MANY changes/trials and etc

crittermom

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for many of you,you know that my youngest son-Seth had Pnemonia back in 2007.He was 6 at the time,and was hospitalized over it.It would not go away,and he actually had lung surgury.His pnemonia turned into Plueral Effusion and he had Empiema (sp).After an hour and a half surgury,he was taken to PICU.He did recover,but we have had MANY issues that are NEVER absent.
He continues to get sick ALL the time.He gets bronchitis,upper resp infections and 2/3 weeks ago got Pnemonia again.It required him to be re-hospitalized for 24 hours.He was ALREADY on Omniceph.But, his body is sooooooo resistant to oral antibiotics,he required IV antibiotics.
The Ped came in and talked to my husband and I.They are aware of Seth's history with constant lung issues.We got to talking and something came up.She mentioned that Seth may have what is called Alpha-1 Antitrypsin Deficiency. That because he continues to have these lung issues, he needed to be tested for this.This is the first time, we were really aware or even knew about this.
After talking to Seth's primary Dr,and learning that SEVERAL in my hubbys side of the family have actually tested POSITIVE for this--we decided a test needed to be done on Seth.So, I took him in today for the test.It is a simple blood test....that requires a 5-7 business day wait on the results.
I'm not sure how many of you know about this illness, it is not something I had ever heard of.But, this is a pretty serious genetic defienctcy(sp).It will-- if he tests positive, will follow him for LIFE!! He will always have lung issues,and when about 50,will get emphesema(sp) --forgive my spelling--it's been a VERY long day for me.It will be in his records for life.And when he gets pnemonia/etc, he will REQUIRE IV antibiotics or HARD core Antibiotics to cure him.
This has devistated my family.My hubby and I are having alot of problems just dealing with the what ifs and etc.If Seth tests positive, he will have to undergo SEVERAL more tests.I have no clue what these entail,and no one will tell me right now.We just get told "wait and see if it comes out positive,and we will go from there".
Here is some info on Alpha 1
Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.
http://www.alpha-1foundation.org/alp...Alpha-1-Alphas
So, we are dealing with that...and add to that my health has declined ALOT.I am not sleeping well at all.And am having alot of Thyroid issues right now.I had a biopsy back in Dec.It was undetermined......too much blood and not enough cells in the specium.So, I am scheduled to go back in on Feb 16th at 7:30.They will NOT let anyone back with me.They do numb it locally.But, the nodule is so deep--they have to use a longer needle........and punctured my trachea.They have to get 3 sets of cells.So, I get stuck with the needle 3 times in the neck.I can not move/cough/swallow for the 30 min it takes them to do this.
I was placed on 48 hours of NO talking and 24 hours of complete bed rest last time.
I know I do not get on here as often as I would like....but I am asking that you all keep Seth in your thoughts/prayers and well wishes.If he tests positive, I do not know what life has in store for him.And our middle son(who is my current hubby and my child) will also have to be tested for this.
Sorry for the book!! Just thought I would update as I sit and stare at the puter,and read threads here.
thanks everyone and God bless!!
 

crazyforinfo

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You! You are one strong woman and you and your family WILL get through this!
 

pushylady

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I'm sorry to hear about Seth's continued bad health. I remember when he first had pnuemonia, and it really sounds likely that he's got that AAT deficiency, which would explain his bad lungs. Poor little guy!
You need to take care of yourself too! You must be very stressed out right now.
 

trouts mom

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Oh Tammy


I'm so sorry you are going through this..sending many healing vibes for you and the family.



Hang in there.
 
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crittermom

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you too M!! I don't know what I would do without you sometimes.
Thanks everyone.I'm staying stressed,and trying to cope with this.
 
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