The PICC Fix

I watched the sun come up over Sick Kids, the Toronto General, Mount Sinai and Princess Margaret Hospitals last Saturday morning morning. I wasn't up because of a burning desire to commune with nature, but rather with eyes burning from fatigue, banished by my son from his hospital room because he was angry at the world and mama got the brunt of it.

It was a really rough weekend. Mario spent Saturday evening and Sunday during the day with him. He was so upset about the IV and PICC issues and then to add insult to injury, because he had to go into the OR today to get his PICC fixed, he had to have ANOTHER COVID-19 test (#6!!!)!!! 

While Mario did his best to get Ollie to eat real food (especially as they had to stop the liquid nutrition called TPN because his PICC wasn't working properly), everything was overshadowed by Ollie's stress and agony over the IV and PICC. 

He did have moments of fun with Daddy when he let himself.

Ollie had a rough Saturday night with lots of bad dreams and waking up missing me. Naturally he loves daddy, but as he's told me before, "Daddy is best at fun and Mommy is best at helping with feelings." Mario basically told me same Sunday. They waited for me to do the COVID test yesterday and Daddy stayed to help us. 

Mommy offered to let Ollie help her to do a COVID test on herself. In the end Daddy took one for the team and had Ollie help him to put the swab up his nose to show him that if he stayed calm it won't be so bad.

It took a while, but we did get Ollie's done with minimal crying and anger. 

Once that was done, Ollie was happier and more engaged in play. He still had moments of upset and anxiety on Sunday knowing that he'd likely have to have the PICC replaced in Monday. He also had a restless night Sunday.

On Monday they confirmed that there had been a cancellation in the OR and they could take him at 2:30 pm. 

It was our first and although not a bad one, hopefully our last experience in an OR at Sick Kids. It was done through the Image Guided Therapy (IGT) unit. They were prompt.in bringing us down to the IGT on the second floor, but then we waited an hour to go into surgery. Thankfully Ollie was calm and slept while waiting. They didn't even need to give him any extra meds to relax him before the general anesthesia.

It took about an hour and I waited in their very socially distanced waiting room. They had to remove his previous size 5 PICC and replace it with a size 4 because they wanted to give his vessels a break. Fine, but if he rejects the stem cells for any reason and we have to do a second try at it, we'd likely have to go back up to a bigger line for transplant. Since this is central line number five in the past ten months we are going to be cautiously optimistic and hope that he'll only have this one in for a few more months post transplant to allow them easy access for bloodwork and to push meds if ever needed and then he'll never need one again!

When he came out he was okay in recovery, but became angry as he became more lucid back in his room. Mario and I both stayed until he was calm. We've seen this many times after surgery as the anesthesia seems to make him aggressive. 

He did finally calm down and I was able to head to the condo to see Abby and my mom and stepdad who had come up on Sunday to spend a few days with us before Abby leaves for Ottawa. 

As always Mom arrived loaded with groceries and fed us too well for the few days they were here. 

They would have loved to see Ollie, but because of COVID and him being in the Bone Marrow and Stem Cell Transplant Unit, that wasn't possible, so they promised to come back to see him when he's back at the condo before we head back to Ottawa. He was very sad not to see them in person.

Tuesday Ollie was pretty tired from his surgery, but other than a bit of tenderness in his arm, he felt okay. 

And so began our more aggressive trial and error with solid foods. He can't be discharged until he's eating solids and able to take his meds orally. 

So far there are few tastes that he likes, but my family (especially on my dad's side) will appreciate that dill pickles are something that he does want. Wednesday night he managed to eat a bit of a ham (no deli meats for him due to possible bacteria, but he can have the packaged Maple Leaf without preservatives and as long as it is a brand new package), mayo and pickles sandwich and was thrilled to find something else he can tolerate. Watermelon is also okay. So are ring pops! LOL We'll keep trying until he is eating enough calories that they can take him off of the liquid nutrition (for now they have reduced it).

 

As for meds at home, he'll be on Tacrolimus which is an anti rejection drug; his Lorlatinib to ensure all of the cancer is gone and there's no relapse of lymphoma; Ondanzatron for nausea; Hydrocortisone to regulate his adrenal system until it can function again normally; and vitamins. Thankfully they will be spaced out several times a day and he's no stranger to this type of routine. We've started the Lorlatinib two days ago and the Tacrolimus orally today and each day this week we'll work up to having them all orally administered.

On Tuesday he also had his weekly ECG to check his heart and a visit from Optomology. His eyeballs have been hurting him on and off the last few days. It could be the after effects of radiation as we saw about a month after his treatments in Ottawa, but our fear is always that it's lymphoma still in his brain. Thankfully the Lorlatinib would target any lymphoma cells left and the optomologist said she saw nothing to be concerned about, that the optic nerve is clearly significantly damaged but doesn't look inflamed as it once was. She suggested it might be dryness or fatigue causing the pain, to monitor it and let them know if it persists.

We're finally moving in the right direction again and plan to stay that way so that he can come back to the condo over the next week and maybe even be able to spend some time with his sister before she goes. 

Thanks for your continued interest!