Date Sent: Sun, Aug 16, 2009 at 9:50 PM
It's amazing how sometimes when you think that you just can't take any more ... when you're eyes are all puffy and red from crying your heart out ... when you're discouraged by the seemingly endless set-backs ... when it looks like daybreak will never come - sometimes God says "Okay, let's make this one easier." I'm SO GRATEFUL that was His decision this past Friday! I typed and emailed update #49 on the car-ride to Pittsburgh. We were headed into the ER at Presby, and I was staring down the barrel of yet ANOTHER hospital stay. I was very discouraged - discouraged that the local (excellent!) big hospital didn't take my problem seriously - discouraged that all the elements were in place for me to get septicemia again - discouraged that I was about to separated from my family again - discouraged that I was about to be stuck alone in a hospital - and discouraged at the impending pain of several repeat procedures that I had just gone through less than two weeks before.
We arrived at the ER, and I took a deep breath in and out. I wiped one final tear from my eye, and having mustered up every bit of strength (as little as it was) I could find within me, I walked bravely through the doors (so grateful that Aaron was by my side). I felt a little better within the first 60 seconds - the person who signed me in had me come straight back to be looked at (I didn't even have to sit in the waiting room). They immediately explained (before even looking at it), that if the cuff really did come out, then I would need a new one - no ifs, no ands or buts. It was SO REASSURING that we were no longer the only ones concerned about the potential gravity of the situation. It wasn't an emergency (yet), but could have become life-threatening at any moment. If it slipped out more and the medicine wasn't going in properly - I wouldn't be able to breathe. If bacteria got in the (now gaping) hole in my chest - septicemia would set in again. And FINALLY - twenty-four hours after the cuff pulled out - people were scrambling to fix it!
After a quick x-ray, and very short (very fast) visits by a couple doctors, the ball was set in motion. About 30 minutes after walking in the door a doctor (GOD, BLESS HIM!) decided he'd stay late and replace it immediately - AS AN OUTPATIENT!!! So, I was whisked upstairs while Aaron scrambled to find a hotel and get oxygen delivered to it so I could sleep in a non-hospital bed that night.
Since I've had so many catheters (hickman and IJ), so many swanns, so many heart caths - the doctor decided not to put me to sleep. He looked at the scars on my neck and chest and said that I've been through so much that I should be able to handle it. (This also saved time, so he didn't need to track down anesthesiologists, etc.) I was shown a couple different catheters, and allowed to pick which one I wanted, and then was given a quick run-down on what would happen. He was basically going to just pull out the catheter and put in another one along the same track. ... And then it was MY turn to talk about the process. Since it was decided NOT to give me a temporary line for the Remodulin infusion, I was "simply" going to turn off my pump for the procedure. [I will interject here that if I hadn't switched from Flolan to Remodulin in May, this would NOT have been possible - l would have died on the table because the medicine wears off so quickly. So - here's yet another reason God had me make the change to Remodulin!] So, since none of the doctors or technicians in the room knew about Remodulin (other than recognizing the name), it was up to ME to walk THEM through the change-over process. So, I told them what size syringes (etc.) were needed and what kind of time frame I could go without medicine with me staying out of the ICU. I talked about what needed to happen before he started the procedure, and what needed to happen after he was done with his part. Once everything was together we started - and I turned off my pump. I think that act alone raised my blood pressure and pulse, and lowered my oxygen sats. It's been thoroughly ingrained in me that I DO NOT DISCONNECT FROM THIS PUMP. But I had peace - so I did it.
About 30 minutes later he was finished with his part (I'll spare you the details) and it was my turn. I walked them (three extra people came in the room for this part!) through the process of priming the new catheter that was in me with the correct amount of medicine (a little too much could have "coded me" and sent me to the ICU - that happened once a year ago on accident at that same hospital!). Everything went smoothly, and they were all impressed at my medical knowledge (including the right terminology of some pretty technical things related to the process). My response was "I don't know a lot about a lot, but I do know a lot about me." Once the pump was running again, I sat up and was wheeled back to the ER where Aaron was sitting (and looking SO INCREDIBLY NERVOUS). But there I was - alive, smiling, talking, walking, laughing, and the medicine transition had obviously gone well. (After all, I was back in the ER, not the ICU!)
So, the Attending doctor of the ER phoned the on-duty doctor who works with my specialist to let him know that it was all done, and make sure it was okay for me to go home. His response was "They took care of it TONIGHT?!!? I can't believe they squeezed her in!" (The surgery schedule had been over-booked ALL DAY!) But he gave his blessing, and I was discharged! If I wasn't so sore from the procedure, I think I would have danced a jig on the way out the door! I felt SO INCREDIBLY RELIEVED that the danger was over. Aaron was smiling from ear to ear! And we were both starving! So - we got dinner, and checked into the hotel, and just after 10:30 the oxygen was delivered. Sigh - I could sleep! WE could sleep! The next morning we got some personal business done, and after lunch left to drive back home. What was supposed to be a six day ordeal took only about 24 hours! PRAISE GOD!!!
I'm still recovering. I'm still sore. I still haven't gotten a legitimate shower. BUT IT'S FIXED AND I'M HOME!!!! The doctor who performed the procedure told me that (because of lots of details about what happened), it's going to take AT LEAST A MONTH for this to completely heal. But at least it's FIXED!!! The original one was (to quote Aaron) "a hatchet job." The doctor explained to me why it came out, and what he was doing differently to make sure this one stayed in. This one still has the same inconvenient placement, but looks SO MUCH BETTER, AND SO MUCH MORE SECURE. I'm still grieving the ugliness of the "hatchet job" scars. But I keep trying to remind myself that scars are reminders of God's HEALING, not just of painful wounds.
Thank you SO VERY MUCH for all of the prayers, emails, cards, phone calls, Facebook posts.... God was gracious to me once again. This time what could have - SHOULD HAVE - been a long-drawn out painful ordeal, ended up being a drive-thru ER visit. I've been so blessed!
A very relieved,