Clinic visit brings good news

Hello all.

Christian and I made this week's clinic visit yesterday. We were fortunate to have an offer of help to fly, so we headed out at 4:30 am for a flight that would return the same day. Worked out great, with Christian only having to miss one day of school.

The quick news we got is good - his lab numbers have continued to fall into line with where the doctors want him to be. That means he gets to stay on the reduced level of medicines he's been at since December and also we get to drop the amount of dialysis required daily from 15 liters to 10 liters.

That coupled with an approval to go up on his flow rate (this is a HUGE development - it means his fistula has continued to mature and develop very well) means that we may be cutting his time on the machine down to 3 hours or less per day. Coupled with the hour it takes for setup and teardown, we might get the total process to something like 3.5 hours and that would be fantastic.

We'll start tonight and I'll report back in a couple days with the results.

Take care and thanks for reading.

Kiki's Dad

Quick Thursday update

I just took Christian off therapy - got started a little late, being almost 7:20 pm by the time we were running the therapy. Four days in a row with no problems. We'll take that!

Kiki's Dad

Problems nearly send us back to Houston - Part 2

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

Problems nearly send us back to Houston - Part 1

One of the crazy things about the daily routine with working with this disease is that it often turns non-routine when you can really least afford it.

Aida and Christian returned from last weeks clinic visit Friday afternoon. They had skipped dialysis on Wednesday in order to drive to Houston, dialyzed at the hospital during Thursday clinic (which lasted from 7:30am till 7:30pm that day) and drove home Friday morning - arriving about 3pm.

Christian REALLY wanted to be home because there was a friend's birthday party Friday evening on a big party bus - pizza, music, etc while driving around town. They made it in time, yay!

We picked him up after the party at 7 and prepped, accessed and placed him on dialysis about 8pm. The treatment should have been finished about midnight.

Unfortunately, we ran into a series of alarms which required stops, adjustments and restarts to the treatment. These typically are pressure related access alarms that are generated when the pressures required to pull the blood from the artery port into the machine and subsequently return it back into his body through the venous port get out of range for safe treatment.

It's a critical issue - if the pressure is too great in either direction, you run the risk of hemolysis - ie, breaking apart the red blood cells as they enter or exit the access needles. There are several potential causes - usually positioning of his arm where the access needles are, positioning of the access needles themselves within the vein (fistula), clotting in the needles, clotting in the filter mechanism on the machine, etc.

It doesn't take alot of time to adjust for these events - and most of them Friday night were body positioning. As he slept, he would move some during treatment and partially kink the tubes or fold his arm in such a way that it would restrict flow out of / in to the vein from the access needles.

So the machine stops itself, you adjust, restart treatment, the machine recalibrates it's pressure balances and then spins up and resumes running the therapy.

All told it takes about 5 minutes to get back on track. Well Friday was a real bear as we ran into the alarms 4 - 5 times an hour. It was just after 1 am Saturday morning when we finally finished and turned in. 6 hours (7:15p - 1:15a), yuck!

Part 2 coming later today.

Kiki's Dad

Heading West, Again

Well, Aida and Christian left for Houston today. It wasn't starting out great because the local weather channels were all talking about how bad a day the weather was going to be. However most of the weather moved through before they hit the road so there weren't any problems.

I don't think Aida is looking forward to this visit. We've had a two week timetable to come up with some systems in the home for the kids and we had a bad two weeks - we're not ready for the info the support staff is going to be looking for.

On our last visit to clinic, they increased the therapy Christian gets in dialysis by 50% - and it has added an hour to his therapy time. So, before it was a process of about 3 1/2 to 4 hours - typically 45 minutes of prep, 2:45 of "run time" on the machine and 30 minutes of post-therapy take down. Now he processes 15 liters of fluid instead of 10 and it has increased the "run time" to 3:30 to 3:45 of time. That means we're spending 4 1/2 to 5 hours a day on the machine.

And with that, the schedule we worked to handle the after school time with homework, dinner time, family time and dialysis time is out the window. 2 weeks forward, 2 weeks treading water. We've made sooo much progress, but boy it sure moves slowly.

I'll update tomorrow or Friday with how things went. Thanks for stopping by.

Kiki's Dad

No better time than the present

Well, I believe this post to be about 10 years in the making.

Those of you who know us closely, know we have fought, struggled, enjoyed, persevered and grown through the development of our family and in particular the needs of Christian.

If you are reading this, you probably have arrived here from our Conquest website. Thank you for taking a few minutes to check in on our progress.

I intend to develop the site over the coming months to include a history of where we have been, a snapshot of the present and a view to the promising future we have for overcoming this overwhelming disease.

The bottom line I hope we portray through the site is a presence of Hope and Love.

Christian will beat his disease. His brother and sister will grow strong, beautiful and caring for their strength in our family. And Mom and Dad, well, we are blessed with the children we have and the support we have around us.

First up is another trip to Houston this week for evaluation, therapy and clinic. I'll post later this week on what's going on right now and will update as we continue our journey.

Hope and love,

Kiki's Dad