Not the news I was hoping to share...

This is definitely not the update I was hoping to share on the day we should have been reuniting at home as a family. First of all I want to start with some advice I will always remember from another momma who has been through a journey already that was 500 times longer than ours. She said - numerous times that as a momma you can't pour from an empty cup.

To be honest I feel like I'm not enough for anyone right now? I can't snap my fingers and make Maxy healthy again - thank God the fellar is still smiling because if not my heart would be in a permanent state of being broken but he is amazingly resilient and I could not be more proud of this little man. Then there's my babies at home - who when I go home are so excited to see me and I know they are confused and I miss them so much but when I go home I worry about what's going on here at the hospital even though I know Chris is here. And then there's Chris - we are ships passing right now. I haven't seen him for more than 10 minutes at a time in 8 days. He's my best friend and my rock and to not be able to really have him here is tough. And then there's our moms - God bless their souls. They have basically been on - full time - for 2 weeks and counting and I know they have to be exhausted and I hope they know how eternally grateful for them I am. 

So anyways - yesterday I had a hair appointment booked - which books out far in advance. And initially yesterday morning would have been our follow up, Maxy should have been healed, and would have been released from all restrictions and we would have been good to go. Once we came back into the hospital - I wanted to cancel but Chris and my mom urged me to keep it. Even when I found out he wouldn't be home and as late as 3 pm yesterday I wanted to cancel it. And they insisted I needed just a few hours to myself. And I'm so thankful that they did. I was gone 2 hours but it was good for my mind to clear my head and have just a teeny bit of time to myself. My stylist came with a glass of wine and said Momma you deserve this. It was heavenly.

So enough of that - on to today's update. As you can probably imagine from the title - in true Maxy fashion we've had a set back and will not be going home today. The team rounded this morning and the attending seemed a bit anxious about how his back looked but said that he was going to talk with Dr. Bowman and see what she thought. This was the first red flag that the day was going to go downhill. Shortly after Dr. Bowman can in and didn't seem overly happy with how his back looked. We've had him wrapped in an ace bandage to try to compress his back but there was clearly a big fluid build up and the base of the incision was looking a little irritated and almost like a pimple. As she was pushing and pushing she said it looked a little angry and we were going to watch it and see if we left the bandage off if it would tame down. Red flag number 2 - at this point I knew we weren't going home. Then she kept pushing and no sooner did she say "I'm going to keep pushing on this and really make him mad" - it popped like a pimple. Blood, pus and yellow fluid started pouring out. She called in the nurse and continued to drain it manually with her hands. What seemed like 100 gauzes later we got out a blood clot and some final squirts of blood and his back was flat for the first time in 2 weeks.

His surgeon expected some spinal fluid drainage as he had surgery where they punctured his spinal column and then had a spinal tap puncturing it again less than a week later. And the way she describes it is a pinhole in a water balloon.So as much as possible you can try to alleviate the pressure so the water isn't forced out -  hence why we've been keeping him flat in the hopes that it would give his body time to heal and seal that hole up on its own.

It's not clear yet what the fluid was - was it infection? Spinal fluid? Or a seroma? The doc is suspecting a seroma and she said she isn't mad that we were able to drain it manually - it may actually be a good thing and may avoid another trip to the ER for a drain or exploratory procedure. I am also very thankful it happened here and not at home because I no doubt would have flipped and called an ambulance. 

So what's next? As I mentioned we won't be going home today - and I'm guessing it will be a few more days at best - and that's if the plan is to just watch it. We cultured a sample of the fluid that drained and drew a cbc to check his white blood cell count this morning so we are waiting on the results of both of those until we formulate the plan. He's currently under npo orders (do not eat) which is never good or fun in the thoughts that we might be headed back to the ER but won't know until all of the testing comes back. No matter what the plan is he will have his picc line for an extended period of time now and will be on a much longer course of antibiotics. 

So please say some prayers for our sweet man - he's been through way more than anyone - particularly a baby should have to go through. I'll keep everyone posted as we start to get a better idea of what's going on. 

Here's to good news and a Cubbies World Series win tonight!

XOXO

K