Ups vs. Downs - Ups in the lead!

Pics: Figured out that unwrapping a present (with ANYTHING inside) is the new ticket to getting Kahlial to do what has to be done and to calming him down afterwards. He gave us our first fabulously fake smile :) after opening a little present... we'll take it!

What a day. Plenty of ups an downs. After the last post, we spoke with Physical Therapy (PT) and decided it was time to get Kahlial back into our arms. So, we started with the arterial line... definitely a DOWN. We had a lovely nurse taking care of Kahlial, though just finishing up her orientation and a bit unsure of herself. The A-line was taped up with the IV, so she asked for some assistance from a seasoned RN. They did fine until it came time to take the sutures out that held the A-line in place. The sutures were quite tight and close to Kial's skin so had trouble getting the scissors under the suture. Every time they'd attempt, it would pull at his skin and he would flip out. I was trying so hard to be patient, but really just wanted to get in and get it done myself. By being unsure and trying to be so gentle, it was prolonging the process and getting Kahlial really worked up. Finally I had to ask if they had a scalpel to use, would be so much easier to slip in and snip off. Just about the time I started getting a little hot, and a little sick to my stomach because Kahlial was so upset, they got it. Finally, thankfully, they got it, though it didn't end there...

Still they had to re-dress the remaining IV and take out his foley catheter, but nothing compared to those darn sutures. We changed his diaper for the first time and it quickly became evident that his right hip (graft site) was quite painful. Up to that point he'd only been complaining of the eye pain. Was hoping to hold off on pain meds in order to have him a bit more alert while sitting on my lap so that he could try to drink something (another "to do" before we could be transfered). However, it was obvious that pain meds were priority #1 right then. So we got some more IV Morphine, gave it a little time to take effect, then went for the transfer... another DOWN!

He gets quite scared whenever it is apparent that someone is going to try to move him at all. I can only imagine how he feels to be trapped in this giant contraption and not be able to move his head or neck. The pin sites are obviously painful and sensitive too. However, he does settle in pretty quickly once the move is complete. What a trooper! Our true hero. So he sat in my lap all propped up with pillows for a couple of hours and napped...

Until he got rudely awaken with an eye exam, dye and lights. Yet, it was reassuring to us to hear that there was no abrasion seen on either of Kial's eyes. Dr Lehman thought it possible that he may have had one that already resolved, or else it was never an eye injury to start. However, this now meant that it was possibly the pin impinging on a nerve causing the trouble and could possibly need to be removed... argh! Later on, K started complaining about both eyes, so we're now thinking and hoping maybe it's just the swelling and discomfort of the actual pin pressure from above. If that's the case, the pain should go away with the swelling and/or lessen as he becomes accustomed to the "situation."

Oh, forgot to mention that Dr Mackenzie stated that he felt good enough about the bone graft and fusion that there could almost be an argument for a different form of immobilization that did not include pins vs. the halo immobilization... I just thought, "Don't tell me this now!" (I know they couldn't really know until they got into the procedure). "But REALLY, do you have to tell me that this horrible contraption with the eight screws in my son's head could have possibly been avoided!? Seriously! Keep in to yourself." Sorry, a little frustration there. I just look at the next hours, days, weeks, and months and don't want to even know about the easier route that is no longer a possibility for us... "REALLY, Seriously!?"

Anyhow, moving forward... We all (Eric, MeMaw, and me) eventually ended up with showers back at the RMcDH. Truly therapeutic, we all agreed. Just stepping away and taking a deep breath of cold air on the walk over, and then washing away the stress from the previous day during a long, hot shower. I know mine was wonderful... Right up until the point that I called Eric to check in and make sure they'd given Kial his first oral dose of pain meds on time as requested before I left, and to ask if they got an order for the colace (stool softener).

When Eric picked up, I could hear the irritation in his voice and my son crying on the other end... "They still haven't gotten him his pain medicine." I was immediately tense, though I knew that Eric and MeMaw would absolutely handle it. I was just so irritated that I had just spoken with the RN and the resident and made it clear that we wanted to get him going on the PO (oral) pain medication Lortab (like Vicodin) straight away. At the time I spoke with them, K had gone 3-1/2 hours without anything and I was concerned that we needed to get SOMETHING on board now! Especially since PT was to come by and now help Eric maneuver Kial over to his lap for some Papa time.

Anyhow, by the time I got back to the hospital Kahlial was no longer out of his mind with pain. He was obviously worn out, but appeared comfortable. Happy to not walk in with him still crying in pain, and quite happy to hear we'd officially gotten a room upstairs. Bye-Bye PICU! Dr Mackenzie and his entourage of residents and fellows and his wonderful assistant, Colleen, were there and very happy with K's progress. They felt strongly that we might make it out of the hospital and over to the Ronald McDonald House by the end of the weekend. It all depends on keeping his pain managed as we and he try to adjust to movement in the halo. But we're on track to be home and settled for Christmas!!!

Kahlial is now drinking, eating a couple bites, and peeing (UP, UP, UP), gagging and near-vomiting his meds (DOWN), less painful with transfers (UP), itchy from one of the meds (DOWN), in a private room (UP, UP!) and has been playing with Mama's hair for comfort or watching Kung Fu Panda with Papa for the last couple of hours. Long post... Longer day, but UPs are in the lead!

Thank you all so much fo your wonderful messages. Many of you are making us get all choked up, but sure is nice to be teary happy, instead of teary scared or sad. Thank you again.