Our Smiley Seth

Our Smiley Seth

Friday, February 3, 2017

Week One


Friday morning we headed into the clinic.  We were cautiously optimistic that today would be the day Seth begins treatment.  We arrived and Seth had his vitals done and there was no temp!!! Yahoo.  Dr. Wright came over to see us in the infusion area after his blood work was taken and said we would get started here in the clinic shortly while they got the paperwork submitted for us to be admitted to Children’s later in the day.  Fortunately, they had an open private room so we took advantage of that because we would probably be there until at least 5pm before moving over the 9NW at Children’s.  Seth was started on IV fluids and a slew of anti-nausea meds of Zofran, raglan, and Benadryl to minimize the effects once the chemo was started.  He will receive all of these and possibly Ativan for the foreseeable future to help combat any nausea he may have. 
Hanging out getting fluids
 
At 2:15pm the first medicine arrived.  This was pretty emotional for me and Steve but Vincristine is the fastest of all the chemotherapies Seth will receive and was administered through his central line over 5 minutes.  Next up was Cisplatin which arrived in a big brown bag.  Not exactly what you want to see hanging from your baby’s bedside but it is sensitive to light so they protect it with these bags.  That would run over 8 hours and make the trip over to Children’s with us later.  The nurses explained now that Seth has begun his chemotherapy his diaper will need to be changed every 2-3 hours to protect his skin from having the chemo sit on it and we need to wear gloves to change his diaper to protect our skin.  While we were waiting to hear his room was ready I noticed he was getting rather warm as he was sleeping on me.  Sure enough he had a fever!!!  They drew cultures, he was given Tylenol, and we spent a little longer at the clinic waiting for his temp to come down a little.  Jess from 9NW came to get us around 5:30 and we made our way over to Children’s.  Once settled in at Children’s Steve headed out to the car to get our essentials which includes Seth’s swing!!

Getting settled in our room
 
 
Seth had his dressing changed and we settled in for the night.  Unfortunately, due to his fevers and RSV diagnosis last week we are in isolation which means Seth has to stay in his room until we’re taken off of precautions (we are not sure when or if that will happen).  Our night nurse Laura was really awesome!!! She managed to do everything she needed to while Seth was in the swing and he only woke up once overnight to eat.
Saturday morning we had some down time before the next batch of chemotherapy arrived so I took advantage and did Seth’s 7 month photo shoot.  He was oh so happy!
 
 
Around 2pm the next two chemotherapies arrived.  Doxorubicin which is an orange color and once again had it’s own special brown bag that would run continuously over the next 48 hours and Cyclophosphamide that would run over 72 hours.  Again this was really emotional for me to see.  Seth was hooked up to this fancy attachment to his central line that allowed both chemotherapies and his fluids to run in together.  A little daunting at first but we quickly got used to it and covered it up with blankets to keep it out of Seth’s eye sight and reach.  He did fairly well all day continuing to eat and drink his bottles regularly.
Sunday he started to get a little fussier and uncomfortable.  His heart rate was elevated so an EKG was done but it came back that he has a normal heart rhythm it was just fast at the moment.  He also spiked a fever but never ended up with cultures or antibiotics.  Gramma and Grampa came to visit for a while and brought us some supplies J.  He got more and more fussy as the day went on which was really hard because it was very difficult to get him to settle down.  Usually the only thing that worked was me bouncing in the recliner until he fell asleep on me.  We asked if there was anything else that could be done but as of right now they said these are the side effects of the chemotherapy.  Since it was Super Bowl Sunday we did get Seth all dressed in his gear to cheer on the Patriots but he slept through most of the game which is good because he needs the rest.  This meant Steve’s cheering at the overtime win had to be very quiet!
 
Monday he was still really fussy.  Jenn and Bob came for a visit and thankfully brought the extra swing cover.  Luckily when Kate and Dr. Kieran were doing their rounds they saw how uncomfortable Seth was and this time when we asked if there was anything else they could do they said we could give him some morphine to try and make him more comfortable.   It arrived shortly after and even though it didn’t look like Seth loved the taste it seemed to give him the relief he needed so he could get some good rest sleeping on me for a few hours.  Kate also looked in his mouth to see if maybe the mouth sores had started early because he was so fussy and really wasn’t interested in his bottle.  She said she saw what looked like thrush on the back part of his tongue so he was put on mouth swabs to try and clear that up as well.  They also decided to do another flu swab to see if maybe that is what was causing the fevers.  The Doxorubicin ended at about 3pm so we were hoping that would maybe help with his fussiness.  The night nurse asked the doctors to switch his morphine to his central line so he could sleep through the night.  Fortunately he did get a good amount of rest at night.
Tuesday I woke up to Dr. Kieran checking in on Seth!  I guess we were all getting some good rest.  Dr. Kieran said the morphine seemed to be helping him be more comfortable so we could continue that as he needed it.  He also said due to the fevers and just overall not feeling well it was unlikely he would make it home this round which we had been prepared for from the beginning.  He also brought up the topic of the NG tube since Seth hadn’t been eating.  He explained it was an easy procedure that the nurses do at the bedside and would be used to make sure he’s getting the nutritional value he needs.  IV fluids have been ok for now but if he continues not eating this will be necessary to make sure he doesn’t lose a lot of weight and lack what he needs nutritionally.  We also want him to continue using his stomach muscles.  They will let us know when we reach that point.  I also asked when we can expect him to lose his hair more to prepare myself than anything else.  And Dr. Kieran said usually around the 2 week mark is when you’ll see a little on the pillow and then it will gradually become more and more.  Yesterday I started not feeling too well myself and later today the nurse came in and told us Seth’s swab had tested positive for the flu.  Our little man just can’t seem to catch a break!!!  He also had a fever so more cultures were drawn and antibiotics were given.  However this morning he was a little more playful and a little less fussy. 
video
 
His Cyclophosphamide was due to end around 2pm and the Patriots rolling rally was happening in Boston today so I was planning for both of those to end before heading home to spend some time with Sadie.  She has really been missing "her family" and has been asking for us a lot.
 
Wednesday he received his GCSF shot which is given as a recovery medicine to rebuild the immune system after chemotherapy is given.  He will have this daily now.  Seth will have today and tomorrow before getting more chemotherapy on Friday.  We still are not certain when we’ll be able to get the intrathecal chemotherapy in given his continuous fevers and not being able to be sedated as a result.  The doctors ensured us we will get them all in it’s just a matter of when.
He's getting really good at sitting up :)
 

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