Today's surgery went well, Olivia is resting comfortably and we're happy to be back home. It was a long day though. Tonight I didn't even try to put her in bed in her room by herself. After everything she's been through I just couldn't do it. She's happily sleeping in my bed.
Initially Olivia's surgery today was to have her triple lumen Hickman catheter replaced with a single lumen catheter. I know that there was some discussion back and forth with the nurse practitioner and Olivia's primary doctor about going to a single lumen catheter versus a port. A port is very similar to her previous tubie but it's under the skin. Ultimately we knew that Olivia would be going home with a port and it will be in place for at least 9-12 months post transplant. Olivia's primary doctor thought that we weren't quite ready yet for a port.
When we got to pre-op this morning at 6am we found out that Olivia's surgery had been bumped back a bit due to another emergency. Olivia was happy and content this morning and we finally got started around 8:30 this morning. The anesthesiologist came in and went over her plan. She had reviewed all of the notes in Olivia's file including her previous "difficult airway" notes from the hospital at Ft. Lewis and she'd also seen the notes by the anesthesiologists here at Duke. I felt comfortable that the anesthesiologist and her team were prepared and ready to go.
The surgeon came in to go over the procedure and then the problems began. He was actually the same surgeon who inserted Olivia's tubie 3 and a half months ago. As he started explaining his plan I became more and more uncomfortable. When the procedure had originally been explained to me I understood that they would "re-wire" her tubie by sliding a wire in place then pulling out the current tubie and replacing it with a single catheter. The surgeon explained that he would first try to insert a new tubie on the other side of her chest and if that was successful then he would remove the old tubie. His backup plan would be to "re-wire" the original tubie. I asked about how that would affect things when they go to transition from a single lumen to a port in another 6-8 weeks. The surgeon had some realistic questions, if that was our ultimate goal why not move to a port right now. All very valid questions and I understood his perspective as a surgeon. I paged our nurse practitioner who called me back, we discussed things. The two attending physicians (Olivia's primary doctor and the surgeon) spoke with each other. Ultimately the decision was made to give Olivia a port. The best case scenario moving forward is that Olivia will continue to do well and the absence of a tubie won't affect her treatment. The worst case scenario would be that she does end up needing a tubie and they would have to go in and do another surgery to place another tubie. From my perspective I think that the port will be better for us. I don't have to do anything to maintain her port like I did with her tubies. She will be able to take a regular bath with her port, she'll be able to move around easier and there's no worry that a port could get pulled out. She can receive antibiotics, blood, platelets, and even IV nutrition (if that becomes necessary) through her port. The bad news is that they access a port with a needle and after all Olivia has been through she's not fond of needles. Hopefully it's something that she'll get used to, she didn't enjoy having her blood pressure taken at first either but now she's a champ!
Ultimately I'm glad that everything worked out. I wish that Olivia's doctor and the surgeon had spoken prior to today. Once we got home I realized that I didn't have anything to give Olivia for pain. When we were in the recovery area I had asked the nurse about pain management and she said we would discuss that when we went over the discharge instructions but then we never got to it. Olivia did have some fast acting pain medication as she was waking up and then they gave her a dose of Tylenol. Olivia was happily eating a Popsicle as we left and I think that she was doing so well that we all forgot about future pain. When we got home Olivia took a nap but then woke up in some pain. I didn't have anything for her pain here other than Tylenol and that was just not cutting it. I called the PMBT clinic and fortunately they were able to call in a prescription for Tylenol with Codeine. It made a huge difference! Olivia was up playing with her puzzles and books after dinner. I took some before an after pictures and I'll try and post them tomorrow.
Thank you for all the prayers and good wishes. I'm glad today is over!
If you're just dying to know more about tubies and ports here's a link to a brief article from web md that seems to explain things: http://www.webmd.com/a-to-z-guides/central-venous-catheters-topic-overview
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