100 lb. Club - Tammy,How Is Your Son?




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PamPSM644
12-10-2004, 02:02 PM
I've been thinking about you and your boy and whats ahead for the both of you.He sounds like a great kid and very brave. When it comes to our kids we sure aren't brave ,right?When my son was released from the hospital he came home to recover.Everytime he winced with pain or struggled to get to the bathroom was like a knife in my heart.I'd run in his room to offer help at the slightest sound. Please give us a progress report on how your both doing when you get the chance.Love and hugs,Pam


Tammy32
12-10-2004, 05:49 PM
Alex is doing so much better today. I'm not sure if everybody knew but my husband is active duty Navy. My son was taken to the Naval hospital when the accident happened. That was one nightmare after another. They let a med. student try to set his foot into place the first time. They botched that. Second time a doc did it. He got it wrong. Third time an orthopedic doc did it. Now, after all that, it is still not right!! They want him back in there to do it again. We were talking to the doc on the phone and he got irritated at my husband and I for asking questions and told us that he did not have time to stand around and talk to us and he hung up the phone on us!! That was it. I'm not going to let any doctor work on my son's foot who can not even take the time to answer my questions. I am so freaking mad right now it is not funny. So, we have decided to have him see a civilian doctor. He has a very bad break and one that could possibly give him a limp for the rest of his life if it is not treated properly. They gave us **** over trying to find a pain medication for him. One doctor said he could try demerol if the other meds did not help so when we called today to try to get them to do that a different doctor told us that he was in no way going to give him demerol. I guarantee if it was his kid it would not be an issue. I only want the best for my son, and I won't settle for some military doctor who does not give a crap treat my son. I don't want to diss military medical care, but I have never seen such a sorry group of doctors than I have here at the San Diego Naval hospital. We should be getting an appointment quickly for a doctor out in town. I will be curious to know what they have to say.

Alex is asking to try to take a wheelchair ride tomorrow. He so needs to get out some. He's a teenager and we all know that they don't like to be in one spot for to long. He is getting jittery having to lay around all the time. I consider that a good sign though. I know his pain is not as bad as it was. He's one tough kid. Personally, I don't think I could have done half as well as he has. He's very relieved to know that he will not be seeing anymore military doctors.

Thanks for the concern Pam :)

glynne
12-10-2004, 06:12 PM
Glad to hear that Alex is better today. Hope you can find a nice dr for him ~ they do exist. I am a nurse ~ some dr's are nice some are jerks. Keep looking until you find a nice one.


barbygirl43
12-10-2004, 06:20 PM
Glad to hear he is doing better. My friends have had some horrible experiences with military docs as well so I know where you're coming from. Military or not, they should still treat you with respect and answer questions.

chipper15173
12-10-2004, 07:09 PM
I am glad to hear he wants out and about. That is a real good sign. We are retired military. My DD had hurt her wrist and they said it was sprained, don't worry. Well, 6 months later, after many appts. They sent us to the outside world. It had been broken. By, this time it had healed. She now has problems with that wrist. In the ER once she was told she had appendicitis, but to go home and sleep with me and if she broke out in extreme pain, bring her back because then it burst. Excuse me!! She was around 6 at that time So, I know what you are talking about. Good luck and be strong.

PamPSM644
12-10-2004, 08:27 PM
Tammy, Glad to hear your son's spirit is so strong. I am furious at them with you.Outragous! Our military and their families should be given the best care thats possible to give.Glad to hear your not the "lay down and take it" kind of gal.I live by San Bernardino if you need some complaint letters written or e-mails sent to certin people I'd be happy to help. You sure do have my heart in this trying time. Pam

jiffypop
12-10-2004, 10:18 PM
i'm APPALLED at this treatment!!!! how DARE they - and that san diego facility has some EXCELLENT physicians...

you go fight. but it's DISGRACEFUL that you can't get decent care for your son ... hmmmm do we feel a letter to the hospital director coming on here??? let me know, i'll put it together...

Sheila53
12-11-2004, 12:20 AM
Good for you for standing up to them! Your poor son--teenagers have so much energy and not to be able to get rid of it must be awful for him, plus, of course, the pain. He sounds like a real trooper, though.

missaprylj
12-11-2004, 02:07 AM
I can only imagine the pain and stress your son (and you and your family of course!) must be in right now. Bad things happen to good people all the time. Best wishes, and have a wonderful weekend. :)

Annie-Rose
12-11-2004, 04:09 AM
I'm so sorry to hear about Alex's accident. I'm praying for your family and that Alex will make a quick and complete recovery. He's a lucky boy to have such a caring mother.

djs06
12-11-2004, 01:07 PM
I can't believe the ignorance and arrogance of those doctors! Shame on them. Unbelievable. Why do people become doctors of they can't work with people? What a bunch of idiots.

Tammy, I'm so sorry to hear about this... I hope Alex gets much better soon, poor guy.

Charbar
12-11-2004, 01:26 PM
Tammy, I'm sorry to hear about the accident! I hope things get better for all of you real soon.

I would be so mad to hear about the treatment you all received. That is terrible. It's like they know you have no choice - if you could I'm sure you would have taken your business elsewhere.

Dana

Tammy32
12-11-2004, 01:44 PM
Thank you all for being here for me. Thank goodness each day is getting easier. I think I am getting over the shock of it now and it is not my every waking thought anymore. I've had raging pms the past couple of days and have used it as an excuse to eat what I want. Normally, under stress, I don't eat. So, I know that PMS is making this difficult. I'm going to give it my best today today to curb some of the PMS cravings. They are just awful. I'll keep you all updated on what the civilian doctor says once we go see him. We don't have a appointment yet, but I suspect that we will be seeing the doctor sometime in the coming week. *Hugs* you all are the best!!

lessofsarahtolove
12-11-2004, 01:51 PM
Tammy, this is unbelievable. I applaud your decision to get the best treatment for your son (poor guy) and find it reprehensible that you've been forced into this position by their arrogance and inhumanity. My heart is with you and your family, and I have every faith it will work out for you. :grouphug: And your son sounds like just a great guy -- you must be so proud of him. :)

Tammy32
12-19-2004, 01:32 AM
Just an update. Tricare authorized us to go to Children's Hospital to get Alex's care. I think it was a very wise decision on our part. He had a doctor's appointment there this past Friday. They opened the splint and and took some new X-rays. Then they made my head spin. They said he was not going to go home and that he was going to have surgery right away. The biggest problem is that the break is right on the growth plate. They can not say yet if the growth plate is damage beyond repair. If Alex grows anymore and the growth plate is damaged they will have to open up the other leg and shave down his bone there so he won't have a limp. I know that sounds awful, but I am grateful that there are options if his growth plate was damaged beyond repair. By looking at his growth plate they don't think he will be doing much more growing. He is already around 6 foot, so it looks like he won't be getting much taller than that. But, he also made sure to let us know that they are not always right and that if he does grow alot more then they will have to do something about the limp.

At 12:00 p.m. Friday he had his surgery. They had to screw his bones back into place. The surgeon was wonderful, the nurses were wonderful, and the rest of the staff was just awesome. He was so worried he was going to wake up in the middle of his surgery, and they did so well at calming him down. He was extremely nervous. The doctor put alot of numbing drugs in the foot so that when he woke up the pain would not be as intense. I thought that was great. They give them something for nausea before they wake them after surgery also. So, he woke up with no problems. He was just sleepy for the next few hours. I sat with him while he slept off the drugs. He had very little pain. That made this so much easier for me. It is just extremely hard to see your children in pain and not be able to help them, which was the case with the initial time of when the car hit him and he was taken to the military hospital. If I have a choice I won't be taking him back to the military hospital for anything.

Now, another problem was found while he was in surgery. My son has very, very high arches and they have gotten worse over the years. Also, this has started pulling his toes upwards in positions they are not supposed to be in. To repair that he will have to have more surgery to cut the tendons that are causing the problem. The tendons get to tight and start to pull everything up. I had one military pediatrician tell me it was freaking normal a few months ago!! It is not normal! It could also be associated with a very serious neurilogical problem. Pardon my spelling, I am hot under the collar. So, once he is healed from this injury I am sure they will press on with the next foot issue. I am hoping and praying the insurance will let us stay with this doctor. I am going to insist on it!! I won't have my son jacked around by people who don't give a crap. I don't know much about this condition yet as the doctor said we would discuss it more in the office for Alex's check-up this coming week. I'm a bit worried about it, but I can't let the stress of everything that is going on get me down any further than I already am, so I have given in to the fact that what shall be, will be, and I will deal with it as it comes.

lessofsarahtolove
12-19-2004, 02:21 AM
Oh, Tammy, it really sounds like your son and your family are just really going through the ringer. :( I'm so sorry. Thank GOD you had the presence of mind to assume leadership of his treatment and advocate for better care. My hat is off to you. This story is just unbelievable to me, and it really gives us all a lesson to be active participants in our own healing and the healing of our loved ones. You can't just blindly swallow what's being fed to you, and trust that your medical "helpers" are qualified, equipped, and/or motivated to actually help you.

You're a wonderful mom, Tammy, and I feel sure that, now that you've got some good doctors looking out for him, your son will heal quite nicely and they'll help you tackle the next challenge. It's so crazy that you have to go through this, but this update sounds really, really positive. I'm really happy for you guys. :grouphug:

Tammy, I just think the world of you, I really do. :)

PamPSM644
12-19-2004, 12:08 PM
Tammy,wow,your boy sure has had it ruff. When I read about the high arches I became a little concerned.You see one of the most prominent symtoms of my muscular distrophy is very high arches. The name is "Charcot Maria Tooth Syndrom" and it is also neurological.My father was a OBGYN but unfamilar with this as was the ortho doc he sent me to when he was concerned as to why I walked funny. It took a neurologist to figure it out.I hope your son is spared this as he has enough to deal with. My son said to tell you to not let him scimp on his physical therapy when it's time as he did.He still has one leg thats weaker then the other. :o :)

Sheila53
12-19-2004, 11:30 PM
I'm so glad that you were assertive and were able to demand the best for your son. It's scary to think that the military docs said your son's feet were "normal." I'm praying that everything will be okay for him.

After reading your story, I told my daughter (who is in the Navy) that she needs to wait until she's out of the Navy to have a baby. I don't think I want my grandchild being born in a Navy hospital.

Tammy32
12-20-2004, 01:43 AM
Pam, that is the same thing that another doc mentioned to me before. Go figure that they did not mention that it was a symptom of muscular distrophy. They did mention that it could affect his hands also. They made it seem like it was no big deal. I hate military doctors. I'm really losing faith in them completely. I've not yet researched that yet. I think I am afraid. Actually, I know I am afraid. I will know more once I get to see the neurologist with him. Whatever it turns out to be we will face it head on and do the best we can. He's a very strong boy both physically and emotionally. I hope that I have instilled into him that when you fight and work hard to beat something you can. Three years ago he saw me turn into a person he did not know. I could barely remember anything. I could barely remember his name let alone what day of the week it was. I was very, very sick. I thought I was dying and soon learned I could die if it continued on. To make a long story short my liver was poisoning my whole body including my brain. To this day there was never a difinitive diagnosis to what was causing it. All I know is that I moved from where I was and the person I was with and it started going away. It took me over a year to recover. I still have terrible short term memory and have lost some of my long term memory. Alex helped me through that and I fought like a big dog to recover from that. I hope he can take that and see that although life throws you some really bad things to deal with you can get through them. The doc he is seeing now is straight up. I have faith that he will be forthcoming with me. I just want some straight answers. I hate the beating around the bush. I'm not going to fall out or faint if they tell me something bad. I want to be informed and even then I will research it further. Pam is that what you ended up having? You could be a really good source of info for me. Thanks Pam, you are the best.

Hey Sheila. My one year old was born in the hospital here and I had excellent care but that was luck. I just happened to get a good doc the night she was born. As for the prenatal care. It sucked!! If I was not so informed they would have done things to me that endangered the life of my baby. I actually had to tell them a couple of times that no, you are not doing that to me. They did not like that to much. For the most part I have lost almost all faith in the military medical care where I am at right now. I guess that is not to say that it is that way everywhere, but I sure would be leary now anywhere I go. I refuse to be their research animal anymore. I am human and have thoughts and feelings and they need to freaking realize that. Sheila, from what I understand with tricare you can go to a civilian doctor with ease. I am checking it out further. I will let you know. I want my one year old to go to a pediatrician in town as I don't trust them anymore to look out for our well being.

Heya Sarah, I guess I've never been one to go with the flow and not question..hehe..It has gotten me in some trouble sometimes to. I can't but help question many, many things about life and the world in general. I advise anyone here that if their gut is telling them something does not feel right with what they are told it probably is worth questioning further. I've learned that I don't give a flip what those people think of me. What is important is that my son gets the best care possible. You always say such nice things Sarah, it makes me feel all warm inside. :)

PamPSM644
12-20-2004, 11:26 AM
Yes Tammy,I have "Charcot Maria Tooth Syndrom". Only someone who is a quack would tell you it's nothing to be concerned with. If you want to talk I am sending my phone number to you though your "private messages" here.When you are ready to find out about it and discuss it with someone call me.Yes his life will change but it certinly isn't over and you found out about it early which is good.The "Universe" must of brought us together because when I think about all the coincidences that have brought us to this point it's amazing.Your son is the first person I've known of with this disease besides myself. I was lead to believe it's fairly rare.Let me reasure you by saying I have led a full ,rich life and this disease ,in the sceam of things, has not prevented me from doing what was most important. Love Pam (PS ,How wierd is this,I was born 9/14 and I just saw that you are 9/10.) PSS- Tammy,I just remembered there are certin meds he needs to stay away from because they've proven detramental to those with this syndrom and you need to know what they are.

Tammy32
12-20-2004, 02:58 PM
I got your pm Pam. Last night I decided to educate myself on it and did some research online. It really looks like that is what he has. It would explain many many things, one being his overly excessive "clumsiness". That has been going on for years and I just though that he was just not coordinated. Then about two years ago when he started to go through puberty his pinky toe started curling up to the top of his foot! I thought, "wow, he broke his toe or something". Well, I think I now have a better understanding of what might be going on. I can now go into the doctors office prepared if that is what they ultimately tell me it is. From everything I read it is hereditary, but I have yet to figure out who else has had it. But, also, they say that each case varies and sometimes a mild case goes undiagnosed. I've always had high arches and problems with finding shoes that did not hurt my feet, also, over the past few years I have noticed a continuing weakness in my hands. Doctors contribute this to the psoriasis that I have. I see now that maybe that may not be the case, and I might be the carrier also. There are so pretty scarey statistics I read. If Alex does have that he has a 50% chance of passing it to his children. These are things we will just have to deal with as they come. I am not going to freak out. We will just deal with it as it comes. I plan on getting myself into the doctor asap. At least I can get this ball rolling. So, we shall see how this is going to go. The best I can do is get the process going and find out for sure what is going on.

I'm almost certain that you and I being on the same board is no coincidence. I believe all things happen for a reason and this being one of those times. I'll know more on Thursday or Friday when I take Alex back for his post-op check-up for his foot. I am almost sure that the doc is going to refer us to a neurologist which is good. I want to continue to go through the Children's hospital. I trust them so far.

PamPSM644
12-20-2004, 03:36 PM
Tammy,they will want to do a EMG. It sounds like you may also have this.You will want to get leg braces. They have been wonderful for me. I feel so bad for your son. People used to tell me I was lazy or clumsey because I couldn't keep up with them.Finding shoes has been ****. I can only ware flat shoes and most everything has some kind of heels.

barbygirl43
12-20-2004, 03:46 PM
Tammy--I'm glad to hear your son got the surgery he needed and is on the way to recovery. Keep us informed about everything else.

mezmerize
12-20-2004, 04:01 PM
Tammy, I'm happy to hear you've found a caring doctor and your son is on his way to the right treatments.