RoughCollie Posted August 10, 2014 Share Posted August 10, 2014 . Quote Link to comment Share on other sites More sharing options...
Guest inoubliable Posted August 10, 2014 Share Posted August 10, 2014 Stephen is home from the hospital. An ambulance provided transport since there was no way to get him home otherwise. He is basically confined to the upstairs since he can't go up and down stairs, and there is no bathroom on the first floor anyway. He can stand and walk, but not for very long. He started eating more tonight, but not much. He feels pretty awful. He is drinking a lot, though. It takes me an hour and 10 minutes to change his dressings, "strip" the two drain tubes, and give him his meds. He said it takes me a lot longer than it did the nurses, and wondered why! Duh! I am not a nurse. I hope I speed up over time because this means 4 hours and 40 minutes a day of just doing this, since it is done 4x a day. Well, 3 times if the nurse comes daily. The visiting nurse is coming around 9 a.m. tomorrow, which will make both of us feel better. I think she is supposed to come every day, for how long depends on the insurance company. Stephen's bedroom and the upstairs bathroom are very clean. The rest of the house, not so much. There is no way I will have the time and energy to clean it before 9 a.m. I am exhausted right now. We have the bottom of the stairs gated so the dog can't go up there. He sits by the gate and whines because he has missed me so and is more eager than ever to follow me everywhere. We took him up on a harness and 12" leash, gated Stephen's doorway, and let them greet one another. We cannot take the chance that the dog will be over-exuberant, as is characteristic of his breed. Thank you all for your prayers and kind thoughts for us. We both really appreciate it! RC I must have missed something. :( I'm glad he's home from the hospital. I imagine that provides some relief and comfort for both of you. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 10, 2014 Share Posted August 10, 2014 Thank you for the update, RC! Praying that Stephen recovers quickly. :grouphug: One thing, though -- please try not to overdo it and exhaust yourself. Try to get other family members to pitch in and help. You need to take care of your own health, too. Quote Link to comment Share on other sites More sharing options...
Starr Posted August 10, 2014 Share Posted August 10, 2014 Oh wow! Watch the visiting nurse. Maybe you'll get some tips to speed things up a bit. His appetite will return eventually. Just keep giving him bites of something he loves. It's great he's drinking well. You are doing a great job!! Prayer continue for both of you. Quote Link to comment Share on other sites More sharing options...
happi duck Posted August 10, 2014 Share Posted August 10, 2014 (Hugs) Quote Link to comment Share on other sites More sharing options...
Mama Geek Posted August 10, 2014 Share Posted August 10, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
creekland Posted August 10, 2014 Share Posted August 10, 2014 :grouphug: Glad he's home and hope things continue to improve a bit (both time to do things and health). Can you relax and watch movies together or read a book out loud and discuss it or other similar things to take the mind off the "issues" a little? :grouphug: Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 10, 2014 Share Posted August 10, 2014 Glad you're both home! Quote Link to comment Share on other sites More sharing options...
Twigs Posted August 10, 2014 Share Posted August 10, 2014 :grouphug: :grouphug: :grouphug: Please take care of yourself or you will both be down. :sad: Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 10, 2014 Share Posted August 10, 2014 So glad that he's home, and that you had the ambulance do the transport! Hopefully the nurse will give you tips on how to manage the drain. It will get faster with time and practice. Is your DH or someone else going to learn to do it, too, in case you need a respite? Quote Link to comment Share on other sites More sharing options...
Annie G Posted August 10, 2014 Share Posted August 10, 2014 I hope you can get some rest and not feel that you have to jump in and do everything. Hope Stephen's recovery goes smoothly! :grouphug: Quote Link to comment Share on other sites More sharing options...
Flowing Brook Posted August 10, 2014 Share Posted August 10, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Annie G Posted August 10, 2014 Share Posted August 10, 2014 Can you elaborate on how the recovery period is going to be a year and require three more surgeries? It sounds like when he went in you thought it was going to be a six week recovery period and now it's turned into a year. It's astonishing to me that a surgery that requires a year to recover only comes with a day or two in the hospital. I feel for you- this has to be draining. Quote Link to comment Share on other sites More sharing options...
KatieJ Posted August 10, 2014 Share Posted August 10, 2014 Hugs and prayers for you and your family for strength to help Stephen and healing for Stephen. Have you heard of a wound clinic in your area? I don't know much about them, except that they exist in our area, and several families that have been helped by them. One of them was for her son who was severely injured in a car accident and had some wounds that needed extra care. Quote Link to comment Share on other sites More sharing options...
Only me Posted August 10, 2014 Share Posted August 10, 2014 Can you elaborate on how the recovery period is going to be a year and require three more surgeries? It sounds like when he went in you thought it was going to be a six week recovery period and now it's turned into a year. It's astonishing to me that a surgery that requires a year to recover only comes with a day or two in the hospital. I feel for you- this has to be draining. It amazes me how short hospital stays are now. My dd had major leg surgery and had plates and screws. She was in the hospital 3 days yet recovery took a year. She was bedridden for two months, had crutches for 4+ months and pt for 6 months then had another surgery 1 year later to have the plates and screws removed (only 1 night stay) followed by more crutches and pt. Prayers to OP and her son. Quote Link to comment Share on other sites More sharing options...
Annie G Posted August 10, 2014 Share Posted August 10, 2014 It amazes me how short hospital stays are now. My dd had major leg surgery and had plates and screws. She was in the hospital 3 days yet recovery took a year. She was bedridden for two months, had crutches for 4+ months and pt for 6 months then had another surgery 1 year later to have the plates and screws removed (only 1 night stay) followed by more crutches and pt. Prayers to OP and her son. Wow! I had no idea. I have been blessed to not have experience knowing these things. That's quite a recovery for a young person to cope with. Bet it's difficult to not become discouraged by the length of the recovery. Quote Link to comment Share on other sites More sharing options...
TammyinTN Posted August 10, 2014 Share Posted August 10, 2014 Big hugs to you both and prayers for a speedy recovery. :grouphug: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted August 10, 2014 Share Posted August 10, 2014 When can he expect for all the tubes to come out so he can be more comfortable? Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted August 10, 2014 Share Posted August 10, 2014 Sending heartfelt prayers to you and your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
idnib Posted August 10, 2014 Share Posted August 10, 2014 Don't worry about the house, it'll wait. You'll get faster as you go. My mom had to wrap my dad's leg everyday and she speeded up after she figured out some techniques and became more comfortable with it. :grouphug: Quote Link to comment Share on other sites More sharing options...
VeteranMom Posted August 10, 2014 Share Posted August 10, 2014 I suggested the home health in the other thread about the hospital stay and didn't see this post. I'm so happy you have someone coming to help you. I hope she has a good heart and will spend a lot of time helping you to feel more settled. Please, post about how the home health visit goes? Quote Link to comment Share on other sites More sharing options...
Kareni Posted August 10, 2014 Share Posted August 10, 2014 Thanks for the update. Sending good thoughts to you all. Regards, Kareni Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted August 11, 2014 Author Share Posted August 11, 2014 The drains will be out in 3 weeks. We have an appointment with the surgeon on 8/21, and I hope the drains can come out then. I talked to the plastic surgeon's nurse today. The questions I asked must have alerted her because she asked me which floor my son had been on. When I told her, she said, "That explains it. My grandma was a patient on that floor a few weeks ago." I asked for another script for pain meds. The twit of a physician's assistant then told the nurse my son shouldn't need them because "he's only been out of the hospital for a day". Well, he'd been out for 2 full days, and had been prescribed 15 pills. He takes 2 every 6 hours, starting at 3:30 pm Saturday. So at 3:30 this morning, after his pills, he had 1 left. It took all that was in me not to tell the nurse to tell that twit that if she can't do the math on this, to give me a call. Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted August 12, 2014 Author Share Posted August 12, 2014 Can you elaborate on how the recovery period is going to be a year and require three more surgeries? It sounds like when he went in you thought it was going to be a six week recovery period and now it's turned into a year. It's astonishing to me that a surgery that requires a year to recover only comes with a day or two in the hospital. I feel for you- this has to be draining. Yes, I can tell you exactly what the plastic surgeon told us after the surgery. He has never seen a case like this in which the patient did not have 3-4 more surgeries during that year due to infections in the wound area (inside the body, I presume). He said to expect it because it is going to happen. Well, I hope not. Meanwhile, my son is scared to death of going through this again several times ... he is really traumatized by what the surgeon told him. Plus, the surgeon didn't tell him that until five minutes before my son was wheeled to the OR. Now my son has major anxiety about germs because he is sure that if I am not *extra, extra* careful, he will get an infection. During his sponge bath today, he would not let me use water from one of the sinks because he is convinced something is wrong with it. He turned on that faucet a few weeks ago and the water didn't taste right. So I used the extra sink, and then went over his skin with witch hazel, telling him that would take away any errant germs. Now I'm going to have the water tested to make sure our well hasn't been contaminated, and to set his mind at ease. The general surgeon (who actually removed the cyst I found out today) said 6-9 months and did not mention more surgeries. He was the one we talked to while my son was in the hospital because the plastic surgeon "never visits patients in the hospital" according to the nurses. HIs twit of a physician's assistant came once. The general surgeon said that the minute my son is healed, we must get laser hair removal in that area to kill all the follicles in hopes that the cyst won't recur. He said there have been no studies done on this, so the insurance companies won't cover it. It is known that these cysts get started from hairs that grow into the body, so no follicles means no hairs growing in the wrong direction. He thinks that will work, and we are going to try it if we can come up with the $1-$2K it costs. My son has 49 staples and about 20 stitches and a glued incision that is about 5" long. The cyst was so big that after they removed it, they had to take some muscle from somewhere else (I assume gluteous maximus) to fill in the space. I'll say this -- his wound doesn't look like a plastic surgeon had anything to do with it. But this was also reconstructive surgery, so let's hope the inside looks better! And that is the sum total of what I know. If I get some time during the day, I'm going to call the hospital for a copy of the medical records. Hopefully that will shed more light on the situation. I tried to get an appointment with the general surgeon, who is a great guy, but he said Stephen has to see the plastic surgeon first. There is some protocol there but he didn't go into details. I didn't even know the general surgeon was involved in this, and neither did his office staff either before surgery or today when I called. I was told by the staff when I called with pre-surgery questions that he merely referred my son to the plastic surgeon. Then during one of the times DH spent 2 hours at the hospital, the general surgeon came by to see him. DH said wasn't that nice that he stopped by to visit. Well, I wasn't born yesterday, and I knew this wasn't a social call. The next time he showed up, I asked why he was there, and sure enough, he assisted with the surgery. I still feel in the dark -- things aren't adding up for me. I asked DH what the surgeons said to him during the appointments before the surgery, and he is vague about it. From now on, I am going to every appointment with DH because what are obvious questions to me are things he does not ask or, if he is told, he doesn't remember what was said. DH and I are lawyers, and the surgeons know that. I'm wondering why I am getting the run-around, and I am going to look into this very thoroughly, both from a medical and a legal perspective. Quote Link to comment Share on other sites More sharing options...
Snow Posted August 12, 2014 Share Posted August 12, 2014 :grouphug: Wow, I didn't see this before. Prayers and good wishes to you both. Quote Link to comment Share on other sites More sharing options...
clarkacademy Posted August 12, 2014 Share Posted August 12, 2014 I missed it as well!!! Hope things get a bit easier for you guys really soon Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted August 12, 2014 Author Share Posted August 12, 2014 So do you all think I'm off base? Does any part of this story seem strange to you? For me, red flags are popping up. Quote Link to comment Share on other sites More sharing options...
Snow Posted August 12, 2014 Share Posted August 12, 2014 Yes, I would absolutely have questions. 3-4 more surgeries?? I would definitely request a detailed sit down review of the details of the surgery and if I still had questions I would ask for the hospital administrator to review. There could be a reasonable explanation or not, but you deserve to get the questions answered. Quote Link to comment Share on other sites More sharing options...
chocolatechip Posted August 12, 2014 Share Posted August 12, 2014 Yes, I would absolutely have questions. 3-4 more surgeries?? I would definitely request a detailed sit down review of the details of the surgery and if I still had questions I would ask for the hospital administrator to review. There could be a reasonable explanation or not, but you deserve to get the questions answered. This. Agreed 1000x. So sorry you all are going through this. :grouphug: Quote Link to comment Share on other sites More sharing options...
Snow Posted August 12, 2014 Share Posted August 12, 2014 I missed the first post about this I think. This was for removal of a cyst?? Quote Link to comment Share on other sites More sharing options...
idnib Posted August 12, 2014 Share Posted August 12, 2014 So do you all think I'm off base? Does any part of this story seem strange to you? For me, red flags are popping up. I'm not sure what you mean. I do think they are being cautious because you are lawyers. I do think they are not doing a good job communicating. I don't think they've done anything medically unnecessary and I do think they're telling the truth that there could be further infections. Quote Link to comment Share on other sites More sharing options...
Cera Posted August 12, 2014 Share Posted August 12, 2014 It is always worth looking into what happened when you have that gut feeling about something. I have found that my mother's intuition is rarely wrong. It may not be anything sinister, they may just be nervous because so many people sue for no real negligent or criminal reason now because they don't like the outcome, but it is worth trying to find out. Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted August 12, 2014 Share Posted August 12, 2014 Pilonidal cysts have sinuses (hollow tubes/fingers) that run off of them. They can be very extensive, even attaching to your intestines, etc. When they do the surgery, the goal is to remove every bit of it to decrease the chance of a recurrence. I missed the first post about this I think. This was for removal of a cyst?? Quote Link to comment Share on other sites More sharing options...
Ewe Mama Posted August 12, 2014 Share Posted August 12, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted August 12, 2014 Share Posted August 12, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
MBM Posted August 12, 2014 Share Posted August 12, 2014 It sounds like you are not getting enough information about pilonidal cysts and surgery. Ask your surgeons for proof about the success rates with each successive surgery. I am betting they will hem and haw. Anyway, you will want to do what you can to help your son avoid another surgery. At this point, probably the best you can do is learn as much as possible about the ways people have helped themselves. You might have already seen this site but in case you haven't, the following forum could be helpful. I'll link this post which could be helpful for your son at some point once his wound heals. http://www.pilonidal.org/xfforums/index.php?threads/a-thank-you-a-story-and-a-remedy-to-try.7755/ The laser hair removal is probably a good idea but go to someone who has done this a lot and on patients with pilonidal cysts. I hope your son's wound is improving. I hope also that you have someone to help you. You have your hands full enough. :grouphug: Quote Link to comment Share on other sites More sharing options...
MeghansMom Posted August 12, 2014 Share Posted August 12, 2014 Glad surgery went well and he is home. Prayers for a speedy recovery. Quote Link to comment Share on other sites More sharing options...
Annie G Posted August 12, 2014 Share Posted August 12, 2014 I'm so sorry that your son is now anxious about germs- it's easy enough for you to tell him he's safe but quite difficult for him to wrap his mind around that concept. Oldest dd had a real problem with germs for years and it was emotionally very draining. I know nothing about these cysts but if it's caused by ingrown hair follicles and he's had a recurrence, why would the insurance not pay for the laser removal with a doctor's order? That seems nuts. Oh, wait. Nope...just because it seems like a valid treatment to avoid a recurrence does NOT mean an insurance company is going to pay. Arrgh. Annoying!! Hope you get some answers from the general surgeon - sounds like he's got a way better bedside manner and will explain things to you. The plastic surgeon might have fabulous skills but his communication skills suck. I guess the cyst growing back wouldn't surprise me but infections from the wound WOULD. This isn't a third world country and you're providing wound care. Seems bizarre to assume it's going to get infected, and even more bizarre to deliver that message either right before or right after the surgery. :grouphug: Quote Link to comment Share on other sites More sharing options...
Snow Posted August 12, 2014 Share Posted August 12, 2014 Hope you get some answers from the general surgeon - sounds like he's got a way better bedside manner and will explain things to you. The plastic surgeon might have fabulous skills but his communication skills suck. I guess the cyst growing back wouldn't surprise me but infections from the wound WOULD. This isn't a third world country and you're providing wound care. Seems bizarre to assume it's going to get infected, and even more bizarre to deliver that message either right before or right after the surgery. :grouphug: I didn't realize that these type of cysts are prone to reoccurrence, but I agree with this. Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted August 12, 2014 Author Share Posted August 12, 2014 Well, I know what happens to lawyer's kids. One of our friends has a son who has a serious medical condition. A few years ago he was in the hospital and had a paper chart on which "Lawyer's Son" was written in red marker across the top. :lol: Here is what makes me nervous: Our own general surgeon's staff had no idea that he was involved in my son's surgery at all. The woman who answered the phone didn't want to make an appointment for him because the doc merely referred him to someone else. I said that is not true, he participated in the surgery. She checked with "the nurses" and they didn't know anything about it either. My husband didn't know either; he thought the general surgeon was visiting Stephen out of the kindness of his heart. I knew that wasn't true. The general surgeon is a very personable guy, and a very good surgeon, and has a great reputation. But he isn't visiting people for fun, so I was not surprised to find out he had done part of the surgery. I also wasn't unhappy about that -- this guy is good at what he does. The person who makes me nervous is the plastic surgeon, and it is solely because of the circumstances. He did not meet my son and DH until right before surgery. He is too busy to meet with patients pre-surgery or at the hospital after surgery. I called and sent an email with questions I had, and I did not get a response. I forwarded the email to the surgeon, and still did not get a response. When we talked to him, it was for 5 minutes (signing consent form right before surgery), and for 2 minutes (post-surgical report). I think that is a very strange situation. Two of my sons have had 13 surgeries and I've had plenty myself. Never has this type of situation occurred. Also, the plastic surgeon's PA makes me nervous. I was told that she has lots of experience and knows everything about the surgeries the guy does, and has all the information patients need, and therefore it is not necessary for this very busy surgeon to meet patients himself. I met her. She is a ditz. No one in his or her right mind would trust her unless they are one of those people who blindly trusts everyone in the medical profession. She was clearly informed by me and by the doctor's orders that my son takes 2 percocet every 6 hours. She knew that he has a low pain threshold and whatever the reason is, he has Asperger's and that is not uncommon. So she sent him home with meds that ran out when I gave him his Monday at 3:30 AM dose. (Luckily, we had percocet left over from DH's recent dental surgery.) When I called the surgeon's office to ask for another prescription, they called me back. The PA said she sent him home with plenty of meds and he had only been home for one day. Well, he'd been home for 2 days, and simple math (4x a day x 2 pills x 2 days = 16 pills, not 15) would have told her that I had one pill left after the 3:30 a.m. dose. (The 9:30 AM dose would have been the final one in a 48 hour period.) Had she listened to me, she would have known that I have plenty of experience with post-surgery pain, especially with this son who has had 4 major surgeries. She would have known that we always move to one percocet ASAP, but that does not mean I'm going to leave my son in level 7/8 pain just so I can say he's only taking one pill at a time. She would have realized that I know the risks of taking percocet -- addiction, tylenol risks -- and that I am fully informed about that and it is not going to be a problem in the circumstances. At no time did she answer any of my questions with answers that showed she listened to me. Her responses were vague and had nothing to do with this surgery or this patient. Kind of like when you adopt a dog from a rescue. Has the dog ever bitten anyone, the potential adopter asks. Oh, you don't have to worry about that, says the rescue. That is not an answer. At no time did she or anyone else ever respond to my questions about using a different painkiller for my son. It is like other painkillers don't exist, when I know they do. How do I know about painkillers? Because my husband has represented several doctors who are in prison for dispensing them to anyone who has cash, including recently. Where is the information we have from? The FBI and the DEA, and many expert witnesses who are physicians. Also because of being informed by my own surgeons over time, and because I do the research on everything so that my consent is fully informed. Also, her demeanor was not a professional one. It was a combination of being ditzy and being in a rush. She was sweet -- she offered to come and see my son on Saturday, her day off, and she lives an hour away. I didn't take her up on that offer because there was no point. This may all be because the plastic surgeon is an extremely busy man. He has 6 offices, and his website is all about cosmetic surgery and ancillary beauty services like facials. Honestly, it's a large business with one doctor and lots of support staff. Basically, red flags go up for me when I ask a direct question that requires a direct response, and I don't get it. Has the dog ever bitten anyone? That requires yes, no, or IDK as a response. Red flags go up when I attempt to get factual information and am either ignored or given a response that is unsatisfactory unless I am a blindly trusting person. Oh, you want to cut open my son and it's for a good reason? Have at it. This has only happened to me in my entire life in this small town. I don't ever play the lawyer card. Well, once I did. I went to see my own physician for a physical. It was the first time I'd ever met the man. He treated me like I had seen other people being treated by doctors in this town. Minimal explanation in words of one syllable, expecting no questions because patients should trust and respect their doctors (and do). I brought him up short and told him my expectations and credentials. We get along great now. This is a strange little town. Perhaps common, but this is the first time I've lived in a small town or spent any time in one. Very conservative, very authoritarian in culture, generally uneducated population compared to national statistics. I have never heard anyone question an authority figure, but I've heard plenty of remarks about it when I do ... most of them along the lines of don't you think that is rude?, what did s/he say when you said that? did s/he get mad at you? I can't believe you asked her that! Bizarre. I think the culture around here is part of my problem. It makes me nervous. After 5 years, I feel like a stranger in a strange land ... So, I don't play the lawyer card, and I don't act like a horse's behind. You catch more flies with honey, is my motto. It is a PITA, but much more effective than scaring people half to death. I am very good at being friendly, personable, caring, polite, and appreciative of every little thing ... even when I want to bite someone's head off. It has to be a really BAD situation for me to bite someone's head off, and I can't recall the last time it happened. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted August 12, 2014 Share Posted August 12, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
melmichigan Posted August 12, 2014 Share Posted August 12, 2014 Around here the general surgeons often assist the plastic surgeons, but all follow-up care is handled by the plastics team. Plastics is a very specialized area and they are often very individual and specific on what they will and won't order so it would be very rare for a general surgeon to write orders for a patient under the care of plastics. (Kind of like poking the hornet's nest if you get what I mean.) It doesn't sound like your son had a good pain management plan in effect in the hospital, or for discharge. The nurses did a poor job of informing you in the hospital from your other post and the plastics staff doesn't seem to understand the needs of your child. I would press the matter with the office. Different people handle pain differently and the staff need to adjust their expectations so that your son is comfortable. They should have also discussed OTC or prescription meds that could help with pain without interfering with the Percocet and help ease the need for it. They are dropping the ball. I hope you can get your sons needs addressed and that he has an uneventful recovery. Quote Link to comment Share on other sites More sharing options...
MBM Posted August 12, 2014 Share Posted August 12, 2014 I guess the cyst growing back wouldn't surprise me but infections from the wound WOULD. This isn't a third world country and you're providing wound care. Seems bizarre to assume it's going to get infected, and even more bizarre to deliver that message either right before or right after the surgery. :grouphug: I think the reason the surgeon has said more surgeries are likely is not because the wound will become infected but that a blockage might recur which could lead to an infection. Here is a fairly simple explanation of what causes pilonidal problems. http://www.pilonidal.org/education/howugotit.php Quote Link to comment Share on other sites More sharing options...
mumto2 Posted August 12, 2014 Share Posted August 12, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Anne Posted August 12, 2014 Share Posted August 12, 2014 So do you all think I'm off base? Does any part of this story seem strange to you? For me, red flags are popping up. Definitely red flags. You have a right to have detailed, specific information. :grouphug: Anne Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 12, 2014 Share Posted August 12, 2014 So do you all think I'm off base? Does any part of this story seem strange to you? For me, red flags are popping up. :grouphug: Do you have a post-op follow up scheduled? I would make sure to attend that one, and all appointments, taking notes. Some people have a hard time with asking questions of docs and relaying answers, and it sounds like your DH and son have had a hard time getting/relaying info. Going from a 6 week recovery to a year recovery + 3 to 4 more surgeries is a major change, and warrants a fairly extensive post op appointment to discuss changes and findings, I would think. When you call to schedule the appointment, could you ask to be booked for double time? You may need to pay for the extra time out of pocket, but it would be worth spending time with the doc feeling less rushed. Most doc's offices will allow that, though it's not the norm, and I have had docs thank us for booking it that way, when it's something that will take a significant amount of time. I'm sorry your kiddo is having anxiety about germs. :( I might, too, in his shoes. Would he feel better if you used some kind of bottled water in cleaning the area? I don't think that's going to be any better (and maybe worse) than the water you have, but maybe it would ease his mind some? And in easing his mind, it might make the stress of cleaning the drains less for you. Quote Link to comment Share on other sites More sharing options...
Cera Posted August 12, 2014 Share Posted August 12, 2014 Given the additional information I think I would call the office and demand to speak to the doctor himself. I would simply explain that the care and information I had received thus far was inadequate and I expect that to be remedied or I will need to begin a formal grievance process to get what I need to properly care for my son. Quote Link to comment Share on other sites More sharing options...
Starr Posted August 12, 2014 Share Posted August 12, 2014 Have someone stay with ds and march into the office and get a prescription. Throw a fit if you need to. Or go see one of your other doctors. Someone will help you out if you are loud enough. Have you contacted the discharge/patient advocate person at the hospital? Just a few thoughts for the pain control. I'm wondering if due to the nature of the cyst that they often need more surgery just due to the nature of the beast. And this guy just has bad bedside manner and doesn't explain it well. Have you read up on these? Hopefully he will heal well and it will be the end of it. Have you seen the visiting nurse? They should be able to evaluate pain and contact the doctor as well. Other option, find someone with leftover pain meds from their dental surgery. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted August 12, 2014 Author Share Posted August 12, 2014 Well, I'm not going to threaten anything at this stage because it will be counter-productive and cause resentment instead of openness and cooperation. Just knowing we are lawyers is, unfortunately, threat enough. If doctors would just not ask what we do, we wouldn't tell, or at least I would keep my mouth shut. We do have an appt in 2 weeks with the plastic surgeon. I am going to call today and see if he will actually attend the appointment. If the PA is there instead, I will firmly direct the conversation. If she has knowledge, which I bet she does, I will have to pull it out of her! I am also going to make sure she directs questions about my son to my son, and that she listens to his responses and concerns and answers his questions. Spryte, the nurse uses saline solution to clean the skin inside the circular incision. I use an antibacterial wipe for this since it is just untouched skin. I have been told by multiple medical people at the hospital and the doctors' offices not to clean the incisions at all. I do use the wipes to clean the glued incision and the stitched incisions -- only the part with 49 staples is untouched by me. I am to put Bacitracin with zinc on it 4 x a day, covered the entire area with gauze pads overlaid with abdominal surgery pads. Cleaning the drains is no big deal. I put the same ointment around the drains and cover that with a split gauze pad. Otherwise, it is just a matter of squeezing the liquid in the tubes into the plastic bottles at the end of the tubes, and emptying those bottles. If I were a nurse who had to take care of 5 surgical patients, it would drive me nuts to have that job because it would be a never-ending procession of changing dressings. My entire day is set up around dressing changes. I can't believe how much time it takes to take care of him. I barely have time to get anything else done. He is dependent on me for everything, so I am cheerful about it because I don't want him to be his usual considerate self and not ask for what he needs because he doesn't want to impose on me. I have taken care of my kids through at least 13 surgeries, some major, some minor. BUT for some reason the amount of care it took in the past seems to have been wiped from my memory banks. He feels better today than he did yesterday -- so that's two improvements in how he feels since he came home. Still, it has to be terribly frustrating for him. I did talk him into letting me shave his head -- clipping his hair down to 1/2" inch so I can wash it. He can't bend over or take a shower or a bath, and he has thick, curly hair which will otherwise be impossible to keep clean. This is a Big Deal. The last time any of the boys let me clip their hair, DH didn't recognize DS2 (he was nearly bald) and no one was happy with the results. My saving grace is that our dog doesn't know when he has a bad haircut. The kids wish I'd hang a permanent sign around my neck: Do Not Let This Woman Get Near You With Clippers or Scissors! I declined to wear the sign in case the dog can read. :-) And he talked me into not using the apricot scrub on his face again. I have this cool little electric facial brush for sensitive skin that I'm going to use instead. I'll trade not using that in exchange for him letting me shave his abundant facial hair. Then I'm going to threaten my other kids with bodily harm if they mention it, because hairy boy is hairy because he hates it when people make a big deal over him getting a haircut. His brothers have been trying to convince him to shave for a couple of years. My approach may work. You all are so sweet to keep talking with me about this. I can't talk to anyone IRL because it will get back to the college kids and pretty soon the entire school would know about my son's private business. He would HATE that, and so would I in his position. Information spreads like wildfire in small towns. Oh, and I know a lot about pilonidal cysts ... I have had 2 operations for them, and so has DH. We did not know they could be so gigantic though, and require such extensive surgery. Quote Link to comment Share on other sites More sharing options...
Starr Posted August 12, 2014 Share Posted August 12, 2014 So do they grow back or is it hard to get the whole cyst? I can't remember much about them from my long ago nursing days. It does make me crazy. In the olden days he would have stayed in the hospital for some time and nurses would have cared for him while you held his hand. :grouphug: Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.