Alex and Maddy

Alex and Maddy

Sunday, January 14, 2018

Trying to get back to Normal

This week was all about getting back into our routine.

Last Sunday we were able to make it to church for the first time in a month. Church feels safe and like home to both Alex and I. It was a good first outing for him. A Place where he is accepted exactly as he is. A place where everyone is happy to see him. A place where it is okay to be even if he isn't 100%. he enjoyed seeing friends, but was so wiped out and pale after the hour.

Monday was super busy for the girls. Maddy was back to dance. I can't tell you how much I love having a little girl who shares my love of dance. She is leaping and twirling all over the house ALL OF THE TIME! She loves her class and her teachers. I am constantly amazed watching her and thinking back to the little girl who couldn't crawl and who never beared weight until she was 18 months old. She has come so far with that little determined spirit!
Monday was also my first day of work. I was able to get set up and begin my training which continued all week. I finished off the day with my monthly meeting at the hospital for the Family Advisory Council.

Tuesday was Mad's first day back at school and boy were we ready! Maddy was excited, but the rest of us were equally excited as she was making us crazy! I cannot rave enough about her preschool. She feels loved and enjoys the learning, the creativity, the social time, everything.

Wednesday we started off the morning seeing our pediatrician to fill him in on Alex's hospitalizations and surgeries. He was happy with how Alex was doing overall and in agreement with our treatment plan regarding the relentless pancreatitis that we cannot clear! Alex also went back to acting. I was proud of him for going despite still not feeling great.

Thursday the kids both saw hematology for their six month check up. Overall they are both doing well in this arena and it was a pretty easy appointment. Thursday night Alex went to his first Improv class and LOVED it. I was so happy to see the big grin and hear the laughter in his voice that we haven't seen very often over the past few months. he cannot wait till next week to go back again.

Friday we had two more appointments to finish out the week. Not much to report from these.

Medically we are kind of stuck right now. Alex has recovered nicely from his surgeries. He is completely over his infection that brought us into the hospital in the first place. Unfortunately, the stress of what his body went through left him with the most persistant case of Pancreatitis we have dealt with in years. He hurts, he is nauseous, he is tired. It is hard to feel cruddy all the time and see no end in sight. We had attempted to reintroduce Feeds (pedialyte at 10-20 cc/hr) late last week. However, his pain and nausea increased and his lipase went up 400 points to almost a 1000 (should be under 70). So we had to stop again. This leaves him hooked up to IV fluids close to 24 hours a day. We are anxious for him to get back to his baseline and hopefully even better soon!

Sassy Girl heading to Dance
So excited to head to school
Always Joyful
His sweet Zoey keeps him company when he doesn't feel good.
Thank you to everyone who has continued to keep us in your thoughts and prayers. We continue to ask for prayers for Bruce to find the perfect job and for Alex to feel better.

Ali

Saturday, January 6, 2018

Home, Sweet Home for the New Year

I am so sorry for the lack of updates! We were able to buy our way out last Friday. The doctor wrote his discharge orders at 11:30. The nurse had everything ready and prescriptions filled by 2:00. However, we were informed that we would not be allowed to leave until the Home Health Company delivered some supplies to the hospital. I asked if we could just have them delivered to our house, but home health insisted they had to come to the hospital. We waited and waited. The nurse and charge nurse,and case manager called repeatedly. Home Health finally got to the hospital at 8:00 Friday night!!! To say we were annoyed is an understatement!

I spent all of last weekend and the majority of the week trying to dig myself out from the load of work that happens from being gone for 3 weeks and Christmas combined! We were able to put the house back together and I was able to catch up on my household stuff to the point that mid week, life started to feel a little bit normal again!

Where we are now...

Bruce continues to look for work. Late this week he had some good leads and we are praying he finds an amazing job with amazing insurance soon. We did have a little "excitement" when Bruce's former company cancelled our COBRA insurance. You know the one that we pay $1780/month to be sure the kids health is not affected! We are hoping this is fixed by Monday as we have already had to cancel 4 appointments because of this mistake.

I have some exciting and unexpected news! Several years ago, I was approached by one of Alex's supply companies about joining them as a consumer advocate. At the time, Maddy was an infant and it was not the right time. In November, it came to my attention through multiple sources that they were looking for an advocate again. I applied and after 4 lengthy interviews i was offered a job the week of Christmas. This is a really unique situation because I can work from home about 15 hours a week. They completely understand my life and can be flexible about appointments and hospitalizations. I officially start Monday. I am excited to begin this new chapter.

Alex is still not back to 100%. He still has pancreatitis and is still struggling with pain. We have not been able to get feeds restarted. His energy level isn't great, but not entirely unexpected after 2 surgeries, sepsis, and pancreatitis in a months time. It is nice to see a smile on that face and we have managed to get him out of the house a few times this week. We are hopeful he feels a little better this week as several of his activities restart this week.

Maddy had a really hard time emotionally with Alex and I being gone for so long. She is still pretty clingy and wanting me to do everything for her. We are excited for her to get back to dance, school and therapy this week as I think it will help her feel like things are more normal. She has been struggling with daily leg pain so hopefully we can get that sorted out.

We have a large amount of appointments this next few weeks as we follow-up with all of the specialists we were followed by in the hospital.

We are so very grateful to everyone that has supported us in countless ways over the past month. We head into 2018 with hope that it is a year full of health and happiness.

Ali

Thursday, December 28, 2017

Surgery Update

Alex had surgery this morning to replace his port and pull his PICC line. The surgery went extremely well. A side note here to explain why we love this hospital and these doctors so much. Alex's favorite anesthesiologist is on pain service this week.  When he rounded on Tuesday we told him Alex had surgery today to replace his port. He knows he is our favorite and understands Alex's anxiety. He put himself on the schedule this morning to do Alex's case to help him feel better about it. Then left the OR to continue to round on pain service.

The great news is we are getting really close to discharge. It could be anytime over the next few days, While we are not back to baseline we are at a point where he is stable enough that I can care for him at home. We will continue to try and get him back to baseline as he improves from the two surgeries and pancreatitis. The only issue we have dealt with today is an extremely high heart rate. His Heart rate has stayed between 120 and 170 all day. We are not sure if it is from anesthesia or pain. We are hoping it looks better tomorrow because we definitely won't be sent home with a HR like that.

Thank you for your continued thoughts and prayers.
Ali