Steph06 Posted October 25, 2009 Report Share Posted October 25, 2009 I am so sorry to hear about your son. I will keep you and your son in my prayers. Please believe God is by your side and will give you and your son the strength to get through this difficult time.Steph06 Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted October 27, 2009 Author Report Share Posted October 27, 2009 Now I am getting pretty concerned. My oldest, Christopher, is not getting better. He is walking around holding his chest. I have called his pulmonary specialist. Her nurse said she'd have her call me later today, that she is out of the office right now. He is complaining of being very tired, dizzy, his whole body hurts and the chest pain. No fevers I am trying not to go into freako panic mom mode, but it is hard.He called me from school saying he was sick, please come get him. He felt too badly to drive himself home. This is the kid who LOVES to drive. On top of all that, my stepsister is in the ICU with a suspected bacterial pneumonia. She is coughing up blood. I feel badly for her, and it makes me worry that much more.Feeling pretty puny,Angela Quote Link to comment Share on other sites More sharing options...
erik Posted October 27, 2009 Report Share Posted October 27, 2009 I'm sorry to hear that. Is this the pleurisy lingering/returning? Do they do a steroid for inflammation or something like that? or just supportive care?Oh boy. Coughing blood is not fun... I guess that goes without saying but I can relate... one feels very vulnerable. I am sure the ICU can nurse her through it... she is in good hands.It sounds like you are doing very well managing all this... I'm sure it feels terrible, and helpless, but you are doing so much to help and care for everyone. I hope you manage to get some rest in as well. Probably feels impossible to do, but give yourself some rest and support time as best you can, too. Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 28, 2009 Report Share Posted October 28, 2009 How are things today? Update when you can. I know so many of us on the forum are thinking of you and praying for you.DON"T forget to take care of yourself so you can be strong for your family.sorry your dealing with this now!!! with love- kari Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted October 28, 2009 Author Report Share Posted October 28, 2009 No steroids, they don't want to tank his immune system. They put him on Aleve every 8 hours around the clock. It isn't working. I took him to the primary care doc this morning out of desperation, because I STILL haven't heard from the specialists office. It is odd, because she is usually so good about getting back to us. She must be really busy.Anyway, PCP doesn't know what is going on, they ordered a CBC. Maybe that will tell us something.Grrr I hate waiting. Patience is not one of my virtues, especially when it comes to care of my children.Angela Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 28, 2009 Report Share Posted October 28, 2009 Thinking of you and your son. Hope he feels better very soon. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 28, 2009 Report Share Posted October 28, 2009 AngelaI am so like you when WAITING for answers to things...especially for other loved ones. xoxo Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 28, 2009 Report Share Posted October 28, 2009 SENDING BLESSINGS your way for everyone to get well and stay well!xxx'sbellamia~ Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted October 29, 2009 Author Report Share Posted October 29, 2009 The CBC was not terribly exciting. One value was slightly high and the other slightly low, but not enough to make the doctor terribly concerned.We are getting a CT scan probably tomorrow. I talked directly to his pulmonary specialist. She is concerned that his lung might be having problems (i.e. an infection), and an x-ray isn't going to show anything right now with all the scarring from the pneumonia still in the way.So now I'm trying to convince myself it is pointless to worry until we have the test done and the results back.Thanks for all the good wishes and support!Angela Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted October 30, 2009 Author Report Share Posted October 30, 2009 Aaaaaarrrrrrgh! Frustration!!!My son had his CT today. I've been waiting all day for the doctor to call. She didn't. We went to our middle son's band concert tonight, and while I was in the school (with no reception on my phone) she called and left a voicemail that she was trying to get in touch with me about my son! Now I have to wait until the morning to call and get the scoop. >What she did say on the voicemail was:She's calling to discuss the results of the CT.She has a plan.Call in the morning if she doesn't get hold of me tonight.She is ordering some bloodwork on my son.I have no idea what that means really. Did the CT show something or not??? I guess if it did, it wasn't too bad because she didn't say bring him to the hospital.A lousy 30 minutes at a band concert, and that is when she calls...Sorry, had to vent.Angela Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 30, 2009 Report Share Posted October 30, 2009 *&^%$#^! Sorry you missed the call, girl. :-( I will be anxious to hear your update.Did you get a prescription for xanax for yourself with all that's going on?Just kidding, sort of....but all this waiting can wear you out...as you know. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 2, 2009 Author Report Share Posted November 2, 2009 Okay,His liver function bloodwork was very slightly elevated, but nothing they are concerned about since he's been on anti-inflammatory medicine for a bit. His Epstein-Barr came back with titres (sp?) but no active infection now.So... He is being re-admitted to the hospital sometime this week for further testing and evaluation. Poor kid. The sad thing is he doesn't even object to it. Before, he said he'd rather die than go back, and now he is saying to please admit him. Angela Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 3, 2009 Report Share Posted November 3, 2009 Oh Dear,That must mean he's still feeling bad- it's been a long time. Poor baby. That Epstein-Barr has been associated with CFS- but this is your son typically WITHOUT symptoms. My 16 y/o developed pneumonia shortly after your son, but healed after a few rounds of anti-B's. Your sweet boy's been dealing with this for too long. An admission must almost feel like a relief to you so they can get to the bottom of things. I've been checking for your update- please post as you can.I'm sending good energy, prayers, love, and hugs your way-Julie Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 3, 2009 Report Share Posted November 3, 2009 Angela,I am continuing to think of you and your family, and am keeping all of you in my prayers. This has to end eventually, and let's hope it's much sooner than later. This has been going on way too long! Take time to take care of yourself, too, and allow others to help you when you need it.Jana Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 3, 2009 Report Share Posted November 3, 2009 I'm with Jana- still thinking of you. Please update when you can. I hope you are holding up ok yourself. Hang in there mom! - kari Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 4, 2009 Author Report Share Posted November 4, 2009 Well, we are here. At Children's. I got to talk to a pulm doc tonight, and am curious. My son's CT scan was good, but his chest x rays are not. I always thought that the CT was superior to an x ray, so I'm not sure why the CT wouldn't show what the x ray is seeing... The x ray was done less than 24 hours before the CT, so I know there was no resolution of the problem.So we wait. I hope we aren't here long. Hopefully tomorrow will bring some answers.Angela Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 5, 2009 Report Share Posted November 5, 2009 Any news???Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 5, 2009 Author Report Share Posted November 5, 2009 No one seems to know. They sent him home tonight, and we have to see a "pain" doctor in clinic tomorrow. I am very frustrated. I want to find out what the problem is, not just medicate my teenaged son. There is talk of scar tissue in his pleural cavity, but no one has given us options on how to address the problem. I was told the surgeon that did his surgery would call me, but no call tonight. I am going to go to this appointment loaded for bear. I am a wildcat mama, unhappy with being shoved off on a pain doctor who diagnosed my son without ever seeing him or laying a hand on him.I am so frustrated and unhappy. >Angela Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 5, 2009 Report Share Posted November 5, 2009 WOW I never think to check this CHIT CHAT board (REALLY wish it was blended with the main one) I had no idea you had gone back to the hospital. I am with you I would want ANSWERS not just seeing a pain specialist.Hugs and prayers to you Angela ! Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 6, 2009 Report Share Posted November 6, 2009 I totally agree. Ridiculous to just treat pain without first understanding WHAT is causing the pain & what his treatment options are. You are missing vital information. Of course you are "loaded for bear." Anybody would be. Demand to speak to whomever has floated this latest theory. Demand to see his films proving the problem. Has he had an MRI? Seems like that will give the best picture. Before a treatment is decided, seems like they'd want the best idea of what they are dealing with. Just passing him on to a pain specialist is a cop-out. Keep the appt., but be sure to let the doc know you need more info before acting on his/her recommendations. Your son is only 16 y/o. He needs you. Keep on fighting, Angela! I'm sending good thoughts you way tomorrow. Keep us posted.Julie Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 6, 2009 Report Share Posted November 6, 2009 Just want you to know I am praying for you and your family. Sorry that this is what you have to deal with but your son is blessed to have a MAMA BEAR!- sending this with love kari Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 6, 2009 Author Report Share Posted November 6, 2009 Pulm doc (at first) said he had scar tissue in his pleura, then he had an epiphany or something, and the shoved us off to the pain doctor, who says he has neuropathy. Before the pain team appt today, I called our pulm nurse and raised 3 kinds of cain. It didn't accomplish anything, and I ended up crying again. I sure wish our regular pulm doc would get back. She returns from vacation on Mon. The interesting thing I found out was the surgeon DID contact the attending pulm doc while we were in the hospital, and he told him that whatever is going on now isn't a common after-effect of the surgeries my son had. I am thinking pulm doc heard this, and hightailed it to the pain people to save face. So why did he lie to me? Why did he say he hadn't talked to the surgeon when he really had? And why did he promise to call me when he heard from them, knowing he was leaving the hospital from Thurs to Mon? So I don't know what to do, it is like a big circle, no one knows what the problem is. We have to go to the surgery clinic in two weeks. In the meantime, we are going to try the Neurontin.Angela Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 10, 2009 Report Share Posted November 10, 2009 Any more news? How's your fellow doing? Have they considered costochondritis? I know that sometimes follow severe infections and can be sooooo painful. Let us know the latest. Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 10, 2009 Author Report Share Posted November 10, 2009 I am in a bad place right now. No one knows what is wrong with him and no one wants to take responsibility for him. I don't know what to do. We supposedly have one of the top 5 children's hospitals, but you couldn't prove it to me right now.He had an atypical reaction to the Neurontin (imagine that...) and isn't sleeping, so I had to stop that med. Now waiting on the pain team to call back and let me know what the next latest and greatest idea is. The main pulm doc (that we like and trust) that was out of town is back, but she is busy in the ICU and we probably won't get her attention until later this week.It hurts my son to breathe and no one seems to care. Isn't this wrong???Angela Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 11, 2009 Report Share Posted November 11, 2009 Still praying! Just said another one for healing for him and strength for you!(((((((((((Angela)))))))))))))))) Quote Link to comment Share on other sites More sharing options...
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