A Little Bumpy Today

Today was a bumpy day. Simon slept really well last night and then was a bit fussy this morning b/c we kept having to screw with him. He was scheduled to have his PICC line inserted and Laura was feeling a bit overwhelmed with assisting with that process so she went to the cafeteria to hang with her parents for a bit. I stayed with him while we waited for the nurse from the NICU to come by to assess him for the PICC insertion. He was not happy about having each arm, leg and head ultrasounded to look for veins. At one point they had to put a rubber band on his forehead to try to get the veins to pop up. I wanted to laugh and I wanted to cry. It was pretty absurd.

Of course it wasn’t easy and they ended up having to put the central line in through a vein in his SCALP. He got his first haircut here…they had to shave the area on the left side of his head and gave me the hair. We’ll put it in the scrapbook that may end up being bigger than his chart right now, which is in a full 2 inch 3 ring binder. Here is Simon's chart for 9 days:

While we were waiting for the PICC team to get ready, our nurse tried to draw blood from the IJ line and realized it was totally coming out. It took me and 3 nurses to deal with the situation which involved sterile gloves, trying to thread the line back in a bit, snipping the one suture left and a lot of wiggling. Simon eventually had the fantastic coping response to just go to sleep. I praised him mightily for that. I do it when there’s turbulence on an airplane and it works like a charm. Sometimes you just have to check out.

They eventually got the line in and I’m just praying that his sweaty little warthog head will hold the tape, etc that’s keeping it in place. That said, my mission for the day was accomplished- one less thing or one thing better than what he has. The damn IJ is gone and now he has a PICC. Hopefully they won’t have to re-do it anytime soon or if they do it will be even better than the one they have (ie, maybe in a limb next time instead of his head). This kid is going to have some ridiculous war stories.

Talked to Dr. Rosenfeld aka Dr. Hunkypants again today. He said we may start to try to wean him off the IV Milrinone next week. This is the biggest test so far because if he can’t be weaned from the IV Milrinone, he can’t go home and eventually we may have to decide if we want to do a heart transplant. When we asked for timeframes for when we’d need to start thinking about whether or not to make that decision, he said if he’s on Milrinone for 2 months or so and can’t be weaned off, we would need to think about transferring him to Stanford and putting him on the transplant list. That said, there is a perfectly healthy 6 year old patient he has who was here for months on Milrinone and recovered completely. This is all just about waiting and seeing. This is my ultimate challenge in just letting go and not being able to control anything.

Our goals right now are to avoid any complications like an infected line and to get him ready to get off Milrinone and onto oral Digoxin and Nalopril (?). Think good strong thoughts for his heart and immune system. We passed the extubation challenge with flying colors and this is a huge next step. The overarching idea is that at about 6 months we’ll have a pretty good idea of what we’re working with and what 30% Shimmy will fall into (a) complete recovery, b) partial recovery with some residual damage and c) no recovery- awful decisions to make). We’re still shooting for a) and would settle for b).

Did a tally last night of his visitors. Mr. Shimmy Lavage has now had 50, that’s right, *50* visitors in a little over a week. And that doesn’t count the folks that have showed up more than once or the folks that have been to our house as garden/ yard angels. Today friends who are moving to Canada stopped by with their packed truck before they drove out of town.

Chatted with a very sweet woman in the stairwell who asked about Simon (never seen/met her before- she’s seen our signs in the shared waiting room offering food). She has a 3 week old in the NICU with sleep apnea and they’re going home tomorrow (yea for them!!!). She has 5 kids and lives on a farm in some far away town. He husband is having to take off work to do the morning and evening feeds on their farm and her 2 older kids are staying with her mom. I know what we are going through is horrible, but mostly I think about how totally blessed we are.

Here’s a little tally of some of our many blessings:
Our house is literally 5 minutes from the hospital
We have a HUGE network of support
We have health insurance
We both know how to navigate the healthcare system
We can schmooze with our doctors about travel and private schools and religion
We speak English
We have 2 cars
99% of what the medical teams are telling us we understand and if we don’t, we know what to ask to clarify or where to get more information.
We have friends who are medical social workers who can help us deal with insurance/disability questions.
Our midwife came to see us to help us with lactation.
Our parents can take off work to come be with us
Our friend Reid moved 5 houses away a few weeks ago and can take care of Roxie
My work is flexible and letting me go back to work part time until we know more about what’s happening
Laura wasn’t scheduled to go back to work till November anyway
The director of Oncology/Hematology is a friend from the Dog Park AND the Executive Assistant to the CEO of the hospital is a friend.
GOD FORBID we have to think about transplantation and decide to do it, the hospital will be in the home town where I grew up and we can stay with my parents

For these and so many other things, I am thankful…