Tuesday, October 14, 2008

Lot's of changes - moving forward positively!

It's been a while since my last post. We've had a lot of change in the family these past few months to update you on.

As you know the past 1.5 years have been dedicated to moving Christian to the new in-home hemodialysis. This process has been a larger task than we anticipated.

All of the time missed had Christian running behind on schoolwork at Kehoe and it was decided it would be necessary to hold him back another year to keep going there.

Coupled with the financial crunch we have been working through, it was very obvious we had to make a change to public schools for the kids. Late in the summer, we made the decision when it was apparent some work I was expecting to start got either delayed or canceled.

So we have moved the kids from 1 small school to 3 different larger schools. The kids appear to have adjusted very well - God Bless 'em.

However, we were still having a terrible time with a family routine - Christian would get home at 4:30, we'd eat dinner at 5-5:30 and start getting him on the therapy at 6-6:30.

The problem is, sometimes it was taking as long as 3-4 hours to get his accesses started and so the other 2 kids were left to fend for themselves and Christian was going on therapy until sometimes 2am.

Even on days when things went right, we were having to leave the other kids to themselves and this was becoming a problem.

Well, we have moved Christian to a program at his school called "Hospital / Homebound". We started it yesterday and it has been wonderful.

Essentially Christian goes to school 1/2 a day, and we use the other 1/2 for dialysis time and teachers come to the house to teach him.

We are starting his therapy at 7am - usually have him connected and running by 8-8:30 and the teachers come between 9 and 11.

We've only done this morning routine for a few days now but it is WONDERFUL.

Christian will be going back to the hospital for a week to create a third buttonhole again - replacing the one that we lost at the beginning of the summer. Not sure of the date yet, but we'll let everyone know.

Take care,

Kiki's Dad

Thursday, July 24, 2008

Late night reflection...

Well, I promised an update before the end of the month and so here is a quick couple thoughts regarding Christian and his challenge.

The question we get asked that seems to always underlie his challenge is simple, yet huge: Why?

The answer is simple, yet huge as well: It's right there in scripture - John 9: 1-3.

When asked by the disciples why a blind man was blind, had the man or his parents "sinned", Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him."

The more you re-read and reflect on that, the deeper and larger it gets, I know.

It doesn't really answer the "why" question, it just "is". Finding peace in that simple, yet huge question and response is what it is.

Spend some quiet time with it, you'll see what I mean.

-- Aida and Christian are headed to Houston today for clinic and a fishing trip - the Texas Oilmen's group takes the dialysis kids out once a year to a private lake and it is a great time for the kids. Thank you, TOBI volunteers!!!

Take care,

Kiki's Dad

Thursday, July 10, 2008

We're still out there!

My last post was titled - "What happened to March?"

And then promptly 3 more months went by and I have not been able to update the page or work on the site or finish the video.

I just wanted to drop a quick note to all that Christian is doing pretty good right now. He attended a summer camp where there are dialysis facilities for all of the kids - it was a great experience for him.

On the tough side, we may have lost the use of the "B" port we use for dialysis access in his arm. Thank goodness we had the "C" port created back in February (remember those blogs?). At clinic this month we will see if they can use the sharp needles and restart the "B" port again. Having the option of the third port is something we'd like to get back.

Things have been very tough for our family these last three months, but at the same time I have never been more certain that this year will end strong and be the beginning of a great run for us.

I can tell you that things will get tougher for us before they get better, but they will get better.

Sorry for such a short update, but I know some of you have been wondering how things are going. I am without internet access right now due to my Sprint card flaking out. I have a new one on the way, but Best Buy has it backordered since 6/29! So my short internet times are at coffee shops with only enough time for me to roll through emails and get some business done.

I'll post more before the end of the month of July - scouts honor!

Take care,

Kiki's Dad

Tuesday, April 1, 2008

What happened to March???

Wow, how fast does a month fly by these days?

As you can probably tell, things have gone pretty well since I last updated. We have gone back to once a month clinic vists as Christian's lab results have continued to remain positive.

Things were so tough during December through February that we still have not implemented the exercise routines into Christian's regimen, but that will be our focus this month.

One of the excercises we really need to get on top of is the stretching of the IT band (ILIOTIBIAL TRACT) as shown in the picture. This is one of the causes of the curving of the legs we see in Christian's development - the deficiency in nutritional complements and build up of wastes in the body that the kidney would normally regulate cause his bones to weaken and his ligaments are tight.

Couple that along with the normal pressure of standing / walking during the day and one of the side effects of long term kidney disease is a curving of the lower legs.
The condition is known as genu valgum or knock knees and can become quite severe in kidney patients if not addressed. The good news is that with consistent exercise and better nutrition Christian can grow through it. Currently his legs are not severely affected and that is good news.

The better news is that if we get one more good month of labs, the doctors are going to put Christian back on growth hormone. He has been off of the hormone for about 3 years and getting back on it will be great. It will be nice to add some more height if we can and keep him from falling too far behind his friends and classmates.

We're also going to take this month to get some additional content up on Christian's site including pictures and a special video. Look for that in about 2 weeks.

Thanks for stopping by and keep plugging!

Hope and love,

Kiki's Dad

Friday, February 22, 2008

Coming home!

Well, it's been a long two weeks but Christian got released from Texas Children's today. Christian's fistula continues to perform well and the new access port that was created these last 10 days has worked fine this week.

Although delayed by 2.5 hours of Houston traffic, spirits are high as we wait for them to get home about 11pm.

I'll update in a few days again. Thanks for stopping by.

Kiki's Dad

Tuesday, February 19, 2008

Extended Stay Houston

Talked with Aida this morning. She was hoping to be able to come home after tomorrow's therapy for Christian but they told her today to expect to stay through Friday.

They are accessing the new port with the blunt needles now and that seems to be going fine.

This morning they ran into alot of trouble with air infiltrating the system. Aida said they spent 1:45 minutes clearing alarms and repositioning the access needles. Finally they were able to clear the air from the system and get a rolling dialysis without alarms.

FYI - the problem with air in the system is that if it gets into the bloodstream it can stop the heart, so it is a critical problem to handle. A volume of air into the heart chambers would mean the heart is contracting against nothing and would pump and pump yet nothing would move through the system.

Clinic is a good place to be when that problem acted up, so we'll take that little bit of fortune today.

Take care.

Kiki's Dad

Monday, February 18, 2008

10 Days Down - 3 To Go?

A lot has gone on these last 10 days.

When Aida and Christian first got to Houston on Friday the 8th, Christian had not dialyzed for two days. Fortunately they were able to get access in Houston and got him on the machines - pulling a full 4.8 lbs of fluid from him.

Over the course of the next few days there was still significant difficulty getting access in the one port we had been having trouble with. It was decided to definitely create the third port.

Christian held a tremendous amount of anxiety with this, holding out for a day or two. Finally, working with the child-life specialists, he proposed to sign a contract that he would the do the third port if Aida was allowed to try one more day on the regular port to get access easily.

Well that kind of put Aida in a pickle but we knew it was a tough situation anyway. So she tried this last attempt on Tuesday but was unable to get access. It took them about 5 attempts.

So they started on Wednesday with the sharp needle creating the third access port. It actually went a lot smoother than Christian expected and that was great.

To date, they have done the sharp needle for three days. I believe the plan is to do it again today and then go to the blunt needle for Tues and Wednesday.

If all goes well, they should be able to head home on Wednesday.

Kiki's Dad

Saturday, February 9, 2008

Difficulties with access again - return to Houston

Hello again - we've had another little twist of events.

After running fine for about a week, we had a return to the fistula port access problems we had back in late-January.

Last Wednesday night we tried unsuccessfully for about 3 hours to access the port and had to put it off for the night.

Thursday afternoon we started at it again and ran into the same problems - every time we stick, we are not getting to the vein and the pain for Christian is becoming too much.

Doc came over again, but we could not get it this time. Doc brought us to his hospital locally so that we could use a device called the Veinlite to help map where the vein was. It turns out that the vein had moved completely out from under the access port - about 1/16th of an inch to the right.

So, we mapped the vein out and then went to eat pizza for Christian's birthday dinner. The extra time gave him a little break from the painful sticks and let us prepare him for another try. About 10:30 pm that night we got at it again but unfortunately, even with the extra guiding info, we were not able to get the access.

Being unable to dialyze for two days, Aida and Christian headed back to Houston at 6:30 am Friday morning. They made it for a dialysis session where after 2 attempts the pros got the access. Christian dialyzed without event after that.

However, this morning, after 2 hours and about 10 attempts, they were unable to get the access for today's dialysis, so they resorted to using the standard sharp needle technique.

The plan right now is they will stay in Houston a week or two. The doctors are going to have a 3rd access port created on Christian's arm so that we have more opportunities to access at home.

Christian is really not excited about doing the third port. You create the ports by sticking the fistula with a sharp needle in the exact same spot and angle for a few days in a row, then going to the "blunt" needle for continued access. Ideally this should get us to a point where the access sticks are done in 10 seconds and with very little pain, even without anesthetics.

That's where we want to be - and hopefully I can write back with some good news in that direction in a few days.

Take care.

Kiki's Dad

Thursday, January 31, 2008

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

Thursday, January 24, 2008

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

Wednesday, January 23, 2008

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

Tuesday, January 22, 2008

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

Thursday, January 17, 2008

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

Monday, January 14, 2008

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