A Plan!

Drew and I after the banquet we went to Saturday night. After we ran through the rain to get back into the hospital!

Several of you have asked about the banquet that Drew and I attended. We enjoyed the time we were able to get out on Saturday night. We went to the Greenville Home Builder's Association 50th Anniversary celebration. It was very relaxing and nice to visit with other adults! We were surprised and excited when the builder Drew works for was named the 2009 Builder of the Year in the Greenville/Upstate, SC area. Congratulations, Todd! You can check them out at Addison Homes!

Grammy and Rebekah

So let me recap yesterday and then I'll move on to today's plans. Yesterday was kind of just a waiting game and was much less dramatic than Sunday!! GI was waiting for the surgeons to come back to check Rebekah's g-tube. The pediatrician was waiting for the surgeons to come back to check Rebekah's g-tube. The residents were waiting for the surgeons to come back to check Rebekah's g-tube. I was waiting for the surgeons to come back to check Rebekah's g-tube. See a pattern here? :)

Early yesterday afternoon, Rebekah's IV blew. (You know, the one we spent four hours getting in and finally had to put into her head?? Yeah, that one.) It took two nurses and myself about half an hour to unglue all the tape used in an attempt to hold that IV down on top of Rebekah's hair. It's a wonder that she isn't bald now! In the middle of that process, Rebekah decided to desat, so she went back on oxygen. We finally got all the tape off and decided to let Rebekah rest for an hour or so before attempting to place another IV (Her heartrate had been in the low 200's and O2 sats in the 60's during that whole episode). While Rebekah was resting, her nurse called and (successfully) begged the doctor to not order a new IV, as long as we could get Rebekah's full feeds in overnight. We were determined to get those feeds in even if we had to pump them in with a syringe! :) Okay, not quite that bad, but we were close to desperate.

Monday afternoon Rebekah had another x-ray done to check the position of the NG tube to see if it was still in position or if it was twisted or kinked. Through Sunday night, the feeding pump kept alarming that the line was occluded (blocked). The x-ray showed that the NG tube was about 2cm short of where it needed to be - it was just barely into the tip of the stomach and they like it to be at least a couple of centimeters in. The alarming pump was determined to be faulty as well, but we still needed to readjust the position of the tube. Rebekah was not at all happy about that fact and started to turn blue on us just to prove her point. We turned her oxygen up a little more and she was fine. So, she is now on 1/2 liter of O2 and will hopefully start weaning off a little tonight and tomorrow.

After all the waiting, Dr. Abrams (one of the pediatric surgeons) finally came late this morning. After a week of insisting that something is wrong with the g-tube, Dr. Abrams said he thinks the tube is "in the tract". Basically, when the tube is inflated (or not) it is sitting in the opening of Rebekah's intestinal tract called the pyloric. That's the problem. The solution? Replacing the tube with a different size and/or style of tube.

This is what to do when life gets too hard!

The solution, however, is not as cut-and-dried as I had hoped. Dr. Abrams feels that it is necessary to place Rebekah's new tube visually, which means that they will run a scope down her throat into her stomach to make sure the tube is inserted correctly and is in the correct place and is not blocking the pyloric. In order to do the scope, Rebekah will have to be under anesthesia and on the ventilator. UGH! That was certainly not the answer I wanted to hear!

The next step, now, is to wait for our cardiologist to come by for a consult. As we have mentioned on the blog before, anesthesia for a heart baby is very tricky. There can be complications far beyond the normal complications for a "normal" baby. Greenville Memorial is not equipped for pediatric heart patients, so therefore, there is not a pediatric cardiology anesthesiologist here. The question now becomes: do we do the procedure here, or is it risky enough to move to MUSC in Charleston? That's the answer we are hoping to get from our cardiologist. If we need to go to Charleston, arrangements will have to be made and hopefully we can have the g-tube placement and the already scheduled heart cath (Jan. 26th) during the same trip. Unless the cardiologist thinks differently, we would be discharged from Greenville Memorial and then drive to MUSC whenever they schedule us to be there. At this point, hopefully that would be sooner than later! While this is certainly no emergency procedure, it is equally not an elective procedure. It is best described as a "priority" case because if the current non-functioning g-tube were to come out, it would immediately become an emergency situation. Oh, I forgot to say that the balloon on the g-tube currently in her stomach burst yesterday, so the tube is now taped in so we don't lose the opening. Fun, fun!

Always such a sweetie!

So, as frustrating as this is, at least I feel like we have a plan and are working towards getting this all fixed so we can get back home. Rebekah is tolerating all of this with the sweet spirit that she always has. I have never seen such a good baby - and I've had five of them now! She absolutely never cries unless something is hurting her or she is hungry. We are so blessed to have this sweet little munchkin!

Nancy