Just a quick entry to let you know that John's implant has been postponed until tomorrow morning. I think we've helped them some just answering their questions. I know it would have helped me to have someone who had been through it to talk to before the fact.
We've spent a quiet week-end. It was rainy and since water is not Bill's friend we stayed in except for getting the mail. Haven't left at all today. It has finally cleared off and is now going to be cool. Only in the 60s tomorrow and 40 at night. May have to turn the heat back on instead of the air!
We have no appointments this week, so there may not be many posts. Until next time...
Sunday, April 22, 2012
Wednesday, April 18, 2012
We have had an interesting couple of days. When we went to the support group meeting yesterday our social worker asked if I would be willing to talk to another VAD caregiver who is having a hard time dealing with everything. Of course I said I would so she was going to give them our contact information today. Haven't heard anything yet but this person, I don't know if it is male or female, may have a hard time asking for help. There were several new people at the group and one woman was a wife whose husband is too sick for a transplant and is having the VAD implanted tomorrow. She made the comment that they were both terrified so we talked to her for quite a while after the meeting and then spent about an hour with them today answering questions. They are also not local to Jacksonville and had lots of questions about shopping and things. I'm going to spend some time with her tomorrow during the surgery. I know how scary being alone at that time can be!
Bill had a good report again from the team. He has a little rash near his drive line that has concerned me for a few days. Both Lorraine and Ginny looked at it and they think that it is more a heat rash than anything. The supply company also sent us a new brand of drain sponges and I wondered if, even though those are sterile, it was something to do with that. We got a new order of supplies this afternoon and the sponges were the old brand so I used those when we did his dressing change today. We shall see tomorrow.
I've been reading lots of blogs related to LVADs and transplants and one thing that has been brought out is the fact that this illness and treatment doesn't just affect Bill. It also affects me and our children and other members of the family. Sadly, a lot of times well intentioned people ask how the patient is doing and how the kids are doing, but never ask the spouse how they are coping. That is where I have been so very fortunate. Through all of the comments here, on Facebook, the emails, texts and phone calls, never has anyone neglected to ask how I am. And, even though it's such a little thing, it makes all the difference in the world! So, to all of you who have asked and continue to ask, THANK YOU! And, tonight as you pray for me and Bill, please add John and Cindi to your prayers. They are just starting on this journey. They told us today that they are believers, so they have also put it in God's hands just as we have.
Bill had a good report again from the team. He has a little rash near his drive line that has concerned me for a few days. Both Lorraine and Ginny looked at it and they think that it is more a heat rash than anything. The supply company also sent us a new brand of drain sponges and I wondered if, even though those are sterile, it was something to do with that. We got a new order of supplies this afternoon and the sponges were the old brand so I used those when we did his dressing change today. We shall see tomorrow.
I've been reading lots of blogs related to LVADs and transplants and one thing that has been brought out is the fact that this illness and treatment doesn't just affect Bill. It also affects me and our children and other members of the family. Sadly, a lot of times well intentioned people ask how the patient is doing and how the kids are doing, but never ask the spouse how they are coping. That is where I have been so very fortunate. Through all of the comments here, on Facebook, the emails, texts and phone calls, never has anyone neglected to ask how I am. And, even though it's such a little thing, it makes all the difference in the world! So, to all of you who have asked and continue to ask, THANK YOU! And, tonight as you pray for me and Bill, please add John and Cindi to your prayers. They are just starting on this journey. They told us today that they are believers, so they have also put it in God's hands just as we have.
Thursday, April 12, 2012
Got Bill's equipment straightened out. It turned out that it wasn't his power module but his system controller. This is the part that is connected to the pump through his abdomen. He's been using too much pressure when he goes to and from battery and power module and bent one of the pins. So, we connected him to his backup unit and he got a new backup. He doesn't like for the alarm to sound when he's switching over and tries to do it too fast which uses too much force.
Tuesday we went to the support group meeting and met a couple from Bentonville, Arkansas! He is just now being evaluated for transplant and had lots of questions. There was also another couple there waiting for transplant and he may have to have a VAD so we pulled out some of the brochures we carry for EMTs and then Bill showed them how things are connected. Gave them some of the pros and cons of the VAD. There was more discussion in this group meeting than there had been for a long time, especially among caregivers.
Today Bill had his pacemaker checked and it showed that he had a couple of episodes of arrythmia. They only lasted a second or two and the pacemaker kicked in immediately. But, Dr. Yip doesn't want to take any chances so he tweaked one of his meds which should take care of the problem.
There's a brush fire in the Osceola National Forest and it's close enough that when the wind is from the west, the city fills with smoke. Monday is was very thick and I've had a hard time breathing since then. I finally pulled out my asthma inhaler that I hadn't needed for many months and it has helped some. The air quality is supposed to be better tomorrow and through the week-end.
So, we've had an interesting week and there have been some family issues come up at home. There is nothing we can do about the situation from here other than what we have already done, and although it was a hard decision to make, we think we have done the right thing.
Bill's next appointment is Wednesday. I don't know if they will want another device check to see if the med change has helped or not. I'm sure they will let us know.
Tuesday we went to the support group meeting and met a couple from Bentonville, Arkansas! He is just now being evaluated for transplant and had lots of questions. There was also another couple there waiting for transplant and he may have to have a VAD so we pulled out some of the brochures we carry for EMTs and then Bill showed them how things are connected. Gave them some of the pros and cons of the VAD. There was more discussion in this group meeting than there had been for a long time, especially among caregivers.
Today Bill had his pacemaker checked and it showed that he had a couple of episodes of arrythmia. They only lasted a second or two and the pacemaker kicked in immediately. But, Dr. Yip doesn't want to take any chances so he tweaked one of his meds which should take care of the problem.
There's a brush fire in the Osceola National Forest and it's close enough that when the wind is from the west, the city fills with smoke. Monday is was very thick and I've had a hard time breathing since then. I finally pulled out my asthma inhaler that I hadn't needed for many months and it has helped some. The air quality is supposed to be better tomorrow and through the week-end.
So, we've had an interesting week and there have been some family issues come up at home. There is nothing we can do about the situation from here other than what we have already done, and although it was a hard decision to make, we think we have done the right thing.
Bill's next appointment is Wednesday. I don't know if they will want another device check to see if the med change has helped or not. I'm sure they will let us know.
Sunday, April 8, 2012
We've had a very quiet week and week-end. Saw Dr. Patel this week and everything is fine, we're just waiting for the call. He did say that they are going through a dry spell across the board with all blood types. We also saw one of our social workers to make sure we were dealing with everything.
There's been a problem with Bill's power module. This is the unit he connects to at night. It shows the readings from the pump that we have to keep logged. It is not showing that he is connected to the unit. It is not giving any alarms, and we can tell that he is connected to the power. If he weren't connected his system controller that is attached to him would sound an alarm. So, tomorrow we have to take it in to have it tested.
Tuesday we're going to the dentist to have Bill's dentures adjusted. He's hoping the dentist will decide that his gums have healed enough to make his permanent set.
Thursday he gets his pacemaker checked and, other than going to the fitness center that's it for this week.
We've spent a quiet Easter. Watched services on TV and then had a nice dinner of Cornish Game Hens, stuffing, mashed potatoes and gravy, corn and rolls, apple pie and ice cream for dessert. The weather was perfect, sunny and mild and we had the door open all afternoon. Just a nice spring day.
All for this time. Hope everyone had a good holiday.
There's been a problem with Bill's power module. This is the unit he connects to at night. It shows the readings from the pump that we have to keep logged. It is not showing that he is connected to the unit. It is not giving any alarms, and we can tell that he is connected to the power. If he weren't connected his system controller that is attached to him would sound an alarm. So, tomorrow we have to take it in to have it tested.
Tuesday we're going to the dentist to have Bill's dentures adjusted. He's hoping the dentist will decide that his gums have healed enough to make his permanent set.
Thursday he gets his pacemaker checked and, other than going to the fitness center that's it for this week.
We've spent a quiet Easter. Watched services on TV and then had a nice dinner of Cornish Game Hens, stuffing, mashed potatoes and gravy, corn and rolls, apple pie and ice cream for dessert. The weather was perfect, sunny and mild and we had the door open all afternoon. Just a nice spring day.
All for this time. Hope everyone had a good holiday.
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