It happened a lot faster than I expected.  Last week, we went to our very first G.I, after a small battle.  See, our surgeon already gave us the approval for surgery, but he wanted us to be sure of our decision, so there’d be no regrets.  Well, the day before, the Nurse Practitioner calls Louie and tried to finagle out of the appointment (ok, so it wasn’t on purpose but it ticked me off).  Long story short, she cancelled our appointment, without telling us.  It was pure chance that I caught it the evening before.  Then they tried to move the appointment to a different time, but I wasn’t having any of it.  At the end of our conversation, she told me frankly, “You know you’re seeing NP, not a doctor.” Yes, I knew this.

It was obviously an important appointment, since the doctor did indeed end up in the appointment with us.  We discussed the PH Study (surprisingly, normal…), his feeding habits, his recent gagging issues, his other conditions that would affect decisions regarding surgery.

In the end, we all agreed to do the G-Tube (feeding tube through the tummy).  It was scheduled the following Wednesday.  As in 2 days ago.  It was quite a scramble to get everything together. 

The surgery went well.  The first day was the hardest.  Typically, surgery sends you home the next day, but G.I. was concerned with re-feeding syndrome, which basically would lead to heart problems.  Surgery wanted to send us home the next day, even before the surgery, regardless of the note.  I made sure that didn’t happen, which got us switched to the G.I. team the next day.  They’ve been a lot more cooperative. 

I was nervous, scared, and excited.  I doubted myself even though I knew it was what we needed.  To take the pressure off, to have enjoyable meals, not worrying about calories.  But surgery is scary.

While we waited for him, I couldn’t help but feel this was only the beginning.  We’ve already been told by orthopedics that we need to do some tendon surgery for his hips but we postponed, wanting to give Botox a chance.  But mostly, we felt he was awfully young for such a procedure and would mark the beginning of many surgeries to come.

It’s a little unnerving to think how accustomed to hospital stays I am. 

Tomorrow, LJ will probably be discharged.  Tomorrow is also the 3 year anniversary of the first time we got take LJ home from the hospital, 2 weeks after he was born.  From the same hospital.  Just thinking about it fills me with mixed emotions.

A prayer was whispered everytime the chopper took off for the child they went to transport


A Week Full

Things have been hectic this week. I’ve barley had time to catch up on my Reader (down to 62), let alone catch up on my blogs. Here’s a quick recap of our hectic schedule this week:

  1. The long awaited Neurology appointment (Monday) Ugh. We’ll just leave that for tomorrows post, since I’ve got plenty to say on that one.
  2. EEG and Rehab appointment (Tuesday) Rehab was suppose to be on Monday but there was a schedule mishap that wasn’t my fault. These appointments went considerably well, especially with LJ on 3 1/2 hours of sleep. It was a long day for me. This one also ties into the Neurology appointment.
  3. Post op appointment (Wednesday) LJ’s eyes look great. No infections, despite him rubbing his eyes (I tried to stop him, but you can only do so much). He has to wear a patch over his left eye 1-2 hours a day to help strengthen that musle
  4. Occupational (Amy) and Physical (Mindy) therapist (Thursday) Amy was thrilled to see his head control improved. She figures it probably had to due with his lack of ability to coordinate his poor vision with his hands and head.
    Mindy showed us a few stretching moves for his legs and his left arm. She didn’t work him too hard since Amy had been there earlier. Next week, she’ll be coming at the same time as Amy for some co-treating. This, and the fact the the therapists actually talk to one another, thrills me.
  5. Louie’s birthday was on Tuesday. He had an extremely busy day, since he had taken off last Friday and Monday. I was so busy running around that I didn’t have time to bake him brownies or really do anything for him. I wanted to get him a Blackberry to help with his business but we’ve been having a few issues with his work so we want to at least settle into our new place before we start another bill.
  6. That’s right, we’ll be moving again, in October. Apparently our apartment complex has new owners and management and they’re trying to raise our rent 85 bucks. Not gonna happen since every time I call the maintenance man, I have to call the office at least two times before anything will happen. And the maintenance man’s word doesn’t mean crap. They left my A/C leaking all weekend and I had to bitch before someone would come clean our carpets. I wonder if mold got into the ventilation system because I’ve been sneezing like crazy. They said it wasn’t likely. AH.

Today, no appointments and hardly any work (that’s going to kill me come moving time). I’ve just been kickin‘ back and thinking about what to do this weekend. People have actually invited me out with them, and even though some Frenemies might be there, I’ve been considering it. I really need to get out after this week. And I need to do something for Louie. With all the love and flowers he’s been showing me lately, he deserves it. Anyone have any suggestions? (I already gave him something, Mean Girls style.)

Surgery Day

Everyone give him a kiss, the nurse said as she swiped her card and opened the double doors.

Louie leaned down and kissed LJ, who was fussing in my arms. Grandma and Grandpa (Louie‘s parents) followed his lead and bid their goodbyes.

And then, before I could kiss him, the nurse swooped him from my arms, taking his blue elephant with her and quickly walked away. I could feel the tears burning my eyes.

We had gone through check in and all the possible things that could happen, though we didn’t want to hear it. I didn’t want to have any bad energy. Our normally inpersonable doctor, was quite cheerful (probably because she was within her element). It was actually comforting.

We quietly made our ways downstairs, to the surgery waiting area. After settling in, we were able to distract our protective instincts by discussing the Olympics (and how wonderful Phelps is).

I texted my BFF, my mom, and my aunt to let everyone know. Aunt K called me to tell me we were in a prayer chain and to ask if she could talk to my dad. I told her I didn’t mind.

At 11:15, the doctor came to talk with us. The surgery had gone well and he was in recovery. She warned us his eyes would be red and he would have bloody tears. In an hour and a half, we could come up and see him.

Grandpa and Louie went to eat and of course, they called us up early. I didn’t wait for them, as I practically knocked doctors down on the way to the elevator. We stood in front of the elephants and waited for LJ to come out.

A nurse wheeled a bed through the doors and asked to see my band. LJ was lying there, covered by a thin, white sheet. His eyes were closed, swollen, and red. I shuddered, seeing the blood on his nose.

We went through another set of double doors, where there were curtains closing off sections for privacy. Inside the “room” was a familiar recliner and a single chair, with room for little else.

I sat in the chair and LJ was placed in my arms, IV line and all (too familiar). LJ fussed quietly as Grandma and I attempted to soothe him. When the nurse took his line out, he was able to be calmed.

He’s resting at home now. I’ve gotten use to the blood in his eyes and he seems to be handling it pretty well. I can already see that his eyes aren’t wandering, though he’s probably seeing double due to the surgery. I’m thankful, relieved, and excited. And maybe a little exhausted.

I want to thank everyone for there well wishes. It means a lot to me to have your support and we’ll take every bit we can get. That’s why I made sure to let you guys know, as soon as we got back.

Have a good weekend, all.

Tomorrows the Day

Tomorrow is the big day; the long awaited surgery day.

Yeah, it was suppose to be about a month ago. They decided they wanted to do it at the main hospital so, despite the inconvenience and my annoyance, it was delayed.

I’ve been excited all week. I can’t wait for him to be able to see things from across the room, not have to take time to focus on things, and, most of all, not be startled by people approaching him. Perhaps it will even move his development along.

But today, my nerves started to set in. I’ve tried not to think about it.

No food after 2 a.m. Clear liquids okay until 7.45 a.m. Arrive at 10 a.m.

Tomorrow will be a long day.

I’m sure it will be worth it.

In the Mood…

I know, I know, I said I would be working on my vacation posts, but I have a good exscuse! I’m waiting for the pics from the first and second day to come in. For some reason I decided to take the rest of the vacation on my digital camera but the first two days, I used the “old fashion” kind.

This week alone, I’ve had 4 appointments; Beth, Kim, Amy, and the pre-op appointment for LJ’s surgery. Crazy, as usual.

It was great seeing Kim. She is so sweet and understanding. Sometimes, she’s MY therapist too. She really gets that parent’s of special needs kids often need support themselves.

And there it is. I’ve come to terms with the fact that my son has special needs. I have, in no way, accepted it, but I’m starting to be okay with it. I still don’t think it’s fair, I still cry about it sometimes, but if anything, it’s made me more determined. This acceptance has led to many things, including an idea of developing a web site for special need’s parents. Basically, it would be a blog but somewhere parents can come and know they aren’t alone. I think it’s something I’d work on once I started taking classes for my web design certification. More on that, later.

Amy is nice. She adjusted her schedule so we see her Thursday afternoons, which is perfect. We’ve talked about adding on a physical therapist to his routine, but have decided to wait until after surgery. One step at a time.

LJ’s pre-op appointment went well. We ended up getting a general anesthsia appointment. I haven’t really talked about that much here, but it will come in his birth story which I’m working on as well. I got stuck because I couldn’t remember certain details that I wasn’t there for, so I’m going to ask Louie for help. I thought about asking him to guest post, but some things are easier for me to discuss then him.

My friend’s dad, that was in a coma, passed away. Most of his brain was damaged during the two strokes he had. I’ll always remember the things he did for me. He did a lot of things I wouldn’t necessarily approve of, but he did a lot more things with us then some dads do.

My BFF’s dad had a heart attack earlier this week. It was a mild heart attack, but most of his arteries are clogged. He is having quadruple bi-pass surgery today. They also found out he has Emphysema, but if he quits now, they expect him to be fine. He plans to, along with changing his lifestyle.

I’ve been praying for both their families.

But to end on a lighter note, I just noticed that for the entire day, including LJ’s pre-op appointment, my pants have been on backwards.

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