CHLA Update - 6/16/09

We've been on a roller-coaster with Ryan for the last 8 days.

In an attempt to heal his rash, we were suggested to administer an enema and introduce flaxseed oil to his diet. Additionally, we were instructed to begin dilations (again). Maybe too much at one time. Last Monday we were sent into a bit of panic:
- Ryan struggled all day in daycare (6/8) and had frequent stools
- His diaper rash went from zero to OH MY GOD (Personally I think it was the effects of the flaxseed oil).
- Jeff was on high alert and full panic when I arrived home which freaked me out - therefore I made a panicked phone call to Ryan's surgeon and things happened very fast.

Tuesday - Ryan's surgeon made a special trip into the office to see Ryan and I. Ryan's surgeon was recommending a temporary colostomy (6-12 mo) but wanted us to get a second opinion from another collegue at CHLA. (By the way.. this was pretty devastating news to me)

Friday - We had an appointment at CHLA for a contrast enema (X-Ray)
Being witness to the X-Ray, Jeff and I both noticed something abnormal about the path of the contrast. Immediately following the procedure, I was making phone calls to get feedback on what we saw.

Weekend - No word from CHLA. Ryan catches a cold. Had to call the pediatrician over the weekend to get medication recommendations. Turns out you can actually give a baby Robitussin. (As long as your doctor says it's okay)

Monday - Got a phone call from the nurse at CHLA. She reported to us that there was an abnormal reading on the report. Not being one who likes to be caught off guard with "news", I made phone calls to the surgeon's office for clarification. He confirmed that there was part of the intestine that appeared to be twisted on itself, but that this was NOT a concern. However, the report (in his mind) was missing the one thing he would have wanted it to say: Was there (or was there not) a narrowing? He wouldn't have access to the actual film until Tuesday.

Tuesday (today) - We were seen by "the collegue". After reviewing the X-Ray/report and doing an exam, his recommendation was NOT that of Ryan's surgeon. Instead he want's us to stay the course (less the flaxseed oil). In his opinion, everything Ryan is experiencing is "normal" post-surgery and the X-Rays showed nothing of concern.

Anyone who has ever been seen at CHLA knows that things NEVER happen this fast. Phone calls were made and favors were called in to get Ryan seen and treated in an extremely short timeframe. Because of the speed in which things were happening, I was alarmed that something "bad" was on the horizon. Today we were soothed of this fear.

I am so thankful that the right team of doctors are assigned to Ryan. (Thank you GOD for this team). Moving forward, we now know that the expectation for care is another 12 months (or more). It isn't going to be an easy road. There will continue to be days that will seem too hard to handle. I look forward to the day that we look back on all of this as a distant memory.

Love, Positive Thoughts, Prayers.