Our day started at 4:45am which much to my surprise when my alarm went off that Danny was awake already at that time. Oh well guess I don't have to wake a sleeping baby, right? Everything went well as the drive started; no traffic Danny's watching the TV, I have my coffee, so far life is good......then I get a call from my husband trying to locate a T-shirt that Ms. Avrianna NEEDS to wear to school (or life would just end, don't you know), UGH. As I'm telling him wear to find this shirt, at 7am, my phone beeps in and it's the mother of the friends whose house Avrianna was to go to after school, as I didn't think I was going to be home in time before school let out. Well her daughter was staying home from school as she was sick, so obviously Avrianna wasn't going there. Dan was leaving after she got on the bus in the morning to go cut wood with the guys for the weekend, so I needed to find somewhere for Avrianna just in case I got stuck in traffic cuz I knew it would be close. So my dad was "on call" if I needed him to meet Avrianna when she got off the bus after school, phew! Once the daylight started to peek up in the sky and we got closer to Milwaukee I was not impressed with the amount of traffic that the highway was acquiring, ugh how can anyone want to live and drive in that crap every day. Fortunately we only were at a slow creep for about 2 miles, yea me.
At our first appt which is office the hospital campus at another clinic, the ortho appt, they wanted more xrays on Danny's hip and spine so I asked if they could include the KUB that urology needed later in the day for that appt. But if they couldn't no biggey as we needed to be in radiology anyway for a renal ultrasound in the afternoon. Much to my surprise they were not only able to include the KUB, they had an ultrasound tech there on site and they got it all done right there. Whoo hooo ~ it's going to be a great day! After the xrays were done we went right into a room and talked with the Ortho doctor. First words out of the doctors mouth was....."So where are you at with Danny's back?". Ok I'm very stumped right now as I wasn't planning on a back talk I thought we were going to talk about his hip (which by the way was confirmed a total failure, but we knew that already, UGH). So I come back with "Well were is Danny at with his back?", I thought that to be a better question. STOP RIGHT THERE.......if I could only retract that one simple question. The answer I got caught me off guard and I just wanted to throw up. 2010 was to a very boring year as 2009 ranked right up there with 2004 as being the worse years ever, but I'm thinking 2010 is going to be right up there too, sigh :(
Danny's Spine/trache/puck/hip hardware/and extreme gas filled intestines (yikes~ please don't "unload" here on the table Lil Man)Then I was shown this image......with the statement "grossly curved". Well I guess my Lil Man had a big growth spurt this fall with his back "going" with him. Less then a year ago his was sitting around a 52 degree bend in his back, in July the bend was about 67, and now he's over 80 degrees. This film was taken with Danny laying straight on the table, doesn't look like it on the film does it? His bend is ALL in the lumbar area scrunch'n and push'n things around in his tummy. Only positive here is the bend isn't in the chest area push'n on the heart or lungs. BUT it still needs to be addressed, UGH. We went through Danny's options and the more we talked the more I thought I was going to pass out, I'm just sick about it. We can do nothing and make him "comfortable" as symptoms arise ie: position issues, skin break down, difficulty with cares and pain. We can fuse his back with permanent rods implanted which will be one BIG surgery & recovery taking care of the problem, but his torso will no longer grow (staying smaller isn't the worst and he is already at levels of puberty as a 12 yr old so the growing should slow down?). Look at ALL the hardware he has inside him already (we set off the airport alarms just driving by them, LOL) so how much more do we need to add? None of these decisions are wrong, right, or easy...................this SUCKS! The feeling of helplessness and a failure just consumes you after you get this kind of news. Even though I know I'm a good mom, you can't help feel like the WORST ever. Especially when either way you know your son is going to go through hell! WTF ~ when will the insanity stop? They give your options and send you out on your way to function "normally" for the rest of the day. I was on pause after that appt, but still had two more to go, UGH! All I wanted to do was run far far away and hide with my Lil Man. But forward we went ..... and onto the next appts. We drove to the hospital from the off site clinic without getting lost, yea ME.
The urology appt went relatively well. The ultrasound confirmed that he still has a 1.19cm stone IN his kidney, and with that I mean growing in the tissue of the kidney NOT floating around in there. Really, why does that not surprise me. Danny do something text book, now that was surprise the hell out of me. So the doc just wants to monitor it every 6 months with an ultrasound and as long as it doesn't grow quickly, get infected, or cause Danny discomfort we are going to just leave it alone for now.
From there we went to the rehab dept to get his ITB pump refilled. We were early as after the last two appts I didn't want to do or visit anyone cuz I was just PISSY. Plus I was hoping to get in alil earlier and then be home for Avrianna when she got off the bus from school. So we waited 40 minutes in the waiting room for our appt to come, and then go by. 25 minutes after our scheduled appt we were called back to a room, for us to wait another 40 minutes in the room, before I came out LIVID to complain to the nurse and find out HOW MUCH LONGER! By this time the is no way I'm going to make it home for Avrianna so I called my dad to make sure he could be there, THANKS DAD!!! I swear the doctors think you have no other life when you take on the special needs mom role, I have all the time in the world to wait for them to figure out how a schedule works....believe me a let them know that too. I so can't wait for Danny's normal pump doctor to come back, we miss him so very much! Once I know he is seeing his patients again, I'm so out of the CHOW rehab dept! Danny got his pump refilled and we were so out of there. I did find out that the pump still have 42 months left on the battery life :) and that if we elect to do the spine surgery they will be re anchoring his catheter (this time properly) back up into the base of neck so he can get the effects he is suppose to get from the Interthecal Baclofen with possibly even a lower dose :)
Well that's alot for me to process at one visit, sigh. Oddly enough I was so engrossed in thought I don't remember much of the drive home. Except for when I'm 10 miles from home (trip is 200 round trip) the traffic on the hwy is at a stop. UGH!!!!!!!!!! Avrianna I'm coming, I promise! (mind you she is going through some serious anxiety with us going to CHOW because of this summer, she thinks "they" are going to keep her brother again) Poor thing!! A milk truck was broke down on the side of the road and they brought in another to pump out the milk from the truck to the other......really? It's F'n cold here ~ the milk can't sit in a truck on the side of the road till they move it out of the way?
I got Avrianna and went home to just go numb, well except for the headache that I had. We went to bed and all I hoped for was a better day today. This morning I woke up an emotional wreck! I get so disappointed in myself when I become a bumbling mess, but the tears wouldn't stop falln. After I watched Avrianna fall down on the ice walking to the bus stop by herself, I ran out, in my socks, to pick her up and wipe her tears. The bus pulled up she got on and I just unleashed my emotions. There it's done and out of the way, or off my chest.......now I'm back and in GO mode trying to find out what's the best decision for Danny. I've asking some questions I forgot to answer yesterday and awaiting the answers. I talked with his nurse and we talked with Dr Kasper in length when we took him in for his weekly labs today (plus 3 vaccines, can you say human pin cushion today). All the labs are not in, but the ones that have come back are "normal" ...... well Danny's normal, heehee. My gut says we'll be doing the fusion with permanent rods sometime in May. I'm not planning this surgery before our scheduled trip to Florida during spring break and it will work better then for his home nurses schedule too. We'll see what the next few days bring.
Thanks to all of you for your kind words, words of wisdom, and with helping pick me up when I was down this morning. I don't know where I would be without you guys!! It's time to sing off and hit the hay. Here's to better day tomorrow!!