To continue on with the weekend near-miss, we had a relatively normal dialysis on Saturday, but Sunday began to experience problems.
About 5 pm Sunday we started setup and access. We got access on the first port with no problems, but ran into trouble on the venous port. Both Aida and I made attempts to cannulate the port but, after trying 5 times with new needles, we had to back out of the procedure and skip dialysis Sunday.
Thankfully Monday was a day off from school. Monday morning we set up again and started with the arterial port with no problems. But once again we ran into problems accessing the venous port.
Christian was really not taking this well at this point. From the Sunday attempts, we had induced a good bit of trauma to the arm and it was slightly swollen and painfully tender to begin with. After our 3rd attempt we got on the phone with the hospital and tried a few things, but it was still not accessing.
After two more attempts, we began making plans to go back to Houston because now we were on our second day of no dialysis and our "skip" day had only been the previous Wednesday. That would be 3 out of 6 days with no dialysis!
It was about 3 pm in the afternoon at this point and we had been at it since 10 am. My day of work was shot and now we were having to rearrange plans for the other kids' school, after school activities, the hospital was telling us to prepare for another week-long visit and we were just not having a good time getting geared up for another disruption.
After talking things over with a close family member, an anesthesiologist, we decided to try one more time. He would come over and evaluate the site with us to help us decide if we should try again or if there maybe was a problem with the port.
Well Christian was having none of it. He had resigned himself to going back to Houston. The last several sticks were obviously very painful and he flat did not want to go through it again "knowing" that it was not going to work again. However, I felt pretty confident that with an extra set of eyes looking at the port that we might determine what was going on.
We spent the next hour coaxing / cajoling / threatening Christian - this is something we KNOW we have to do and it's best for him but it sure is hard when you have a kid who knows this sucks and knows he is the one who is suffering and can only see the short term pain in the situation.
But he is SO incredibly strong. We're not sure what finally led to him giving it another go, but once he got it in his mind to try again, he stepped up and did what he had to do for another attempt.
So, we got the arterial port accessed again and then started on the venous port. In the evaluation with the anesthesiologist, he was able to point out that the vein appeared to have turned and was "rolling" on us. As we pushed through the buttonhole tunnel, we were actually piercing the side of the tunnel and missing the vein.
It was VERY hard for us to see this because Christian had developed a bit of a rash above the tunnel on the exterior skin and it was hiding the position of the vein beneath it. The anesthesiologist has a much better feel for tracing the path of the vein under the skin and once he showed us how it may have turned, we adjusted and it popped right in! After 11 attempts over two days we got it! There were cheers, tears and a big sigh of relief all around. THANK YOU DOC!
Funny thing is, that night's dialysis session ran 100% perfect - not a single alarm, no problems. Period. Wonderful! Crisis averted.
And last night's ran perfect as well.
One of the things about this system of access is that there are very subtle changes in the way the body presents itself daily for treatment. Positioning is so critically important and many other factors come into play like fluid retention and skin irritation and even room temperatures, stress levels and anxiety.
Anyway, it looks like we are back on track and we should roll on for a few more days until our next clinic. I'll update in a few days with the results of our last 2 clinic visits.
Thanks for stopping by!
Hope and love,
Kiki's Dad
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