Our Smiley Seth

Our Smiley Seth

Monday, April 17, 2017

Week 9

We headed into Boston early Monday morning as planned to avoid as much Marathon traffic and road closures as possible.  Unfortunately, Seth had a temperature in the morning of 100.6 so we knew he was most likely going to need antibiotics in addition to the planned platelets.   We packed up the kids and headed to my parents to drop Sadie off.
Due to his fever I called the doctor on the way into Boston to see if they wanted us to head to the clinic or the emergency room.  As suspected we were headed to the emergency room.  Luckily we flew right in, the best time we've ever made and the emergency room wasn't busy at all.  We got signed in and when they took his temperature it was even higher.  They took more blood for testing as well as blood cultures and things were getting started.  His platelets were 21 which surprised us since they were 11 the day before and his ANC was 350 which was also a nice surprise because his counts were already on the rise!  In the ER they started his antibiotic and gave him Tylenol to get his temperature down.  I was anxious to get to our usual floor because they know us and Seth and his usual routine.  We made it up about 11am and finished his antibiotics and got started with his nausea medicine routine.  Unfortunately he did get sick while we were in the ER so we were anxious to get those meds going again. 
Getting settled in on our usual floor.
I was planning on staying this admission so Steve and I had lunch together he and headed out around 2pm.  We decided to have him take the T to his mom's house rather than navigating through all the road closures so he could get home to have cake with Sadie for his birthday.  Seth must have been really tired after Steve left because he took a nap in the crib!
Later in the day Seth received his blood transfusion because his hemoglobin was only 6.8 in his morning blood work.  He seemed to perk up after, get some better coloring in his lips and cheeks and was playing with his toys.
Finishing up his transfusion.
Seth had a good night Monday only waking up once during vitals and a diaper change and settling back down pretty quickly.  Tuesday morning his ANC was a little over a 1,000.  This was great news.  The last two rounds he spent 7-10 days hanging around 0 so I was so happy to hear that he was on the rise again and was officially not neutropenic.  His platelets were 29 which isn't bad but in order to do the intrathecal chemotherapy they need to be 50 or above so there is a possibility of a platelet transfusion in the next few days.
Seth did get sick in the morning after receiving his magnesium.  Dr. Chi and Kate rounded later in the morning.  He will be getting his Vincristine later today and the hope is to either tap rickham Wednesday or do a lumbar puncture Thursday to give the intrathecal chemotherapy.  Dr. Chi explained that the fluid collection made it difficult to see where the rickham actually was and she didn't want to administer the chemo in the wrong place so we will have to see how it looks Wednesday.  I asked if the fluid collection is going to come and go as it has been will they most likely be doing lumbar punctures for all his intrethecal treatments?  Basically asking why did we place the rickham if we aren't going to be able to use it? After all this is hardware that's going to be in his head forever.  That will take time to see but that question will continue to be asked as we move along.  They can also ask neurosurgery to assist with finding the correct place to use the rickham and she will reach out to neurosurgery to make them aware.  The plan is to also have audiology come by for another hearing test.
He received magnesium later today via IV because his levels are still on the low side.  His fevers have been up and down so we'll continue to watch those and see what they do.  He does have to be fever free to 24 hours before heading home so we'll see what happens.
His Vincristine should be given overnight tonight and tomorrow should be a low key day.  I did ask about setting up some OT and PT for Seth since he doesn't seem to use his legs very much so that consult should happen tomorrow along with the attempt by audiology for an updated hearing test. 
We'll have to wait and see how the fluid collection looks but I have a feeling we'll be doing a lumbar puncture Thursday to administer the intrathecal chemotherapy as long as he doesn't have a fever.  Hopefully we will be able to go home after that for the weekend before returning Monday for his next big round.

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