Picked my kids up from my sisters house last night. It was her "Ava" weekend LOL as it was called before the boys came along, Jacob seemed fine when I brought him inside. I sat him up in his feeder chair and our family ate dinner and watched TV or about an hour. At bedtime I went to give him his night time meds and I noticed he felt pretty warm and he was breathing really fast. I gave him his meds and then gave him a 2nd breathing treatment. His breathing did not slow and after Tylenol he was still running a temperature of 101.2 30 minutes after all meds were given. So, I called the on call pediatrician. He advised I have him seen if he was breathing faster than 45 breaths per minute...well he was at like 60! AFTER ALL THE BREATHING TREATMENTS! So I took him to the ER she told me he had a nasty ear infection in his left ear. At this point he dad slowed his breathing between 40-50. I figured he was having an asthma attack....they did a chest x-ray and to my surprise he was diagnosed with his pneumonia...it has been a while. The x-ray showed the normal damage that he has had for over a year in his right upper lobe, but this time he had infiltrates in his right lower lobe as well. So, not really sure if it is aspiration or not, but more than likely it is. He made it 3 days without vomiting, vomited 2x on Sunday before I got him.
Which leads me to the other other doctors...not sure if I have blogged about it before, but is so I am writing it again anyway. We seen the ENT doctor last Wednesday. We discussed the chronic congestion and enlarged tonsils. Of course he thinks it is a GI issue relating all his issues back reflux....he told me he will take the tonsils and adenoids out if I want him to, but it is just putting a "band aid" on the real issues. He told me to talk with GI again and follow up in 4 weeks. UGH so another month with another doctor that don't really think he can help my son! So, I call GI and get a returned call on Friday. Once again they tell me they recommend a j-tube. This is a tube that goes into the 1st part of the small intestine....he would then have 1 hole in his stomach with 2 tubes coming from it..the g-tube to give medication and the j-tube to feed him. With j-tube feeds he would have to be on continuous feed 24/7...never a day or hour without him being attached to a pump. WHO THE HELL WOULD WANT THAT FOR THEIR CHILD NO MATTER HOW DISABLED THEY ARE!?! Especially when their are other options. I understand their are other complications and risks associated with the nissen. I understand it can't be reversed etc, but I feel like this is the better option. I feel like it will better protect his lung and he can get a mickey button and not have a long tube hanging from his stomach all the time. So, now we decide A. Do we take out tonsils and adenoids and see if that helps with the congestion and cough? This would be a gamble to see if it will make him vomit less... or B. Do I go ahead and push for the referral to the Pediatric surgeon to have the nissen do and the risk A. major complications B. It not works C. his still being congested and coughing all the time. or maybe C. we will do tonsils 1st and if that does not work then do the nissen. I dunno anymore!