One year since H1N1 but always waiting.

It has been one year since Brandon was released from Dell Children's Hospital from his H1N1 illness.  This weekend we celebrated his one year anniversary with other parents and kids also in ICU during this time at Dell Children's.  I am not sure if Brandon remember much while he was there since he was sleeping most of the time, but Brandon really wanted to go.  They had lots of games and the ACC Jazz Band which was really good.  Brandon loved the band and seemed very happy to be back with everyone.  It is hard to believe it has been a year, but I am glad we have not been back.  For me it was a unpleasant reminder of 10 long days of "camping" in ICU.  It also was a reminder of all the great and dedicated staff that was not going to give up on Brandon.   Many of them were at the event. 

For 17 years there has been many times that we are waiting on the result of some test, waiting to confirm or not confirm a new diagnosis and waiting to go forward with the next test.  As Brandon has gotten older I was hoping this would become less.  Really the waiting is the worst part.  When we started going to Scottish Rite the doctors there were convinced that Brandon had one of several conditions they wanted to go forward with testing.  One was a tumor in the brain, one was a neuromuscular condition, one was a genetic condition.  All of those required months of testing and results.  Even when he was in Dell for H1N1 they wanted to test for kidney failure, internal injuries and infection under his leg cast.  There has been a great deal of waiting over the years.  I have to admit Brandon is great at waiting and I am not good at waiting.  It is really me that spends way too much time thinking about the what if's, looking up what I need to know to ask the right questions with the doctors and worrying about the results.  Many times it turns out to be nothing and sometimes it turns out to be something.  If it is something, I go through the same processes every time with a grieving period, a little sadness and depression, a research mode, coming to terms and learning to be okay with the diagnosis.  Years ago I tired to learn not to dwell on the waiting because really I have no control.  It is better to let go of all the stress and wait until you get the call. If it is nothing you spare yourself all the what if's.  I have gotten a little better on the wait, but I have not been able to not think about it at all. 

Brandon has had a series of little illnesses for the last few months.  The latest being what I thought was a cold.  However, Brandon appeared to be breathing faster than usual and breathing harder.  That sometimes indicates the illness is turning into pneumonia.  I have been all over pneumonia for 17 years and I try to get very aggressive on treatment before it gets bad.  I took Brandon to his PCP last Monday.  She took an x-ray and read it but did not see anything.  We left thinking so far so good.  The next day Brandon's PCP called and said that the radiologist compared the last x-ray shortly after H1N1 and this x-ray and found a nodule on his x-ray.  She said it probably was not cancerous but wanted to call Brandon's specialist to discuss.  That is never a great way to start a conversation and began another waiting game for me.  I looked up lung nodule on the information highway.  A good site. http://www.emedicinehealth.com/solitary_pulmonary_nodule/article_em.htm
Probably the nodule is nothing, but I know that this will be a process of checking the nodule over a period of time to determine what it is.  It probably is not cancerous, but it needs to be checked.  It still is hard not to worry.  Just part of being a mom, but the part I wish I could skip.  Next appointment this Friday. 
Trying not to be a worried mom.
Leah