RoughCollie Posted August 7, 2014 Share Posted August 7, 2014 I am asking for prayers, good thoughts, whatever you have, for my son Stephen. He is having surgery tomorrow morning -- it is reconstruction surgery by a plastic surgeon because the both sites of the original surgery (last year) have become infected. He is having a skin graft done, too. He will likely spend at least one night in the hospital. Full recovery takes 6 weeks. I am going to do my best to get a visiting nurse to come to our house every day for the first couple of weeks. I am not a medical professional and I want to be absolutely certain that his wound is healing properly. Back in the 80's, Stephen would have been in the hospital for at least a week after this surgery. Now they send them home the same day or the next day, depending whatever they want it to depend on, I guess. Basically, IMO, they are foisting the professional nursing care off on the family. Having a visiting nurse will set my mind at ease since I am not a nurse. Last year, we didn't have a visiting nurse and I sure wanted one, really anyone who didn't have to look up how to change dressings on the internet and who can recognize a problem before any idiot (me) would! Thank you for your prayers and good thoughts! RC Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted August 7, 2014 Share Posted August 7, 2014 Praying. Quote Link to comment Share on other sites More sharing options...
Anne in CA Posted August 7, 2014 Share Posted August 7, 2014 Praying. This sounds very stressful. :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted August 7, 2014 Share Posted August 7, 2014 Praying, RC Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted August 7, 2014 Share Posted August 7, 2014 Praying for Stephen (and you)! Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 7, 2014 Share Posted August 7, 2014 Praying here, RC. :grouphug: Quote Link to comment Share on other sites More sharing options...
DawnM Posted August 7, 2014 Share Posted August 7, 2014 Praying. Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted August 7, 2014 Share Posted August 7, 2014 Praying. Quote Link to comment Share on other sites More sharing options...
Myeightkiddies Posted August 7, 2014 Share Posted August 7, 2014 Praying! :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Robin M Posted August 7, 2014 Share Posted August 7, 2014 Praying Quote Link to comment Share on other sites More sharing options...
Twigs Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Corraleno Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
chocolatechip Posted August 7, 2014 Share Posted August 7, 2014 Prayers for you all. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
fraidycat Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: Many good thoughts for an easy surgery and full healing this time around. Quote Link to comment Share on other sites More sharing options...
Katy Posted August 7, 2014 Share Posted August 7, 2014 Praying. Quote Link to comment Share on other sites More sharing options...
Tap Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
idnib Posted August 7, 2014 Share Posted August 7, 2014 I hope it goes well. :grouphug: Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted August 7, 2014 Share Posted August 7, 2014 Sending prayers to both of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted August 7, 2014 Share Posted August 7, 2014 Praying. Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
happi duck Posted August 7, 2014 Share Posted August 7, 2014 (Hugs) Quote Link to comment Share on other sites More sharing options...
Suzanne115 Posted August 7, 2014 Share Posted August 7, 2014 Praying for you both. Suzanne Quote Link to comment Share on other sites More sharing options...
idnib Posted August 7, 2014 Share Posted August 7, 2014 RC, how did it go? :grouphug: Quote Link to comment Share on other sites More sharing options...
jrn Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted August 7, 2014 Author Share Posted August 7, 2014 Thank you all for your prayers, hugs, and healing thoughts on behalf of my dear Stephen. He is out of surgery now, and has been admitted, thank heavens. He did not have to have a skin graft, which is great because the nurses told me that grafts are much more painful than the surgery itself. Stephen is in some pain, but refused extra meds because he is so nauseated. He is not very happy, so I sent two of my kids home for the afternoon. One of my sons is going to spend the night here so I won't have to. Now, here is the absolutely astonishing thing. When we all spoke to the surgeon afterwards, I asked how long the recovery period would be -- because college starts in 18 days. Apparently DH and Stephen had never asked, but assumed it would be the same as last year. No! The recovery period is *one year*. Poor kid will very likely have to have 3-4 more operations during that year. The number of further surgeries per patient averages three. The surgeon said that no matter what, Stephen will miss this entire school year. I will get to the bottom of this, for sure. I want to know everything. But first I have to take care of my boy. Thank you again! RC Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted August 7, 2014 Share Posted August 7, 2014 Oh RC! I'm so glad that you asked. But it will work out. Getting him healthy is the important thing. Quote Link to comment Share on other sites More sharing options...
idnib Posted August 7, 2014 Share Posted August 7, 2014 Now, here is the absolutely astonishing thing. When we all spoke to the surgeon afterwards, I asked how long the recovery period would be -- because college starts in 18 days. Apparently DH and Stephen had never asked, but assumed it would be the same as last year. No! The recovery period is *one year*. Poor kid will very likely have to have 3-4 more operations during that year. The number of further surgeries per patient averages three. The surgeon said that no matter what, Stephen will miss this entire school year. Wow wow wow. I'm glad he's doing well. Quote Link to comment Share on other sites More sharing options...
Starr Posted August 7, 2014 Share Posted August 7, 2014 That's rough! But glad to hear no skin graft and that he's doing well. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted August 7, 2014 Share Posted August 7, 2014 I'm sorry to hear about the long recovery. I'm sure it's going to take some time to process that. I can't imagine. I'm sorry for his pain but I'm glad he's recovering. Quote Link to comment Share on other sites More sharing options...
jaderbee Posted August 7, 2014 Share Posted August 7, 2014 That is a shock. I'm glad he's out and doing ok. I hope you can work something out with his college so he won't miss a full year. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted August 7, 2014 Share Posted August 7, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest Posted August 7, 2014 Share Posted August 7, 2014 Oh my word! That recovery time! I am happy he is doing well, and i'm sure you will navigate the recovery and his college delay, but that is a shock! Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted August 8, 2014 Share Posted August 8, 2014 Oh my. I'm glad he's made it through surgery OK. I am surprised that the surgeon did not give all the information about recovery. That is part of their job. Praying for a speedy recovery and peace for all of you as you navigate this change in plans. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 8, 2014 Share Posted August 8, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted August 8, 2014 Share Posted August 8, 2014 Glad this surgery seems to have gone well. I will pray for Stephen's recovery and for you as you care for him and help sort through what the next year or so will hold. Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted August 8, 2014 Author Share Posted August 8, 2014 This all started nearly 1.5 years ago, when Stephen had a pilonidal cyst surgically removed. The surgery cures the problem 50% of the time -- and the recovery period is 6 weeks. I was against the surgery, but no one else was, because of the low success rate. The cyst came back about 6 weeks ago, and S was treated with 3 different antibiotics, which did no good. So he had to see the surgeon, who referred him to a plastic surgeon. Meanwhile, S said he felt fine, wasn't in pain, and basically clammed up -- which is odd because he has Asperger's, a very low pain threshold, and he never lies. Yet I thought he seemed sick (a feeling) and even DH noticed that. I tried to get S to talk to me about it, but he wouldn't -- which is always difficult when something bothers him. They decide to do the surgery again, and I find out about the skin graft which is necessary because the area of the original cyst plus the area where the drain was are both infected. Ok, I'm not happy, but it is necessary so I'll roll with it. S won't talk about it, and DH is acting like this is same song, second verse. S is 20, so HIPPA stands between me and finding out anything directly. The plot thickens. Yesterday, when the surgeon said the recovery would be a year and S would need 3-4 more surgeries, I was in shock or something. We walked out the conference with the surgeon -- which was very short, he was in a hurry -- and DH went to work. S was still in recovery and I was just aghast. I couldn't believe it. They wouldn't let me see S for an hour. My kids were with me, thank goodness. I just told the kids not to say a word to S, we would wait until the time was right to tell him - IOW, not right after surgery. It was too early to call Jean in Newcastle because of the time difference. So I called a local friend who knew about the surgery. To my surprise she said she would be at the hospital in 10 minutes, and she was. I'm wondering why she would do that. It turned out to be a good thing. I talked to her and that grounded me. Then S was taken to his room, and he was in pain and terribly nauseated, and I had to beat the drums to get them to give him more morphine. He was in bad shape. The nurse changed his dressings and I saw this huge wound about 18" in circumference with 2 drains. S didn't want anyone to talk -- for some reason that bothered him. So DS3 and I just sat there silently until DH came at 7, and sat there silently with him for 1.5 hours while I took the kids to dinner. Then DS1 stayed at the hospital all night with S and the rest of us went home. Naturally, one of the surgeons came after I left. There were 2 surgeons -- a general surgeon and a plastic surgeon. The general guy operated on S last year. He told DH that S had the worst, most pervasive internal infection the two surgeons had ever seen. I asked DH about the recovery period. He and S were prepared for it before surgery. It came up as a possibility when the plastic surgeon was having S sign the informed consent paperwork. It wasn't something that was expected to happen, and DH didn't tell me because he figured it wouldn't happen. A speeding train could be headed toward DH, and he'd figure the train would veer off and miss him ... and that's how DH is thinking about S. None of this is going to happen, S will be fine in 6 weeks. So, I have questions. DH doesn't ask them because, I suppose, it might ruin his the train will veer off scenario. What was infected? It wasn't organs or muscles. There must be spaces between things that held the infection. Why were muscles moved - what the heck does that mean? IMPORTANT OBVIOUS QUESTION: What caused the infection? Is it a drug-resistant bacteria? Is this a worry since oral antibiotics -- several different ones -- did nothing? Why are the surgeons certain S will have 3-4 more surgeries this year BECAUSE the infection will return, starting within 3 months? Then there are the more minor things -- setting up a visiting nurse to come every day until those drains are out. I don't think I should be solely responsible for wound care. S was in agony when the nurse took care of the drains when she was changing his dressing. She warned him it would hurt a lot. Am I supposed to fiddle around like I had to do last year, a total amateur, and possibly hurt him more, 4 times a day? I realize even with a nurse, I'll be responsible for S's care, but at least a trained professional will be overseeing things. It won't be like the blind leading the blind. And how am I going to get S home if they release him today, like they said they would? How will I get him in the car without him being in pain? How will he sit? Is there room to lie down? Will every bump in the road cause him agony? How will he get upstairs to his room? Our bathroom is on the second floor -- there isn't one on the first. Who is going to tell me what is going on? I've never lived in a place in which doctors tell patients and their families a slimmed-down version of events in words of one syllable. I know several people who have had major surgery and they know virtually nothing about their condition or the surgery. The patients don't ask, and the doctors don't tell -- it's a "the doctor knows best" town! My own doctors don't do that because I tell them to stop talking to me like I'm stupid. I tell them my educational and professional credentials and they come around quickly. I still find it hard to believe that I have to do that! I want to know Everything and I intend to find out. DS1's 1:30 AM report from the hospital: Stephen woke up. He's high on morphine and rapping Thug's Mansion by Tupac, so that's interesting. 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*Lulu* Posted August 8, 2014 Share Posted August 8, 2014 Oh my stars! RC, that would make me absolutely insane with worry. My sister and I constantly have to deal with this lack of questioning by some of our family members who tend to leave appointments with no clear idea of what is going on. Maddening. Simple maddening. I hope you are able to get some answers before they release him. (((Hugs))) and prayers for both your son and you. Quote Link to comment Share on other sites More sharing options...
Cera Posted August 8, 2014 Share Posted August 8, 2014 Would your ds be willing to sign a medical power of attorney for you so that you can have full access to his doctors? It sounds like that might be a good idea at this point so you can ask the questions that need to be asked and get the information about his condition that you need. Quote Link to comment Share on other sites More sharing options...
Suzanne115 Posted August 8, 2014 Share Posted August 8, 2014 I am so sorry for what you are going through. I will continue to pray for you and Stephen. Suzanne Quote Link to comment Share on other sites More sharing options...
J-rap Posted August 8, 2014 Share Posted August 8, 2014 Wow, I am so sorry about all that is going on with your son and ALL of you as a result! I would have so many questions too, and you have a right to ask all of them and get full answers NOW. Is it possible that the first surgery was botched? It just seems like something went really wrong. I wonder if someone from the hospital in the area of patient relations could help you navigate all of this. I'll be praying for your son as he heals and for you to get all the answers. (One of my daughters has a pilonidal cyst and we had at one time considered surgery. I had thought it was a relatively minor surgery!) Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted August 8, 2014 Share Posted August 8, 2014 You need to talk to the hospital social worker as well as the doctor's. Where I live, a conscious person can give consent for HIPPA to be waved for a spouse or parent. Now call me! Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted August 8, 2014 Share Posted August 8, 2014 Since your son is on the spectrum, I would insist that he sign a HIPPA waiver immediately. My boys have signed them at our family doctor and at school and I encourage them to sign one if they are conscious if they ever need medical care. Second, I would call and insist on a meeting with the surgeon where you can be there and come with questions. Don't let them back down. Since your dh is not capable of advocating for your son and your son is on pain meds (not event taking into account his Aspergers), you need to be the one they talk to. Definitely get the social worker involved. Do not allow your son to sign any discharge papers without the social worker present. Quote Link to comment Share on other sites More sharing options...
bzymom Posted August 8, 2014 Share Posted August 8, 2014 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: I feel so badly for your poor guy and for you! What a nightmare. I agree with PP. Get the waiver signed, gather your questions, and insist upon a meeting with the surgeon to get answers. If surgeon doesn't make himself available, contact patient advocate at the hospital for help lighting the fire under them. I will keep you all in my prayers. And I hope the train gets quickly back on track. Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted August 8, 2014 Share Posted August 8, 2014 ((((Hugs)))) So sorry you are having such a challenging time with the doctors :( You will continue to be in my prayers. Quote Link to comment Share on other sites More sharing options...
happi duck Posted August 8, 2014 Share Posted August 8, 2014 (Hugs) Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted August 8, 2014 Share Posted August 8, 2014 I am so sorry that Stephen is going through this. I pray that he will heal completely with no further complications. My oldest had surgery for a pilonidal cyst/sinus 15 years ago. He had a closed incision which opened up and then had to be packed for about a month so it could heal from the inside out. His has come back and has given him a lot of trouble over the years, but he has not wanted to have surgery again because he didn't feel like it would solve the problem. About 7 months ago my 18 yo started having bloody drainage and he kept telling me that it was just a scab or something. I finally told him that it wasn't normal and he would have to show me the area. Turns out he had the sinuses and a cyst as well. I did not want to do the surgery, either, but the Dr. said that since he had a chronically draining sinus it would have to be done. I researched the surgery because I did not want the same result as my oldest had. I decided that a cleft lift procedure would be most likely to have a favorable outcome. I then found a surgeon an hour and a half away that did that procedure so we went to him. Ds had the surgery on Thursday, July 10, and then had the drain removed on Wednesday two weeks later. On Thursday night the area was very swollen and I was concerned that his incision (about 4 inches) would open up due to the pressure. Dr. said this might happen and that he would need to have the fluid aspirated if it did. I called the surgeon on Friday morning and he was in surgery and did not get back to me. Wound up meeting the on call surgeon Saturday morning, but the incision had already opened up somewhat. He was put on an antibiotic and saw his surgeon on Monday. He said to just let it drain and keep an eye on it. Three weeks later and it is still open and draining. It does not seem to be infected, though. I am still hopeful that he will heal completely and that the cyst/sinuses will not come back. Quote Link to comment Share on other sites More sharing options...
MBM Posted August 8, 2014 Share Posted August 8, 2014 Wow! That is a bad infection. If you are open to treatments that could assist in healing that wound and reducing the pain, PM me and I will PM you back with some information. I don't want to be too presumptuous. Your poor son! Quote Link to comment Share on other sites More sharing options...
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