The Road Home

Ever had writer's block even when you've known exactly what you want to write about? Or feel like you're so behind it would just take forever to catch up so you just keep procrastinating over and over? Yeah, that's me. There are so many things I want to say but I just don't know how to write it all without sounding like a manic depressive chick with ADD. ...But I'll try...I only have a whole month of updates to write about.

The word "exhausted" doesn't quite seem adequate to describe how I've felt for the past month. The NICU grind seems easy compared to our new normal at home. I just want to sleep. (HA! I'm realizing sleep is a thing of the past.) So that's another reason why I haven't updated this blog in forever. I'm just too busy and too dang tired! We have a dr. appointment almost ever day and sometimes even multiple appointments in one day. Brody has several meds that are to be taken throughout the day and then there's the whole feeding regimen. Pump, fortify, decant, add meds, feed. All day long. :) But anyways, here it goes...

The road to home was drawn out and postponed several times. On May 1st we got our first approximate discharge date of May 7th. Then on May 4th we found out about the Pyloric Stenosis...surgery was postponed twice which then put our discharge date out to May 21st. And then the day before discharge he got his first infection. That pushed the date even further back until May 27th. Then, on May 26th, as Adam, Ryder and I were enjoying the morning playing outside, Dr. Elmore called and said Brody's pyelostomy was getting too tight and he needed to revise it. He gave me the choice: either do surgery now and stay in the NICU a few more days or go ahead and go home on the 27th and then come back in a week for surgery. I didn't think twice...so I hung up, we jumped in the car, and Brody had surgery that afternoon. We expected to stay 3 or 4 more days but on the morning of the 27th, Adam called and spoke to his nurse. When he hung up he said the sweetest words, and I will never forget the way he sounded when he said, "Brody's coming home!" ...Fear and excitement and nervousness and relief and every emotion imaginable flooded my body. THANK YOU GOD! After exactly 11 weeks, we finally had our entire family home under one roof.

During that last month in the NICU every time someone asked me "Do you know when Brody's coming home?" I just had to say "Not yet"...I didn't even want to mention that it was possible he'd be coming home on a certain day or that we were even discussing it. So I apologize to everyone for not sharing that info before now.

But anyways, we're home. Well, kinda. Ok, not really. He was in the NICU for 11 weeks, home for almost 3 weeks and now Brody's back in the hospital and had his 6th surgery today. So here's how that happened...On Tuesday, June 12th, Brody had an appointment with his urologist, Dr. Elmore. He noticed that the stoma of his pyelostomy was getting tight again so he put in a catheter and scheduled surgery for the following Wednesday, June 20th. He told me that the catheter would probably come out in a few days so if it does, just make sure the pyelostomy is still draining. The catheter came out just after 2 days. That Friday night Brody hardly slept and was very irritable. He also had a low grade fever and by Saturday had lost his appetite (what little he had). We drove down to the lake Saturday morning, which I was REALLY REALLY excited about...finally, a family day...a day we could all be together with NO DOCTOR APPOINTMENTS! ...and maybe I could get rid of this vampire glow. Anyways, we got to the lake, I changed his diaper and it was completely dry. So we turned around and off to the ER we went. We spent about 8.5 hrs in the ER...a urologist put another catheter in his pyelostomy to drain the urine (It took several attempts to get a catheter in) and they did a renal ultrasound to look at the kidneys. (Gah, I hate freakin ultrasounds. Too many bad memories.) His CRP was 15 (suppose to be less than one) which indicated an infection. He had a spinal tap done to rule out meningitis. And he had a EKG done because his potassium was 7.2 ("dangerously high" which can effect his heart). He was admitted into the PICU around midnight and started a round of antibiotics. We were told his surgery would most likely be postponed because the anesthesiologist wouldn't mess with him if he has an infection. Monday night he was transferred from the PICU to the general floor. And surprisingly, everyone agreed to go forward with surgery on wednesday. So here we are. Post surgery. Dr. Elmore opened up his pyelostomy, looked at his bladder and kidney with a scope, and guess what...turns out he DOES have a ureter!! It's just not hooked up right and part of it is not an open tube but more of a cord. So now the question is when and how do we reconstruct the urinary tract. Before transplant? After transplant? ...Brody's team of doctors are going to all meet up and discuss future plans this Friday. I'm anxiously awaiting to hear what they come up with.
...It's now Thursday June 21st...and today's big event is a blood transfusion (he's severally anemic and they just keep drawing and testing his blood...a lot). He's getting his last dose of IV antibiotics before being switched to oral antibiotics so hopefully, HOPEFULLY Brody can come back home tomorrow (or at the latest, Saturday).