Sophia3 Posted November 11, 2009 Report Share Posted November 11, 2009 AngelaI don't even know what to say at this point...you must feel helpless...and mad at the "top hospital"...sigh((((((Hugs))))))) Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 11, 2009 Report Share Posted November 11, 2009 (((((Angela)))))Still sending prayers.....Julie Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 16, 2009 Author Report Share Posted November 16, 2009 Saw the surgeon today. He basically shook his head and said he didn't know what was going on with Christopher. He urged us to get the nerve block, which is tentatively scheduled for this Friday morning. He said it would be a good diagnostic test for him (the surgeon) as he would then know if it is truly nerve pain or not. He said neuropathy or scar tissue are NOT common in children, you see that more in adults. So if it is that, it is pretty rare. But look at the family he's dealing with...So for right now he's still in pain, still trying to get through with meds that aren't working. The pain management team started him on Neurontin, but he had an atypical reaction to it, so now he's on something else in the same class, and he is having the normal side-effects now.Hopefully the nerve block will bring him some much needed relief.Thanks,Angela Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 17, 2009 Report Share Posted November 17, 2009 . . . man, oh, man. . . I don't even know what to say..how FRUSTRATING for you...I hope the nerve block helps and the doctor gets some answers...poor kid. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 21, 2009 Author Report Share Posted November 21, 2009 We got the nerve block yesterday. Other than pain at the injection site, he seems to be doing better! Today he got up and went to a competition with his combo in Indiana. I could cry I am so happy that he felt well enough to go and play his trumpet! Let's see how he feels tonight. I hope hope hope this works! He was getting so down about being in so much pain all the time.Thanks everyone,Angela Quote Link to comment Share on other sites More sharing options...
erik Posted November 21, 2009 Report Share Posted November 21, 2009 That is terrific that something has brought him some relief! Gotta figure he will be pretty worn out but hopefully in a good way. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 21, 2009 Report Share Posted November 21, 2009 YAY!!!!!!!!!!!!!!! glad he is doing better. Quote Link to comment Share on other sites More sharing options...
Tammy Posted November 23, 2009 Report Share Posted November 23, 2009 I'm sorry I'm just reading this now. It is interesting to see that we were having almost the identical experience with our 4 year old daughter the last week of July. She had been admitted on August 7th. She also had to have surgery and a chest tube for draining, etc. Does you son still have coughing spells at time that are 'productive'? Since the timing as your son was almost exactly as our daughter's, I'm wondering if this is what the type of virus going around this year seems to be causing... the high fever with pneumonia, etc. She had chest pain and a very hard time breathing also. The doctors at the Children's Hospital had her on Zyvox and Zosyn. The reason they used both these drugs was because they are seeing a lot of resistant forms of pneumonias. What type of antibiotics did you son have? The surgeon who did her VATS procedure, stated that it could take 3-6 months to attain up to 90% recovery, and 1 year for a complete recovery. They also said that a reoccurance is possible in 50% of cases, so I now I tend to worry every time she's catches a cold. How is he doing when he catchs a regular cold? Has he gotten through them okay? Sorry, I'm just surprised to see someone else having experienced this nightmare, so I tend to ask lots of questions - Tammy Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 24, 2009 Author Report Share Posted November 24, 2009 Hi Tammy,I am so sorry you are experiencing this nightmare. You guys must have come in right after we got out of Children's. Were you at Cincinnati Children's? No, our son does not seem to have productive coughing spells. He has a small dry cough every once in a while.They suspect our son had H1N1 then got a post-viral pneumonia that became complicated.He was on Vancomycin (sp?) in the hospital, and came home on something different, but can't remember what it was. Our surgeon told us the same thing about 3 mos and a year recovery. My kids are all 3 followed very closely by pulmonary medicine at Children's.He thankfully hasn't gotten any colds or coughs since the flu/hospital nightmare. Just the lingering pain lately. They did not tell us that there was a 50% reoccurrence risk... That is a scary statistic.How is your daughter doing now?Angela Quote Link to comment Share on other sites More sharing options...
Tammy Posted November 25, 2009 Report Share Posted November 25, 2009 Hi Angela,We were at Children's in Minneapolis, MN. Glad to hear that they gave your son Vancomyicin. I'm familiar with that drug because our daughter was given it for an infection when she was 16 months old when she was hospitalized. I just was hoping they had givenyour son a drug that covers resistance and for the most part, Vanco does. Take care,Tammy Quote Link to comment Share on other sites More sharing options...
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