Week 5

Monday we headed into clinic for our 11:30 appointment.  This would be our first official Monday clinic visit since Seth was diagnosed and this will be our normal clinic day so I was interested to see how it all worked.  We were blessed with another blow out diaper on the ride in by Seth so we tackled that before checking in.  We were taken back shortly for vitals and weight, the nurse then called Seth back for blood work, and then I joined Steve and Seth in an exam room for cap changes, dressing change, and the feeding tube stickers being changed.  Seth wasn’t a happy camper with all of this but I think he does really well all things considered. 

 

Back in the waiting room we had enough time to eat our sandwiches before being called back to meet with the Dr. Eng and Dr. Wright.  They said he was looking great, his labs were good, we would plan for the intrathecal later in the week and to call if he spiked a fever.  The visiting nurse would be starting labs later that week to watch his counts and we would probably have to come to the hospital as well to monitor when he would be approaching the time for another stem cell collection.

We then went over to infusion room 4 for his chemotheraphy.  This was just the 5 minute Vincristine so I thought this would going to be a short visit but I must have been dreaming.  Because it was close to 4:15pm before we started that.  Fortunately, it was a friendly face from 9N who was giving Seth his chemo.  Jess was the nurse who showed me how to flush Seth’s line when the original one was placed and she also picked us up to come over to 9N on Seth’s first day of chemotherapy.  Always nice to see a friendly face during this process.

 

Earlier in the day we had made the decision that Steve would also learn how to give Seth his GCSF shot because of the blizzard that was expected the next day.  We didn’t want him to miss a dose and we didn’t know if the visiting nurses would be out.  He practiced on a lemon and then gave Seth his shot and did great!  Good thing he learned how because the nurse had left us a message saying she was going to come between 9 and 10am which was way too early for Seth to receive his shot.

It was a long day and of course we got out right at rush hour.  We took the back roads home to keep moving and arrived around 6.  Sadie was happy to see all of us and we were happy to be home.  I guess clinic days won’t be quick appointments.

 

Seth woke up a few times during the night and just seemed a little more uncomfortable than he had been.  We checked his temperature early in the morning and it was 99.8.  This isn’t a temperature but he had been ranging in the 97-98 range and with the storm coming we wanted to make sure he didn’t spike in the height of the storm.  Steve called the doctor and we all agreed together it was best to have Seth come in the ER and then be admitted.  During all of this Seth also got sick during a feed and his tube came out a good amount.  As a result we had to pull it so formula wouldn’t get into somewhere other than the stomach.  We got everyone all packed up and they were off before the storm was too heavy.  It was disappointing they had to go in when nothing was wrong but set our minds at ease that he was where he needed to be if things did deteriorate quickly.

Waiting in the ER for a room

 

This morning Seth received platelets as they were low in his blood work and Steve noticed the injection site from his shot the day before was red and had a bump.  The doctor said this could be a result of the low platelets because bruising is a common symptom of low platelets.  He will most likely get more tonight and maybe even tomorrow morning.  He is due to get his intrathecal chemo tomorrow and they need his platelets to be at 50,000 to proceed.  Here’s hoping they are high enough to get the intrathecal safely and not having another set back.  His counts are dropping and he is close to being neutropenic with an ANC of 800 so that is another reason he just hasn’t been feeling well.  I hope he has a restful night and Steve can get some rest too.