momofsara

Hello all-- On Thursday, Sara received her new port. It is something we understand is fairly new. Its called a Purple Power Port. It has a triangle shape with 3 little nubs on the top to help medical personnel locate the center for accessing. The procedure was not altogether flawless(is anything ever?) To begin with, some of the medical people in the holding room before her surgery were very not nice. There were questions as to why she was getting the port if she doesnt have cancer, they were very rude with their questions. I think its not their business WHY, thats up to Sara's doctor and herself and family. Then when she asked for something for pain,(since she couldnt take it before going to the hospital) she overheard them say something about a "drug seeker". This was the first time I havent accompanied her to holding so she was alone with no one to speak up for her. That wont ever happen again. She has a very hard time forming her thoughts and relaying them, also she has some difficulty understanding when people ask her stuff rapidly and wont allow her time to process the question and form her answer. THEN---- on to the OR--- well, before the procedure is over, she comes out of anesthesia. They were finishing up, but she still felt the last of what they were doing. When she was brought back to the day surgery unit, she was soooo upset and in tears. So, a good time was not had by all !!!!!!!! Needless to say the hospital is going to hear about the unprofessional actions of some of their employees. Anyway, shes recovering at home, and feeling some discomfort at the site. It doesnt stick up as much as I thought it would when they showed us the device. At least now we wont have the tubing coming out of her chest and being a staph magnet. No more weekly flushing(hooray). Only monthly flushing, we may have to go to a dr office for that unless we can be trained to do it at home. The jury still seems to be out on that point. Thats how things stand at the moment, we'll see how it goes from here on. Best to all Susan

Sara has had 3 TTT's. Originally, here in Alabama, and 2 times while she was living in California. All 3 were positive. The cardiologist she has now said when he first saw her there was no need to put her though all that again if even one was positive. I cant see doing it over and over, especially if the first one was positive. Just my opinion, as I see the pain and exhaustion Sara suffers from all the repeated testing shes gone through. Susan

I took Sara today to have the stitches out from where her Groshong was removed. When the surgeon talked to us and examined the bruise and knot on her arm which was still there from her last hospital visit, he decided that we really needed to do the port. He was concerned with the fact that an IV wont stay in without blowing the vein. Also he wants to do it while shes "well" and not in the hospital very sick. He really didnt want it to be done in a pressure situation. So she is having a port put in on Thursday of this week. ( 11/20 ). He didnt like the fact that she was still bruised after over two weeks, and this was just for a blood draw on her inner forearm. Hopefully the port procedure will go smoothly. It should be a day surgery thing. We'll see.... Best to all Susan

yes her doctor sent her home on antibiotics, she is almost through with them now. Susan

Since Sara got home from the hospital on 10/31/08(yes, halloween) she has seemed to be doing some better. At least shes been fever free. I took her to her pain management doc on Thursday of last week, after that we drove by her PCP office to check on her flu shot. The nurse came to the car and checked her temp first, and since she had none, gave her the flu shot. Thank goodness she didnt have to go in and sit in the office. We even stopped by Kmart for a bit !!!!! First time shes been in a store in months. After that she was wasted and we hit the road for home. She slept almost 24 hours as a result of her outing. We go Tuesday of next week to get the stitches out of her chest (where the Groshong was removed). Her doctor is going to try to wait about putting in a port. See how long she can stay out of the hospital. Any way, just an update, thanks again for all the kind thoughts, well wishes and most of all the prayers..... Susan

Its totally understandable to have those feelings. I see the same thing with Sara. She gets so down and utterly hopeless sometimes. Her friends have abandoned her and since we have a very small family there is not much there either. So, sometimes the only thing left is to vent, vent and more vent. Just get it out and dont try to keep it all in. You know we all understand here. When Sara is having a "down time' I just let her rave on, and dont try to tell her "oh it could be worse, try to stay positive, hang in there, you cant give up" etc,etc.... If she feels the urge to cry, then I just let her start the flood.. Mainly, I just am there for an ear and for a Mother hug when shes ready for it. Sending you a gentle hug ---Susan

Glad you got some answers at least. I was very interested in your impression of Vandy. We have considered taking Sara there since it does have a research facility. Have been wondering if it would be worth the trip, since its so hard on her to travel, however since we live in Alabama at least its not extremely distant. Thanks for sharing your experience, hope you enjoy some better days ahead. Susan

Sara's has been "alarmingly low"according to the nurses when she's been in the hospital. This last time the lowest it got was 78/49, they didnt even like that.( We actually thought she was doing quite well) She was talking to them and not feeling much different than at any other time. However, hers has dropped to 70/30 and she was unresponsive, which caused the nurses to call in the rapid response team to "revive" her. This kind of thing seems to freak out the nursing staff. Guess they thought I was some kind of uncaring Mother because I wasnt bouncing off the walls during this time. I've learned over the years not to get too excited too quickly, remain concerned, but not panic. Anyway, hope you are feeling better. Take care and God bless.. Susan

Ditto on the chocolate milk. Sara drinks that along with lots and lots of water. The sports drinks dont seem to agree with her too well. Since shes on lots of meds, the chocolate milk seems to soothe her tummy. Susan

Well, we got Sara home from the hospital on Friday. She seems to be doing pretty well. Her temp has stayed down and she does feel better than she did when she was admitted. The doctor sent her home on anitbiotics, however. Guess he wants to be sure shes "well". Between the doctor, Sara, and the rest of her family, we have opted to put off the port-a-cath for now. Her doctor wants to see if she can stay well enough to not need it. He says we can always put one in if it becomes necessary. She feels like she's been set free after over 2 years of having tubing coming out of her chest. I remain hopefully optimistic. With her track record, however, I'm a little aprehensive. Thanks to all of you who have kept us in your thoughts and prayers. Susan

First of all, thanks to all of you who have sent us your thoughts and prayers. Sara continues to be in the hospital. Her fever is better under the influence of antibiotic heavy-hitters such as Levaquin and Vancomyacin. She continues to receive IV fluids at a good pace. Her appitite is ok, however her mouth and throat is so sore its hard for her to eat. Ice cream seems to be the food of the day... She underwent surgery on Thursday to remove the Groshong catheter from her chest and replace it with a temporary central line. Blood is being drawn regularly to monitor infection and when the doctor is satisfied her blood is "clear" she will be taken back to surgery for removal of the central line and placement of a permanent port. This should help with the repeated infections( I hope ). She tries her best to remain in good spirits, but it is taxing her fortitude. Shes actually emotionally spent. For that matter, so am I...... But we remain hopeful for an improvement in her condition. The nurses and staff have all been very supportive and helpful to both of us and we do appreciate that.. I'm home for a bit of a rest and a good, hot shower. I've showered and changed clothes at the hospital, but always with an ear listening for Sara. Anyway, thanks again for your thoughts and prayers, just keep 'em coming. Will let you all know when I have more to report.... Susan

Just wanted to update you all on Sara's condition. She is back in the hospital. I took her to her surgeon's office yesterday to have her groshong checked. She was still running temp. but he didnt seem too concerned, we left there and I just drove on by her PCP's office and went in to tell the receptionist about all this. She told the nurse and the nurse came out and told me they were going to take her in and put her in a room for the doctor to see. We waited just a couple minutes and the nurse came to take her temp. at that time it was 102.6, the doctor came in soon after to check her over and asked the nurse to come back and do a recheck on her temp. it was 102.8 by then. He told Sara " you just bought a bed". He didnt want us to go home first, we were to go directly to the hospital, he called them while we were sitting there. I stayed with her all night and all day today. I just now came home for a shower. I'm hoping we finally get to the bottom of all this "fever stuff". Everyone please keep her in your prayers, or just keep a healing thought for her. I'll keep you posted---Susan

Maxine, thank you for the kind words. It is very frustrating to see my daughter so sick at such a young age. I by nature am a "fixer" so it just makes me mad to not be able to fix her or at least find somebody who can !!!!! It helps so much to be able to come here for comfort and understanding. Thanks again for your concern. Hugs right back to you---Susan

Well, since my last post, Sara has continued with the intermittant fevers. She got to 104.2 on Tuesday, and her doctor sent her to the outpatient clinic at the hospital so she wouldnt have to wait in the ER and be seen by a doctor with no clue about her. The nurse did two sticks on her arm for blood and also drew from the Groshong. The thing I'm wondering about is if any of you have had blood drawn that looks "watery". When they drew from her arm, the blood that first came out looked funny, like it was thin and watery. Then when they tried to draw from the Groshong, it was very difficult to draw from, they had a hard time getting enough for the tests. When they were going to flush it after the draw, the saline solution wouldnt go through. The nurse called in someone else who was supposed to be more proficient in that sort of thing. Well, she had to work with it for quite a while. In the mean time, they put in a call to the doctor who put the Groshong in place. But the solution finally went in--very slowly and with much difficulty--but it did flush. This concerns me very much, I know it should be easy to draw from and to flush. At least we do have one result of the tests, her urinalysis shows a bad UTI. Her doctor called in some Cipro for that and said we would have to wait for the cultures to come back to know more. Just seems to be more and more of the same. I'm afraid there is something they are not catching..... We've been through all this before and it has resulted in lengthy hospital stays. Maybe we will get to the bottom of all this soon and put a stop to it ( at least until the next time) I do think her doctor is going to see about home health for her. That way she wouldnt have to get dragged around for all these tests. The nurse could come right to the house and do the draw. Also they would report any changes or problems directly to her doctor. I think this would be a great benefit. Do any of you have home health care? I'm not too familiar with it, just when my Dad had it when he had cancer, and that was 13 years ago. Best to all--Susan

Sara questioned her doctor about taking Lyrica and was told NO--under no circumstances would she be prescribed Lyrica.-We were told it would be bad for the dysautonomia and cause her to have more symptoms. Best of luck and be sure to be very careful of the Lyrica..... Susan

thanks for the info--Sara has had chest pain numerous times, we always suspicioned it was the dysautonomia, but no doctor would confirm it.....Guess maybe we were right after all.. Best wishes and gentle hugs,, Susan

Summer--Sara has had migraines in the past, but not so often now. She has so much pain in the occipital area, its hard to tell sometimes which is which....When she was a few years younger she had migraines fairly often. Gentle hugs and healing thoughts---Susan

Will your insurance pay for it with a PA? We have to get Sara's PCP to do a PA for her to get Medicaid to pay for it. Hope you find help with it, I know it is a wonderful med. Best of luck--Susan

Sara has some visual disturbances, and it is hard for her to describe how they affect her. I do know its hard for her to focus sometimes. And she goes blind (as in no vision at all) when she turns her head to far to the left or right. She has seen doctors about this, but so far there is no explanation. Susan

Sara "smells" smoke sometimes too. Occasionally other odors, but mostly smoke. Susan

Melissa, Sara had numerous tests in the urologists office, all with no anesthesia and she did very well with them. I will tell you some things will cause some discomfort, but she tolerated everything well. The cystoscope was probably one of the easiest on her. Gentle hugs, and good luck---Susan

I dont think Sara's occipital bones are enlarged, however she was diagnosed with occipital neuaralgia several years ago. She has had the shots in the occipital nerves more than once. Unfortunately, they were of no help. Gentle hugs and best wishes. Susan

Melissa--Thanks for your interest. Sara had blood drawn during a fever on Thrusday( we dont have the results yet) . She has also had draws just after a fever, when it had returned to normal. I try to educate myself so I may be able to help Sara and also help interact with doctors as she has problems forming and speaking her thoughts. To answer a previous question, she has not had a draw from her catheter on this round of fevers, however they have drawn from it when she would be going through the fever thing before. The insertion site looks good and there is no drainage from it. I know that does not mean there is not an infection in the catheter,though. She has had a staph infection in the catheter once before, and has been septic several times, so that is always a concern. I just get so frustrated and want to scream"Cant somebody DO something???" I know everyone here feels this way, but when its your precious child its somehow different. You know the old saying--When your child hurts, you hurt more--- Thanks for listening to me ramble......Susan

Ditto on the thanks, Melissa---These articles are written in a way that most anyone could understand...Maybe even some doctors who dont think POTS is a valid diagnosis, and heaven forbid you mention dysautonomia--- Thanks again, Susan

Well, here I am again, posting about Sara and her fever. It has flared again with her running as much as 103. She was sent for yet more blood work, xrays and urine test. I'm to the point of complete exasperation and frustration. I dont understand why something isnt found. Seems to me that if she is running that much fever, there must be an infection somewhere. However, I do understand that dysautonomia can cause a temperature fluctuation since it affects every system of the body. I guess I'm just being a Mother and want to fix things for my daughter. I totally HATE not being able to do something to make her quality of life be improved. Sorry to always be venting on here, but you folks are the only outlet I have for my feelings and I truly appreciate your understanding and compassion. At least I do have one bit of positive news... We got Sara a wheelchair this week. Will make taking her places so much easier. She gets so exhausted just walking into the doctor office, and going to a store or the mall is out of the question. Maybe I can get her out of the house some now. She needs to see something besides the four walls of the house. Sorry for the vent, folks, just needed to get it off my chest...... Gentle hugs to all Susan