Saturday, July 14, 2012

Part 2

After the surgeon came out to tell me how well she did, I was over the moon happy, and the weight felt like it fell off my shoulders almost immediately. As I said before, I felt like I could *really* breathe again. She still had another hour to go in recovery, so we went to her room to wait for her arrival. The minutes seemed to drag on for hours on end, and I kept looking out the window to see if I could catch a glimpse of her being rolled down the hallway. After nearly an hour and a half wait, she finally showed up.

I had butterflies in my stomach. I was so happy to see her! She will still so highly medicated that she would only wake up for minutes at a time, but she knew she had surgery and she was happy to see all of her family members supporting her. The nurses were busy taking vitals, checking incisions and making sure she was doing okay, and I felt the immediate rush of emotions coming on. Her stoma was huge, the tube that now came out of her nose was even bigger than before , she was begging for water (that she was denied over and over again) and I really just couldn't believe that after only 2.5 years of battling Ulcerative Colitis, this is where we ended up. We were just THAT lucky.

The rest of the day is a blur to me (and I am kicking myself for waiting several days to finish this entry!) But I do recall she slept (alot) and itched herself non stop (side effect of her pain med iv), but she still looked better than she has in a reallllly really long time. (Believe it or not) But she made it through like a trooper, and was in no pain at all.

The morning following her surgery they took her off of the continuous drip of morphine in order to help wake her bowels and they put her on a pump. (She was able to push it every 12 minutes!) At first, I think I pushed it every 12 minutes and then I started to slowly space them out. They removed her catheter, she walked about 10 ft or so from her room and managed to stay awake for hours at a time. Less traumatic than I had invisioned for barely being 24 hours out from surgery. She has me awake from about 530 am to 630 just swabbing her mouth with water because she was so thirsty (very exhausting, btw!). Last night was tough. She woke up several times to use the restroom (since they have been pumping her with fluids 24 hours a day due to not eating and/or drinking) and the pain was so bad when she moved that she had to try and catch her breath between crying and freaking out. I felt horrible..watching her in pain, again, broke my heart! So I made sure every time I woke up through out the night from then on out, I got out of bed and pushed her button :) Made a HUGE difference the next time she had to go.

Today went very well, I am also glad to report! She cut her pain med intake in half and she was able to get out of the room and walk! Straight up and down (not hunched over in pain) , at a semi-normal pace and flat footed (she started walking on her tippy-toes.. but I think that was more or less from her poor little feet being so swollen from all of the fluids). She was flooded with even more gifts from her Daddy and sissy when they showed up, and we spent a majority of the day playing various games. She finally had her NG tube removed, and the Dr allowed her small medicine cups of ice chips every 4 hours (yes, one of those 10 ml (?) cups! ) Tomorrow morning we will be moving on to clear liquids!

So in all honesty, the past day or so has been far less traumatic than I thought. This whole ordeal will be hard to become accustomed to, but we will finally have Alexis back. She was unhappy and extremely unhealthy and that's just not how a 5 year old should feel. She is so tough, and its truly unbelievable just how much strength she has.

I know there are probably a  million and one things I am leaving out, but like I said-- waiting to finish this post was a bad idea, and I have managed to already to forget so much (or I blocked it out, who knows?!) The most important thing, is Alexis is doing well. She will accustom to her ostomy nicely and once she heals, we will discuss step 2. Since this surgery (and prep!) was so hard on her body, we may wait a little longer than the 3-6 month time frame.. who knows?

Thanks again for all the support from all of our family and friends, my page views have sky rocketed over the past few days (almost 400 in what.. a week or so??)!!! I will update tomorrow on any upcoming progress!

1 comment:

  1. Wow..what a in the same boat almost as 5yr old daughter was diagnosed at age 3 with crohns..last feb after remicade stopped working,she got so very sick and ended up in ccu for two months following her colonoscopy,dr could not promise us he could save her colon,and had told us if it was just uc that he would immeditely remove entire colon,but biobsies came bk once again for crohns,so he said he would not remove it because in long run she would have more problems..we had prayed for uc..anyways she is now on methotrexate and humira injections and another hand full of meds at home,and was on steroids for months..she has so many side effects from meds but tryn to get this disease in happy your little one is doing ok at the moment..she is precious!!!