Well I'm sure I didn't make any friends today.
TY had ECP today and we had the same nurse so... I told her that it was too hard on Tyler (and he has been through too much in 3 years) to poke and jab to get a vein and if it wasn't able to get it the first time she had to let some one else try.
I was very nice about it , at first, and of course she didn't have any problems before?! Well there were alot of excuses etc etc etc.
I won't go into all the details but I'm sure I offended someone, it wasn't my intensions, but, doggone it I had to say something.
She did end up getting it in, we did switch off nurses, and Tyler compromised on where they could try to put it in with retrictions. I told them that we might have to talk to the doctor to see if she could come up with someone that may have a easier time with Tyler's veins.
Of course it was because Tyler's veins have been so overly used(?).
It isn't because of blood draws or ECP,but that is pretty much all they have used his veins for and they could get them in the beggining.
But anyways, I'm not there to make them happy, I'm there for Tyler.
He was getting so stressed out! The look he kept giving me. I felt so guilty!
In the end they said they understood, but then asked me if Tyler was on any anti-depressents? You know he doesn't need to be drugged out just so they can get his IV in!!
I'm sure he is depressed sometimes, I would be too! He does talk to us about things that are bothering him, does things with his friends, goes to school, tells us about his day and when things aren't going right. When he walks in the door of the hospital his mood does change completely. Do you Blame him!!!
We got through ECP after all that, last week he also got the Ivig infusion and that went fine too (oh and they didn't have to dig for the vein). Everyone was very nice down there. His nurse was very good! We also seen his main BMT nurse Teresa! And he didn't want one but Sara, who is a message therapist gave me a wonderful message (shoulders and neck). I think she could tell I really needed one! She is so sweet!
His blood counts were evening out last week and this week they look much better!
calcium is back up
AST - 22
ALT - 50
LDH - 331 a little high
ANC - 7.1
WBC - 10.3
HGB - 13.6
HCT - 39.1
PLT - 151
So far going pretty good! Oh he has another ECP tomorrow. We'll see how it goes. I like them as people, they can be very nice even nurse "jab" just sometimes some don't feel they have to listen to the patient, and have a hard time believing that maybe there not in the right.
Tyler is planning on wearing a costume tomorrow up there. I will try to post pictures.
Thanks for listening
And put a prayer in for our new friend Noah and mom Diane.
We met them last week. Noah has been through a lot, he's a cute kid!
Kelly
Thursday, October 30, 2008
Thursday, October 16, 2008
Fun, Fun, FUN!!!
Hi all
I thought I would update after all appointments this week.We started the week Monday at UM with ECP Photopheresis. The nurse had some difficulty getting a vein and ended up giving Ty a nice bruise but other than that it went fine.
Tuesday he had an eye appointment at Kellogg eye center. Ty's eyes are very dry but his vision is still very good. The doc said to continue with the restasis eye drops but to schedule regular eye drops in through out the day at least four times a day. She also told us to watch for other issues being they are starting to wean on the steroids.
Today he had a BMT clinic appointment and ECP. His Immunoglobuling is low (325) which are basically his immunities, ability to fight off infections and viruses. Next Thursday he is going to be infused with Ivig which takes about 6 hours. Needless to say, Tyler was not happy about it! But they have been watching it and it has been going down. They say that's not unusual after a transplant. They were surprised when we said Tyler has never had it before. After three years of treatments and two stem cell transplants the most he has to be infused with is one thing of blood and that is it! He is not the usual transplant patient.He is also having a slight issue with his glucose level. It was the most it has ever been, 238 (the most we have seen is like 140). Steroids can cause diabetes so here is another thing they are going to keep an eye on!Tyler wasn't thrilled with this news either. He was rather grouchy at our visit. I think the stress just starts getting to him!
The rest of his counts were:
Calcium a little low (unusual)
Protein a little low
ALT 55
AST 17
LDH 321
WBC 11.5
HGB 14.6
ANC 9.9
Also they cut his steroids down again 64mg evey other day.
So then off we went to ECP and had a little issue with getting the IV started. She continued to poke and prod into his arm and I had to step in also because she was so determined to show she could get it in, she really made it miserable for him! The other nurse kept saying she could get it in the other arm,but to no avail she wouldn't listen to her. Then she put it inside his fore arm which continuously hurt him and we told her it had to come out! GEES!!! Don't get me wrong she is a nice enough person but.... I think we will just not let her do it anymore! Two times (days)is enough!!! So anyways he got his ECP and they had to watch his BP because it tends to run low and it did get to 93/52. That same nurse insisted he needed a big kit instead of the small, don't know why because it still took as long as before and they still had to watch because of his BP! I still don't see the benefit and I don't think I was the only one who thought that way!
Around 6-6:30pm we were on the road for home. Another LOOONG DAY about 10 1/2 hours including drive time!
Well thanks for checking in! We appreciate the prayers!
Please keep all our cancer friends in your prayers!
Including:
Nicker (wilms) praying for NED
Carly getting through her treatments
Nick B had a hard day at UM the other day
Allen with his cGVHD and has been in the hospital alot
Chelsea I hope scans come back NED
Evan just starting with cGVHD
and all our UM,Toledo Childrens, LLS board,caring bridge, carepages and Web magic board friends who are all fighting their battles so bravely!
It's so sad there are so many!
And to Babyhope who earned her angel wings may her family find peace!
Kelly
I thought I would update after all appointments this week.We started the week Monday at UM with ECP Photopheresis. The nurse had some difficulty getting a vein and ended up giving Ty a nice bruise but other than that it went fine.
Tuesday he had an eye appointment at Kellogg eye center. Ty's eyes are very dry but his vision is still very good. The doc said to continue with the restasis eye drops but to schedule regular eye drops in through out the day at least four times a day. She also told us to watch for other issues being they are starting to wean on the steroids.
Today he had a BMT clinic appointment and ECP. His Immunoglobuling is low (325) which are basically his immunities, ability to fight off infections and viruses. Next Thursday he is going to be infused with Ivig which takes about 6 hours. Needless to say, Tyler was not happy about it! But they have been watching it and it has been going down. They say that's not unusual after a transplant. They were surprised when we said Tyler has never had it before. After three years of treatments and two stem cell transplants the most he has to be infused with is one thing of blood and that is it! He is not the usual transplant patient.He is also having a slight issue with his glucose level. It was the most it has ever been, 238 (the most we have seen is like 140). Steroids can cause diabetes so here is another thing they are going to keep an eye on!Tyler wasn't thrilled with this news either. He was rather grouchy at our visit. I think the stress just starts getting to him!
The rest of his counts were:
Calcium a little low (unusual)
Protein a little low
ALT 55
AST 17
LDH 321
WBC 11.5
HGB 14.6
ANC 9.9
Also they cut his steroids down again 64mg evey other day.
So then off we went to ECP and had a little issue with getting the IV started. She continued to poke and prod into his arm and I had to step in also because she was so determined to show she could get it in, she really made it miserable for him! The other nurse kept saying she could get it in the other arm,but to no avail she wouldn't listen to her. Then she put it inside his fore arm which continuously hurt him and we told her it had to come out! GEES!!! Don't get me wrong she is a nice enough person but.... I think we will just not let her do it anymore! Two times (days)is enough!!! So anyways he got his ECP and they had to watch his BP because it tends to run low and it did get to 93/52. That same nurse insisted he needed a big kit instead of the small, don't know why because it still took as long as before and they still had to watch because of his BP! I still don't see the benefit and I don't think I was the only one who thought that way!
Around 6-6:30pm we were on the road for home. Another LOOONG DAY about 10 1/2 hours including drive time!
Well thanks for checking in! We appreciate the prayers!
Please keep all our cancer friends in your prayers!
Including:
Nicker (wilms) praying for NED
Carly getting through her treatments
Nick B had a hard day at UM the other day
Allen with his cGVHD and has been in the hospital alot
Chelsea I hope scans come back NED
Evan just starting with cGVHD
and all our UM,Toledo Childrens, LLS board,caring bridge, carepages and Web magic board friends who are all fighting their battles so bravely!
It's so sad there are so many!
And to Babyhope who earned her angel wings may her family find peace!
Kelly
Friday, October 10, 2008
Saturday, October 4, 2008
LOOOOONG DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
LOOOONG DAY!!!!!
Well we were up and going this morning to get to University of Michigan for clinic appointment and ECP.Clinic went well. Tyler's CBC were pretty good,
WBC 14.7
PLT 136
HGB 15.4
ANC 12.7
ALT 45
AST 15
LDH 249
His cGVHD looks pretty good, a little red on his arms and eyes still dry.Mouth is still patchy also, but all in all not too bad! Dr Choi brought his steroids down a little again and thinks he is doing good!Then we went to ECP. Tyler is an unusual kid, normally BMT patients don't have such a high Hematocrit (which isn't a bad thing) plus his size, he should be able to do a "big kit". Because his blood pressure run low they have to do a "small kit". The problem is that because of all the red cells in the Hematocrit, they tend to spill over when trying to collect white cells. So basically it takes longer to do the "photo" part of the treatment. OH Well, about 5-6 hours later we were done and on the road for home at about 6:30pm tonight! But everything went well, he's a little tired out and not thrilled to be up there that long but.... is our glass half full or half empty?!!!
We are very blessed that through all this Tyler is still doing pretty well. It could be much worse!
We are also blessed with such good people around us! A big THANK-YOU goes out to Eastwood High School class of 2008 for the gas card for three hundred dollars!! THANKS! It sure comes in handy with all the trips to Ann Arbor!
Also an update on Ryan, his knee is doing well.
Thanks for the prayers and support
Throw a few more in for all our friends battling this awful disease!
Kelly
Well we were up and going this morning to get to University of Michigan for clinic appointment and ECP.Clinic went well. Tyler's CBC were pretty good,
WBC 14.7
PLT 136
HGB 15.4
ANC 12.7
ALT 45
AST 15
LDH 249
His cGVHD looks pretty good, a little red on his arms and eyes still dry.Mouth is still patchy also, but all in all not too bad! Dr Choi brought his steroids down a little again and thinks he is doing good!Then we went to ECP. Tyler is an unusual kid, normally BMT patients don't have such a high Hematocrit (which isn't a bad thing) plus his size, he should be able to do a "big kit". Because his blood pressure run low they have to do a "small kit". The problem is that because of all the red cells in the Hematocrit, they tend to spill over when trying to collect white cells. So basically it takes longer to do the "photo" part of the treatment. OH Well, about 5-6 hours later we were done and on the road for home at about 6:30pm tonight! But everything went well, he's a little tired out and not thrilled to be up there that long but.... is our glass half full or half empty?!!!
We are very blessed that through all this Tyler is still doing pretty well. It could be much worse!
We are also blessed with such good people around us! A big THANK-YOU goes out to Eastwood High School class of 2008 for the gas card for three hundred dollars!! THANKS! It sure comes in handy with all the trips to Ann Arbor!
Also an update on Ryan, his knee is doing well.
Thanks for the prayers and support
Throw a few more in for all our friends battling this awful disease!
Kelly
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