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
Friday, February 22, 2008
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
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
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
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
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