Words Are Hard

March 15, 2020

Dad again. I don’t have the brain power to try and write from a we, perspective today.

Last night was hard shortly after yesterday’s post Olly started experiencing more pain and more trouble breathing. Olly was given a new medication yesterday evening and I really wanted to see if it would help before bedtime so we gave it some time. It didn’t do the trick yesterday but it is also a med that could need a little more time to work. Around 10:00 it was decided to slow her rate of feed back to where she was comfortable earlier in the day and yesterday.

It was around that same time that her new iv from Friday infiltrated again. Nobody was really surprised by this based on the location of the iv and the amount of stuff going through it right now. As you can imagine the number of people around to do iv’s is pretty low at 10 pm on a Saturday so it was after midnight before we got the new one in.

The hope was that some if not all of the pain was iv related. It was not, Olly continued to show signs of pain in to the early morning hours even with the reduced feeds. One of the tricky things with Olly is that she can’t tell us what hurts so we play a guessing game every time.

The afternoon brought the hardest thing we have heard to this point. Doctors are now fairly sure that Olly’s G/I tract is failing. After talking through the options with the drs- we are going to give the PICC a shot. Scheduled for 1pm tomorrow and she will be sedated for it. It will give her complete nutrition and maybe some extra strength. Will slowly work her feeds up again this week and she’ll tell us if she can tolerate them.

While using the PICC line is a great stop gap to help the body heal or to see if the body can heal it is not a long term solution. Going home with a PICC for full nutrition will likely land her right back in the hospital and really just increase pain and delay her death. We can try it, give her full nutrition with it in hospital, and give her another chance or two to try and show us she can tolerate full feeds (30ml/hr). She hasn't made it past 15 without complications and there is little evidence that says she will, but we continue to pray asking God for a miracle. The next few days are key.

We have been encouraged to start having some difficult conversations about what are goals are in our remaining time with Olly. The famous quality over quantity debate. I think the hardest part is even still today as we are asked to start having these conversations it is really tough to put your finger on what conversations we should be having.

We are in a tough spot and have lots of decisions and conversations ahead. We are just praying for a miracle in Olly and for God's wisdom, guidance and grace through this time of uncertainty.

Also just a reminder that the clothing store closes at 11:59 pm on Monday night. Get your order in today so you don’t miss out.

Love you all.

Nate