Saturday, October 27, 2012

It's been so long...

Day after her operation
..and I apologize! With the Phoenix article on Miss Alexis coming out soon, I have got to make sure I update regarding her latest surgery. I am hoping her story reaches thousands of people-- more so those parents who are in the beginning stages of the surgical side of treating their child's IBD. I still manage to get an email about once a week from  parents who stumbled across my blog . It's overwhelming hearing them compare our feelings and listening to them say things that I too had said myself in the beginning of all of this.

So, again.. my email address is I know I posted it a few entries back, but I wanted to post it again for any new people who come across my blog.

So, here we go.

My husband reading Alexis her cards
Prior to D-Day, I had spoken with Alexis' surgeon and decided to be apart of a study he was conducting. Basically, some surgeons think a bowel prep is necessary, while others do not. The bowel prep itself is awful. NG tube down their nose that pumps their tiny bellies full of medication that eventually flushes them completely out. I remember the nurses bringing in 2 gallons of this crap, and I was flabbergasted.  "Your really going to use ALL of that?!" The hours following that statement were almost as bad as the surgery itself. I went through the details of the actual prep in one of my first few blog posts.. but it was no fun. I was praying that we would be selected to come in on the day of surgery with absolutely no bowel prep (well, no eating after midnight.. but that's easy!). And, we got exactly what we had wished for: no prep! Let me tell you.. it made the thought of Alexis' going into surgery a million times easier. No sense in terrorizing ANY more than necessary.

We arrive at Children's Hospital around 6:30 am on 10/4/12. My husband, Alexis and I head straight up to the surgical wing and wait an hour to be called back to the prep room. Our surgeon came in, went over everything we needed to know (and answered all 5,000 questions I had) then the anesthesiologist came in and went over all his information. Shortly after, Alexis was wheeled away. Again, I was left with a pit in my stomach and had to fight back the tears. It was hard, as letting your child go into ANY operation is scary, but I felt more comfortable than I did the first go round.

This operation was scheduled to take roughly 6 hours or so. Great. TWICE as long as the first one. I felt like I barely made it through the last time, I didn't know how I would manage to stay sane for that long. Kyle and I went off to the cafeteria for some breakfast. We made it back up and waited (and napped) and waited until finally her surgeon came out.

5 days post op
Everything went according to plan, and he even made it out in an hour less than expected. Alexis was doing great and they had absolutely NO complications with her surgery. He explained to us that he moved Alexis' ostomy higher up in the small intestine and she now had a diverting loop end ileostomy instead of her end ileostomy. I would go into detail to explain the differences, but I tend to use random medical jargon that most people don't understand (unless you are a fellow ostomate!) I am hoping to find a picture to include in this entry as seeing it with your own eyes tends to make more sense. Her ostomy previously was thicker, and stuck out about 1 inch from her stomach, now it is about .5 inches in diameter and sits almost flush with her skin. Her surgeon went through all of the same incisions  so no additional scarring. I can almost guarantee that when she becomes an adult, they will be barely visible! They are already pretty small in size. Scarring may mean nothing to you or I, but I don't want her to feel uncomfortable as she gets older if she wants to wear bikinis etc etc. She is beautiful all the way around tho, so hopefully some scarring doesn't bother her.

Back to the surgery..

Alexis was pretty medicated on the day of the operation and the day after. It seems all she did was sleep. I was grateful because I can only imagine how uncomfortable she had to of felt. She was on automatic suction, and had a catheter-- so she didn't move out of her bed until about 2 full days post op. This operation was twice as long as the first, and it seemed to take twice as long for the anesthesia to really wear off.  I made sure she remembered to push her pump pretty often (she was also on a continuous drip) I was doing everything in my power to ensure the pain wasn't coming through.

Recovery wise, things took alot longer than I had anticipated. I went into this surgery, expecting the recovery process we had during the first operation. Alexis went in on a Thursday and released on a Monday morning. Her bowels woke up almost right away and her pain was so well managed she was only on a pain pump the first 24 hours or so. This time around, Alexis had an NG tube hooked up for a week, as well as the pain pump. Her bowels woke up post op day#6 and the NG was removed on day 7 in the morning (thank goodness, otherwise we would have had to do tube feedings) I tried so hard not to rush the recovery process, but honestly, I was going a little stir crazy..and I missed having my entire family under one roof! It was rough on all of us, however, looking back I know we were right where we needed to be.

Now, of course we had to run into some problems. Alexis had been on a strong antibiotic after surgery and she developed a yeast rash ALL over her backside. On top of that, she started running fevers out of no where. We were concerned of infection so the Drs ordered a fever workup which included: a chest xray (to check for pneumonia), a urine sample (to check for a UTI (very common after having a catheter placed) and blood samples to check her white blood cell count (which is an indicator for an infection). Everything came back normal except for her blood samples, but her wbc was only slightly elevated.
Infected IV site. Notice the burns? !

Then, a nurse came in to administer IV Tylenol via an iv port on Alexis' left hand. She had 3 ivs placed during surgery and the were only constantly using 1. Alexis was throwing a fit when they flushed it, however the nurse assured me everything was fine since it "flushed okay". So she hooked Alexis up to her medication, and left the room. Alexis was very upset when the nurse left and I went and closely inspected the site. (it was under the clear plastic bandages-- so I didn't have a good visual of it.. I was mainly checking to make sure her arm wasn't swelling!) No swelling. I could see around the iv tho, and it looked pink and I just knew something was wrong. I called the nurse in and told her to remove the iv. We did and sure enough, once everything was removed, you could see that the iv had been bad (and who knows for how long since it hadn't been used!) Over the next several hours, the injection site filled with puss, her arm swelled up and red splotches covered about 80% of her lower arm, and her arm itself was very warm to the touch. She also developed blisters (tissue underneath had burned, and it made its way to the surface). They were worried that she had a possible blood clot, but the ultrasound crew was so backed up, we were forced to sit and wait. I placed a warm cloth over her arm, and over the next several hours, the redness and swelling went away! A huge welt appeared out of no where the next day too. We continued with the warm compresses, and she was started on another round of antibiotics, and the fevers finally went away for good. I was very angry this happened, but it was a relief to know that the infection wasn't on the inside. Finally felt as if we were making real progress and we could work on getting out of there!
6 days post op. Craft time with little sis!

I really wish I would not have waited so long to update. I am jumbling my brain trying to remember certain details, and I am at a loss. So for now, I think I will call it quits. As I remember, I will come back and edit, or post more details in a later blog. Alexis' surgeon wanted to preform her take down 6-8 weeks from this operation, however, I requested that we hold off until the beginning of January. She has already missed a ton of school, the holidays will be upon us (as well as her birthday and her party!) and my husband and I just can't afford another week of no income.

My husband has an awesome job, and makes more than enough to allow me to stay home with our kids. However, there is no paid time off. He was forced to take an entire week off a few weeks prior to Alexis' surgery, and then he took a week off to be by Alexis' side after the operation. We pretty much blew through our savings during that time. In no way are we struggling, things are just alot tighter right now. It stresses me out because I am used to having a cushion to fall back on, and being so close to the holidays and all.. doesn't help. But we will make it through, Christmas will be amazing, as well as Alexis' SIXTH birthday. Financial woes just seem to follow anyone who is struggling with a chronic disease. I pray that what we are doing for Alexis now, secures her future even more. I hate the thought of her dealing with this for the rest of her life.. I don't ever want her to wonder "How am I going to pay for bills and/or the things I need on top of  medication and/or surgical operation". I would give up everything I had before I let that happen.

Other than that, things have been going great. Alexis is 23 days post op today, and things are great. She is back in school and back to learning her dance routines in drill team! We also learned that we are having ANOTHER baby girl in March, and although I had hoped for a boy.. I am extremely excited. :) Alexis can't wait to hold her and she is extremely excited that she will always be the "biggest" sister :) Life has thrown my family quite the curve ball, but we are back on track now. Once we get Alexis through this next operation, I pray for nothing but smooth sailing and distant memories of IBD after that.

Thanks for checking in. XO

Tuesday, October 9, 2012

Post Op Day 5 (I think..?!)

My days seem to be running into each other!!

I promise I will update as soon as I find the time. Things have been hectic, and honestly when I am not tending to Alexis-- I am exhausted and just want to sleep. She is doing better and we are hoping things start to improve for her. I have ALOT to write about, so keep checking back!

Thanks for all of the love, thoughts and support <3 p="p">