Check out the Zombie at 6:30 am...
Well, The big procedure of work up is complete. Bella had her CVC, or Hickman Line, placed in her chest today. This will be kind of like a permanent IV where the doctors and nurses will be able to easily draw blood, and administer medicine and nutrients. The line has two different valves that connect to one "tube" that is divided into the two "lanes" of traffic. This one tube goes into the main coronary vein and sits practically in the heart itself. It is a large apparatus, and due to its proximity to the heart, risk of infection at this site needs to be closely managed.
Let me break the day into the Good and the Bad like I used to, since there was both. That way, I don't concentrate on only one.
Somebody does NOT like to be up at early thirty in the am!
First, The Good:
We met Dr. Jakub Tolar today! YAY! For those that don't know Dr. Tolar, he is the chief transplant doctor working with Dr. Wagner on this study. We did not meet him during our original consult, but have consistently heard glowing praise from every other EB BMT family that has gone ahead of us. He visited us in the preop room and I had the opportunity to work with him in the O.R. (I'll get to that) It was a real treat. He is incredibly professional, detailed, and yet completely invested in you the parent, open, and approachable. He wants to hear from me via email EVERY NIGHT for a status on not just how Bella is doing, but how we are doing as well. That ROCKS. The biopsies and blister tests went extremely well under his direction, and while everyone was hanging on his every THOUGHT in the O.R., there was not a trace of ego in the room. He appeared to just be a man in scrubs among other men and women in scrubs.
Throughout the following, Bella was sweet and adorable, though a little sleepy. The anesthesiologist said this was one of his "Top 3" experiences with an Epidermolysis Bullosa baby and her family. I'm sure he says that to every family.
Two particular items of note for EB families:
1) In case you didn't already know this, there is a relatively easy way to get an EKG without having the leads pull skin off. First cut the adhesive portion of the leads off. Then, use a dollup (you know I'm in the midwest now) of 1% Hydrocortisone cream on the lead to connect to the body. then use a piece of mepitac to secure to the skin over the top of the lead.
2) If you need a pulsoximeter attached yo your baby or small child's hand, have them put duoderm on the inside of the bracelet facing inward to cover the adhesive material. Leave 1 centimeter at the end exposed so the pulsox can adhere to itself once wrapped around the finger.
Ali hanging out with the RMH dog Jerry is definitely good...
Ronald McDonald House goes in the good column today for sure. Today, Ali had Acting/Drama Camp from 1-4. (I know, I know, as if she needs any instruction in this area...wonder who she gets THAT from) Then, we played games and she wanted to exercise, so she asked me to take her to the exercise room. She walked on the treadmill, rowed the rowing machine, basically asked to try every machine in there to get out the rest of her energy. She really looks up to mommy and how dedicated she is to exercise. Then, after the dinner the was made for us, there was a therapy dog, Murphy, that came by, then there was a craft time for making cards, followed by open play in the playground till bath time. Man, she went down EASY tonight! Thanks Grandma for watching her so we could be in the hospital with Bella!
I wrote recently about the lesson I learned from Bella's birth. The lesson was that you can create and generate your future as much as you like, but in the end, you cannot control it.
Well, let's just say that today, I had a bunch of opportunities to practice owning what I learned.
Without going into a laundry list of "what went wrong today," We had several things either happen that were directly opposite of what was planned, or several things that didn't happen that WERE planned.
In San Diego, Ang and I were able to go into the O.R. and do dressing changes. Here, despite my repeated efforts to the contrary, only one of us was allowed into the O.R. Ang and I generate some serious synergy when we work together. It's not that we can't do the work alone, it's that it's more than doubly good when our teamwork and creativity is allowed to combine.
This was especially important today as we were going to have to wrap Bella's Hickman ourselves, and spent a chunk of yesterday in training and on the phone with other BMT parents about best practices for this. Well, after all that, it was just me in there. The dressings went fine, but it took some second and third tries in the recovery areas before we were happy with the initial strategy for managing this giant tentacle sticking out of Bella's chest.
In addition, the way the line was placed left no room for a particular technique the doc who placed the line, Dr. Acton, encouraged us to employ, which was to coil the extra slack in the line before covering it so that if it gets tugged, the slack takes the trauma, not the delicate umbrella holding the line in under the skin. Well, when I walked into the O.R. after he was done, he left me exactly NO SLACK whatsoever in the line. I now had nothing to work with to ease potentially "unplanned exits" of the line. Not only is there no slack, but it was placed so close to her left armpit that the line just hung down between her arm and torso. No big deal except it has two really sharp clamps sticking out of it that will just shred her upper arm and torso unless it just gets tugged out the first time she reaches across her torso with her left arm.
On top of that, the dressings we ordered in advance to cover the line were not present, so we had to gerry-rig the dressing with leftovers. NOT part of the plan.
Then, the line got a clot in it. It took another 3 hours of trouble shooting and drug administering before it got cleared. They told us it was a 2 hour procedure, but that we should really plan on more like 3 or 4. Well, we checked in at 6 and walked out a 4 this afternoon. 2 went to 4 went to 10 hours just like that.
All's well that ends well, because we got our hands on a catheter pouch that wraps around Bella's torso and velcro's safely in the back. In the front there is a small pouch with another piece of velcro to help keep the catheter protected inside it. I'll take a pic tomorrow and show you what I'm talking about. Bella is out cold and I don't want to disturb her. So, the line is safe, and she is safe sleeping with it for now.
Wiped after 10 hours in scrubs...
Providence Story of the Day:
Remember these? :)
This is really two stories, one of which I forgot to share a few weeks ago. It is perfect that I forgot because when combined with what happened today, its power is exponentially increased.
Okay. First story: For those of you that don't know, I am a huge soccer fan, and still play as much as time will allow me to. It is the diversion that my brain needs to switch off for 2 hours at a time and take a break from the enormity of caring for Bella. For the 2 hours that I play or watch, I am totally focused on the game, in the zone, whatever phrase you want to use. When I finish, I feel totally relieved of any stress I brought into the experience. This is the true meaning and purpose of recreation, or re-CREATION. I feel alive, renewed, rejuvenated, even if I pick up a knock, strain, or "boo-boo," as Ali says, along the way.
I play soccer with a group of Persian men in Irvine on Sunday afternoons. I started playing with them a month or so before Bella was born at a particular field at a particular time. Then, due to dealing with Bella, it took several months to get back out there. Well, when I finally returned, they were gone! I was crushed because I never bothered to get anyone's phone number, so I lost the group. This really bummed me out because Sunday afternoon is the perfect time for me to play with my schedule, and it's pick-up, not league, so if I miss a week, which I frequently do due to travel and work, nobody ends up in an uproar. Anyhow, I returned home dejected. About 8 months later, I ran into one friend who I used to play with and one of the guys from that group! They had moved to a new field only a mile away, but you cannot see the field from the main street so when I went looking for them, they were hidden! I resumed playing with them this spring much to my delight.
Then, it happened again. A few weeks ago, I showed up at the field, and they were gone. Again! I just shook my head because of how long it took to find the group last time. I started driving to the old field where I first met them, and on the way, I said to God, "Please? Please let me find them. I really don't want to lose these guys; they are the medicine I need!" I drove to the original field. At the 4-way stop sign next to the field, I could see plainly they weren't there. I looked to the car at the stop sign waiting to cross from my right. Then, I looked again, completely amazed, because in the driver seat is one of the guys from the group! In fact, he and I played side by side as central defenders just two weeks prior! I rolled my car into the intersection, and rolled down my window and took off my sunglasses so he would recognize me. He did, and rolled down his window as well.
"Where are we playing?" I ask.
"Oh hey! What's up dude? We are at IVC, bro! (Irvine Valley College)"
I remember that this was the back up field HE told me about just 2 weeks ago that completely slipped my mind. However, he was driving northbound, away from the field.
Here's where it gets really interesting...
"Well, where are you going then?" I ask quizzically.
"Bro, I'm not even playing today, I was just on my way home!"
Over 200,000 peeps call Irvine home. It spans about 65 miles. What are the odds of bumping into THAT guy on THAT corner at THAT time? Someone ask Richard Dawkins to get back to me on that one.
On Saturday, my friend Logan accompanied me to a local brew pub to watch the USA play England in the World Cup. The bar hosted a big outdoor BBQ complete with beer tents, burger tents, a stage with bands, and a huge jumbo-tron to watch the game. Never mind the inside of the pub was packed tighter than a general admission rock concert. As we were in the burger line, I struck up a conversation with a guy next to me in line. One of the prayers/intentions I put out there before going was that since I would be in a tight mix of like-minded peeps, perhaps I might "bump into" someone who might lead me to some local soccer playing here. (Better believe I brought all my gear to MN) Anyhow, I start talking to this guy and he asks me if I play.
I say, "Yup. Goalie and central defense." (most guys HATE playing these two spots and feel penalized if they have to... me, on the other hand, I love these two positions.)
He looks at me a little shocked and says, "Me too! Wow, that's weird." I thought so, too. Anyhow, we shoot the breeze for a few more minutes and then split off on our own ways.
Fast forward to today. At the end of the day, as we are walking out the lobby, I told Ang I NEEDED Starbucks and that we are making a much needed detour before walking home. She asks me to pause as she stows her jacket, and in doing so, we slow down our trot enough for me to spy, around the corner, a milk thermos, much like the stainless steel ones you see adorning the condiment bar at Starbucks. Immediately, I realize there must be some lobby coffee bar, so I round the corner thinking I'll just get my coffee there, and who is standing there next in line?
Yup. The guy. Today, he's all decked out looking all professional. He turns and looks at me and we stare for a second knowing we know each other. I walk up and say, "Were you at Nomad (the pub name) on Saturday?"
"Yeah man, wow! Hey, how's it goin'? What are YOU doing HERE?"
I break it down for him and give him my card. I tell him about Bella and that I am seriously in need of hooking up with some soccer to keep me balanced through the journey. He tells me his name, Maurizio, and says he'll ask his coach if I can come practice with them at least, and if nothing less, we can hook up to kick the ball around.
Now, I don't even know how to do the numbers of probability on this one.
Anyone get the sense that God is listening?
I am unapologetic in my love for this mostly foreign game to fellow Americans because I know that it is good for my physical and mental health. God literally knows this and knows my heart. He knows I don't ask for much, but to be able to run and cheer like a kid once or twice a week. This, he can do. I know it just makes him smile to see me so happy. I know it just makes him smile when he sees ANY of us happy. Joy comes in many shapes and sizes.
What brings you joy? Please share with us in the comments box!