MRI & CT SCANS

Sawyer's MRI has come back NORMAL!! YAY!! He's definitely not out of the woods for typical laryngomalacia, tracheomalacia, and bronchomalacia complications BUT he does not have any related neurological problems and we are very thankful for that! <3

Declan's CT Scan was a less exciting revelation. The Dr. believes that Declan has something called atypical TB. This is something that can form if you have a compromised immune system (which he does) and TB germs infest a certain part of your body. It is not contagious and the cure is immediate surgery (or it can spread to other organs) on the area affected, in this case it would be Declan's parotid gland. They don't know if it's in other organs already but he said that was rare... My first instinct is I'm freaking out! I don't dislike our ENT doctor as a person, I just believe him to be a very busy man that sometimes rushes through things and perhaps he doesn't pay enough attention to all the details. For a situation like this surgery that cannot happen and I feel like it's a big risk using our same Dr. for this surgery, however, it is the opinion of relatives, this Dr., and our PCP that this is something that cannot wait too long on and going out of state for a second opinion is not really an option. My fear is the facial nerve that can be damaged in this situation and the fact that he is leaning toward the riskier surgery (possibly leaving cells behind causing regrowth and having a higher risk toward the facial nerve damage to occur). He believes this thing is sitting on top of the gland. He also noted that it could be a cyst or granuloma. We have had blood tests done and it is not an infection or cancer! Thank GOD! He has said he can change his mind once he gets in there and take out the whole gland, but I will re-address my concerns on surgery day and probably try to push for the least risky surgery...I don't want to remove the gland unless necessary but he tends to forget and just do whatever is on the paper instead of making decisions in the OR...at least he's never changed his mind before during a surgery. I don't feel comfortable with this situation...I feel rushed and trapped but there is nothing I can really do...my husband, family, and Dr's are pushing me to do this...I want him better...just so scared for him...so much is at risk...just very stressed...

Declan's Tumor (Benign or Cancerous?)

Well...I've been sitting on this for almost two weeks...but I think it's pretty firm that we're dealing with a serious issue with Declan (my first LM baby). On Friday, Sept 2nd I noticed a "bump/growth" on his face from his jaw to the middle part of his ear on his face. It's a little larger than a quarter in width and sticks out a little but if you didn't know to look you might not see it...however if you see it then you're freaked. I called immediately after seeing it but it was around lunch time and it was the friday before Labor Day weekend. I wanted to know if I needed to go to the ER & the ENT nurse said it was non-emergent and we should wait until Tues. morning. The doctor looks at him on Tuesday and says there is a 90% chance it's a benign "mass" that is as large as his entire parotid/paratid (sp?) gland he also tells me I have the worst of luck with some of the rarest things a child can have. He then decides he's going to give him 7.5 ml of bactrim for the next 10 days to see if it's by some reason an infection and not a tumor and then we were to come back on the 27th if it's not gone and they will do scans. So we've gone a full 7 days of antibotics and no change in the gland it's huge. I read that fast growing "masses" are most likely cancerous! So I've been totally freaking out. Scrambling trying to get a second opinion and nothing is working out. We're trapped here in Arkansas unless we want to lose our house to get another opinion because Tricare won't cover anything out of state?? RUDE! Even if it's not cancerous I don't understand waiting so long to find out what it is. I get trying antibotics for 10 days but why wait until the 27th? I think that's too long. Another thing that freaks me out is he has growth problems and 90% of the cancerous tumors in this gland stem from the thyroid gland...what if he's had this his whole life?? I'm just worried about him. I want answers and I have to at least finish out the antibotics before they will see us. If it's benign he's still not out of the clear because his facial nerves run directly through the gland and it's a very risky surgery...I don't trust our current Dr. but I'm trapt with my other Laryngomalacia baby that needs the RSV shot here in Arkansas, I feel torn between the two. I dont' know how much more of this kind of stuff I can take. I can't lose him. And the stupid/mean people that have been talking to me today during this situation I just wish they could understand what it's like for me on a daily basis because maybe they wouldn't be so mean about me calling worried about my sick baby. I'm just praying he's going to be fine. There is more to this story but I'm just too tired to even write it all out...