Q. How long has Charlie been on Dialysis?
A. He started on January 27th.
Q. How does home dialysis differ from hospital dialysis?
A. Peritoneal Dialysis (PD) is done every night for 12 hours. This form of dialysis is performed at home, but only Jeff and I have been trained on how to administer the dialysis. Hemodialysis (HD) requires a trip to the hospital 3 or more times a week and be hooked up to a machine that takes his blood out of his body and cleans it. He would have to be hooked up for 4 hours without running around or eating during that time. Not to mention the only hospital that does it for little kids is an hour away from our house at Amplatz.
Q. How long is Charlie on dialysis each day?
A.12 hours every day.
Q.How is Charlie different now that he is on dialysis?
A. He is back to our trouble making little boy. He is such a trooper
Q. Is the home dialysis machine portable?
A. Yes, it even has a case that it fits into.
Q. If you can take it other places, what all do you have to bring?
A. We have to bring the Cycler (dialysis machine) and what ever bags of solution we need. If we go out of state we can have the bags of solution sent to our hotel.
Q. Is Charlie still on so many medications now that he is on dialysis?
A. He is on 3 different blood pressure medications, one thyroid medication, and 5 other vitamins and supplements.
Q. Is Charlie cooperative about the dialysis?
A. Yes, we put a TV in his room so he can watch a movies when he is stuck in bed awake. Since he is hooked up for 12 hours a day he often times doesn't sleep for 12 hours and needs some entertainment.
Q. Does Charlie still need a transplant?
A. Yes, there is still a need for a transplant. Unless God heals him there is no other option but a transplant.
Q. If yes about the transplant - what is the timing?
A. As soon as we find a donor and can set up date with the surgeon and the donor.
Q. What are the transplant people looking for as a donor match for transplants?
A. Someone between 18 and 50 in age and in good health. They told us that anyone can be tested to be a donor. Some people may not be a match for Charlie but they could swap with another donor that isn't a match for their kid/ friend then they would give their kidney to Charlie. Its called paired exchange. to be a direct donor you would have to have A+ or O+ blood type since charlie is A+.
Q. I know Charlie lost a lot of muscle mass when he was hospitalized so much this winter - how is he doing with re-learning to do things like crawl and walk and play and talk?
A. He has bounced back so fast since starting dialysis. He started crawling again soon after his 2nd birthday (2-9-14). The day Willa was born Charlie started walking again (2-24-14). Ever since then he has been acting like a normal 2 year old. He is talking all the time.
Q. How is your family doing?
A. We are doing really well considering whats going on. Jeff and I have both accepted what is going on with Charlie which makes our lives 'easier'. We still wish that this wasn't going, on and Charlie was healthy. Some days its hard but most of the time its our new 'normal'. Now that he is on dialysis it is much 'easier' as we don't have to worry so much about going to the hospital because dialysis helps keep him healthy. Although any sign of sickness Jeff and I are talking to Charlie's nurses to see if we need to bring him in. We are all happier not living at the hospital. We have a really hard time thinking about his Transplant. He will have a huge incision, he will be in the ICU for a week after the transplant and then in the hospital for another 2 weeks; so 3 weeks total. That just breaks my heart. I know it means he will be 'better' but what are baby has to go through to get better is something I would not wish upon anyone.
Q. What help can people provide to your family?
A. Meals, donations (to help with ALL the medical bills), prayer (pray that god will heal Charlie), company (since we can't leave the house as easy as we once could), support, and help with the house (cleaning, construction, landscaping anything to help us finish our house so we can move into a house that will better fit our family).
Q. What happens if a donor match kidney is not found?
A. Charlie need's a kidney they will not stop looking till we find one. Right now he is on an inactive donor list that will become active if we can't find a match with in our family and friends that are being tested.
Q. Is there an ideal time to get a donor kidney?
A. As soon as possible.
Q. How is looking for a kidney for someone so young different than an adult who needs a kidney transplant (if anything)?
A. I'm not sure except I know that the younger you are the higher you are on the list to receive a kidney. Kids can and do have adult kidneys in there body.
Q. What is the procedure to hook Charlie up to dialysis and also to unhook him?
A. Check previous blog post. A Day of Dialysis
Q. In addition to dialysis are there other things you need to do each day to monitor Charlie?
A. We need to take Charlies blood pressure, temperature and weight 2 times every day (morning and night). Then he also need his medications every day.
Q. Are there results of some sort you are recording? Do those results get sent to someone who is monitoring Charlie?
A. We record the numbers from the cycler and Charlies vitals every day and once a week we give them to a nurse that talks to Charlie's Dr. about the numbers.
Q. Does the dialysis machine automatically send results (is there an internet connection on the machine?)
A. It does not and no there isn't internet on the cycler.
Q. How often are you discussing results with those who are monitoring Charlie?
A. Once a week. Unless we are having a problem then we can page them any time day or night.
Q. Do you have a normal range for results (whatever those are) so you have an idea that the dialysis is working?
A. Yes we do.
Q. Can Charlie roll over in his sleep and stop the machine from working in some manner?
A. He can sleep in any position he wants on occasion he will kink the line or need to be flipped over due to a low drain.
Q. Does Charlie have to be in bed when he is on dialysis? If yes, how is he doing with that? Does he seem to understand?
A. Yes, he does need to be in bed. Its normal for him now that he has been on it for a while. When he first started on dialysis he was to sick to fight being hooked up and now that he has been on it for a while he is used to it. Yes, there are times when he doesn't want to be in bed or he wants to be held, but for the most part he knows it his time to be in bed.
Q. How is Natalie doing with all of the attention Charlie needs and now with new baby Willa?
A. Natalie is AMAZING! She is my biggest helper. She and Charlie play so well together, it is so awesome to watch. When she wants mommy or daddy she tells us she need a snuggle.
Q. Do you receive updates on routine basis regarding Charlie's priority on the donor list?
A. He is on an inactive list right now as we are testing family and friends first.
Q. Does he have a number at this point?
A. Not at this point but because he is so young he will be at the top of the list if there isn't a match withing the family and friends that are being tested.
Q. Does he have any priority because of his age?
A. Yes, he will be at the top of the list if he needs to go on the list.
Q. Is the dialysis frequency difficult to manage, especially with a 3 year old and a newborn?
A. It can be, Jeff and I try to start getting him ready for bed between 7 and 7:30 so he can be hooked up at or before 8. Some times its a challenge with the other kids but for the most part Jeff and I are a good team and can get it all taken care of with time to spare.
Q. Are you both exhausted?
A. Most days I would say yes we are. Charlie wakes up a few times during the night, Willa is a night owl and also wakes up during the night and Natalie is an early bird. In any given night Jeff and I get out of bed to help kids at least 2 times but often its more then 2 times. Jeff and I do not sleep much at all but surprisingly can function all day.
Q. How often does Charlie get sick like the other night that you were up with him all night, but he was better in the morning?
A. Because his kidneys are failing at such a rapid rate and he is in end stage renal (kidney) failure we have to be very careful to not expose him to sick people. He has a weakened immune system. Anything could send him to the hospital.
Q. How often do you need to take him to the doctor(s)?
A. Once a month while he on dialysis. after his transplant it will be weekly.
Q. Do you need anything? Diapers? gift cards? Money?
A. This is a hard question to answer. Yes we do but if I say we need diapers we will be blessed with to many boxes of diapers to sore them all. Gift card to target to buy diapers would be better. or gift cards to The Home Depot would be good to as we need to finish our house so we are living in a finished house. If you have ever been to our house you will know that is it always under some sort of construction. Money is always helpful. We have so many medical bills its hard to justify spending money on the remodelling that needs to happen.
Q. Has Willa been tested yet?
A. No she hasn't
Q. What will life be like after his transplant?
A. Life will not be easy. He will need medications every day at the same time for the rest of his life. It will be to prevent his body from rejecting his new kidney. For the first year every time he is sick we have to go to the ER to make sure its not his body rejecting his new kidney. Some of the medications he will be on could cause skin cancer and other kinds of cancer. Every time he is outside we have to lather him up with sunscreen and keep him out of direct sun light if we can. They say the first year after the transplant is the hardest. I'm not sure what could be harder then the past few months of our lives so I'm not looks forward to the first year after his transplant. He will have to have his blood drawn 2 or more times a week and have to see his Dr. at least once a week.
Thank you to everyone who asked all these questions. If you think of any other questions just ask in the comments or send an e-mail and I will add them.
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