Our Smiley Seth

Our Smiley Seth

Friday, June 30, 2017

Golf Success

The Seth Bottari Invitational Golf Tournament was a huge success!  We can't say thank you enough to Eric who took this on in a very busy time in his life. We are so overwhelmed by all the love and support that was seen during the planning and on that day.

The kids and I would have loved to be there as well but were unfortunately unable to make it due to discharge, home nursing, and IV medication delays but, we can't say thank you enough.

More importantly we hope that all of you enjoyed a day away from work while hanging out with friends.

RIP Joe ... we love and miss you.

Seth can't say thank you enough!!!


Tuesday, June 20, 2017

Gut Rest & Line Removal

Tuesday Seth seemed to be doing a little bit better.  The white lumen of his central line still came back showing infection and if it wasn't cleared up with the cultures taken that day it would be removed on Wednesday. 
Later in the day Seth developed a new fever reaching 39.5 and was shivering again.  The doctors made the decision his line needed to be removed emergently because it was too risky to keep it in.  Steve called me after the decision was made and I rushed in to be there for the surgery which happened around 6pm.  He received platelets during ththat timeand when we were back in the room he also received a blood transfusion.  Seth came out of surgery with 4 IV's, one in each hand and foot, so they would have enough access to give him everything he needed and just in case they lost one. 
It was so sad to see him like that and he was pretty miserable.  I decided to stay over night and how things went in the morning and see what the team had to say. 
Wednesday morning Dr. Chi rounded and while Seth did look much better since the line had been removed we discussed how quickly we could get the PIC line placed because he was just miserable with the 4 IV's.  Thank goodness for the PCA of morphine which helped Seth sleep through most of the days until the PIC line could be placed. 
Thursday morning Seth was scheduled to have the PIC line placed but fortunately for him someone cancelled even earlier and he was taken first thing in the morning.  It's always hard being away from Steve and Seth when he needs these procedures.  Luckily, this was done with mild sedation and in a procedure room rather than in the OR.  His ANC was 530 when taken in the morning so he was just on the cusp of becoming neutropenic. 
Friday after work I headed into Boston to trade places with Steve.  Before arriving they had shut off Seth's continuous morphine drip because he had decreased the amount of button pushes he needed and didn't require any during the day either. 
Saturday morning his ANC was 12,660!!!  He really just jumped right back up, we're not sure he was every really considered neutropenic this round.  His PCA for morphine was also taken down completely.  While he was feeling better he was still on gut rest so we just enjoyed a day of walking the halls talking to all his ladies (the nurses), napping, and playing in the playroom.  He is considered the mayor of 9N at this point and everyone stops to chat with him. 
Sunday was more of the same and we got a visit from Steve and Sadie before swapping places again.
It wasn't until Tuesday that Seth finally got to start slowly receiving pedialyte through his G tube.  He did well with that and on Wednesday they started a combination of pedialyte and formula and Thursday he was up to full strength on his formula.  We're still working on bolis vs. continuous feeds and how much to give over what amount of time but overall he's doing fairly well tolerating his feeds.
The next steps for Seth's treatment have been a moving target it seems.  First we were going to continue on with chemotheraphy skipping to week 27 of the treatment plan because 19 and 23 haven't shown to be very effective with AT/RT.  Then we were waiting to hear if neurosurgery would be operating again to remove the last portion of the tumor because transplant would like no signs of disease before moving on to transplant.  Finally, Thursday late afternoon it was decided that Seth would be moving on to stem cell transplant.  After transplant Seth will continue on with the maintenance portion of the protocol.

A lot of things are going to have to happen over the next few weeks in preparation such as an MRI, numerous blood tests, a lumbar puncture and many follow up appointments at the clinic.  Right now Seth is tentatively scheduled to begin the process the week of July 17th. 
Before heading home on Friday a friend from high school and her family stopped by to say hello.  Her son has been through the At/RT protocol and they were in town for an MRI and follow up at the clinic.  I was so happy to see them and finally catch up.  We've been emailing back and forth but it's not the same as seeing someone face to face.  I wish we had more time to chat and just talk but they had to get to his appointment and we were headed home.  She's been such a good resource of information/experience, ear to listen to grievances and wins, and just overall huge support.  I'm so happy we finally got to see each other even if it was for a short time.
The nurses and staff of 9N gave us a bubble send off because unfortunately transplant happens on the 6th floor.  We are going to miss them during that extended stay for sure!!!
For now we're headed home and looking forward to spending time as a family and celebrating Seth's birthday!  Can't believe the little man is going to be ONE!


Sunday, June 18, 2017

Blood and Bowel Infection

Sunday morning we were looking forward to celebrating Father's Day.  Steve had planned to meet his family with Sadie for breakfast to celebrate and later in the day we had plans to head to my parents for lobster, steamers, and grill food. 
Saturday night Seth was up for a few hours and was difficult to get settled.  After giving him Tylenol and not settling we gave him some pain medicine.  He seemed to settle down for a little while but in the morning he was still more irritable than usual. 
I headed downstairs with the kids so Steve could maybe sleep in a little bit.  Sadie was anxious for Dada to come down and give him his gift so unfortunately he didn't get to sleep in too long.  She was so excited to give him his gifts and was more than happy to take pictures of the one of a kind items.


Around 8am Seth was still pretty uncomfortable but then started shivering and sounded like he was breathing really fast while I was holding him.  I called Steve downstairs and he put a call into the Jimmy Clinic and soon after he was headed into Children's with Seth.
Seth had a fever of 39.5 which is one of the highest he's ever had and his heart rate was extremely fast, in the 200's.  His blood work came back and everything was still looking good so we needed to wait for the blood cultures to come back.  He was sent for and x-ray of his belly due to the bloody stool and it showed air in his intestines.  They explained to Steve that he had a bowel infection and would have nothing via his stomach or G tube until the infection cleared.  He was put on 3 antibiotics as a result. 

Sadie and I headed to my mom's and I would go to the hospital later because Seth was still very upset and hard to settle.
I got in around 6pm and shortly afterwards the resident came to visit and give us some information on what the plan was.  Not too much longer she came back and told us Seth's cultures had come back positive for bacteria.  This is the first time we've ever had this happen with all the cultures he's had drawn.  They weren't sure what the bacteria was yet and wouldn't know for a few days but hopefully the antibiotics he was on would start fighting the infection.  Once they knew for sure what it was they could change the treatment if necessary.
It wasn't the Father's Day we had planned for but we made the best of the night by playing Heads Up and getting out of the hospital for some dessert. 
Seth was still pretty upset when we got back and wouldn't let Steve sit with him while he was sleeping but would with me.  I decided to stay because I wanted to hear what our normal team had to say about his condition and the treatment plan.  He spiked a fever again around 11pm with the shivering and fast breathing again.  So scary to see him like that and not being able to do anything for him.
Monday morning Seth was still really upset.  Kate came to check on him early and we talked about how the morphine he was receiving wasn't lasting the whole 2 hours.  He was very puffy from all the fluids he's receiving and just uncomfortable.  She would put the orders in for a PCA so he could receive the morphine continuously and avoid a lapse in coverage. 
Dr. Chi rounded later with the team and told us the infection in Seth's line was an M negative rod infection.  They would take cultures daily to watch the infection and hope it responds to the antibiotics.  It is a possibility that it could not, which would mean his line would have to be removed, he would have to be free of infection, and not neutropenic (which is most likely coming as his counts drop) before he could receive a new one.  This would involved everything being done through peripheral IV'.  The thought of that for him with everything else he's already having to go through is awful.  We are crossing our fingers, toes and everything else that isn't the case so he doesn't have to go through 2 additional surgeries.  He will begin nutrition through his IV called TPN later in the day. 
Seth went for another x-ray of his belly because of his visible discomfort and later in the day the PCA for morphine was set up and then increased because he was still visibly upset.
The general surgery team came to see Seth and explained that the damage to his bowel was rather severe.  This type of infection in a child of Seth's age is uncommon but because of everything else he's going through he is more susceptible to infection.  He will definitely have nothing through his stomach or G tube for at least 7 days but could be upwards of 14 to give his gut a rest.  They will be watching him closely to see how things are progressing.
Now it's a waiting game.  Hoping this infection clears with the antibiotics and Seth starts to feel better because he is so uncomfortable.