which would come back in 24 hours.   This also meant he was on precautions where all hospital staff has to gown and mask up to come in and see him.  
Dr. Wright came by this morning to check in on Seth and have me sign consents for today’s procedures.  She also mentioned she had been keeping an eye on the fluid collection from the craniotomy.  She said it may be related to the surgery, it may be related to his high white blood cell counts, and Dr. Goumnerova may need to repair that next week when she returns.  I asked if the reservoir could be placed at the same time and they would push for that but it would be up to the surgeon.  Today he had the CSF flow study to make sure the chemotherapy done through a lumbar puncture and later the head reservoir will flow correctly.  Unfortunately, anesthesia was running behind which meant Seth had to go longer without food.  He was less than happy about that but we did our best playing with toys and distracting him.  Dr. Wright walked us down to nuclear medicine once we got the call they were ready for us in an effort to speed things along.  He did great during anesthesia and they got the lumbar puncture right away and everything went smoothly.  He did not however like having his images done afterwards.  I can’t really blame him because he was wrapped up like a burrito, put into a machine where his head was held still and it was less than an inch away from his face.  You certainly couldn’t have paid me to get in there!!!  This was done three times today and we’ll have one final set of images done tomorrow. 
Hanging out waiting for the CSF flow study.
Late today the flu swab came back and we learned that Seth has RSV and will NOT be able to start chemotherapy tomorrow as planned.  While we understand Seth’s safety during all of this is the number one priority it doesn’t come without a lot of disappointment and frustration.  It has been almost two months since we got the devastating news Seth may have ATRT and we are anxious to get him started on the path to healing.  The plan for now is to get Seth healthy and then start treatment hopefully sometime next week.  Until then we’ll have a few days at home before coming back to clinic to see if Seth is well enough to start treatment.

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