>> Thursday, March 3, 2011
I'm not going to lie. I'm a mess. I'm still processing. I'm spending at least an hour a day on the phone with doctors. I'm trying to make sense of everything and I'm all over the place. So, I'm just going to start from the weekend.
Friday and Saturday Jackson had a runny nose, and a cough. He sneezed about a gazillion times. Nothing alarming, just once again, he came down with a little cold or allergies. By Saturday afternoon the coughing got bad. I had a big awards dinner and called my parents to cancel our night out. But, my mom is a nurse and sells half of the respiratory drugs Jackson takes, so we decided to let them babysit after all. We dropped Jackson off at 8, bathed and ready for his breathing treatment. When we came back to get him around midnight, he was all snuggled up in my parent's bed sound asleep. My mom said he didn't cough once, not once.
Oh how things changed when we got home. Jackson coughed and coughed and coughed. I sat up with him from about 1AM to 3AM. I gave him another breathing treatment and prayed the coughing to stop so he could rest.
And at 3AM I put him back in his crib and the next time we heard him was close to 11AM. As soon as he woke up, we gave him his morning meds and breathing treatment. Even though he slept late, the night was full of interruptions and he was exhausted. By 1PM, he was asking to go back to bed. I laid him down and the coughing fits started again. I gave him another breathing treatment, and he was able to sleep for about an hour and woke up coughing again.
That was it, off to the urgent care we went. Wouldn't you know, that boy did not cough once when we were there. Not once. The doctor thought I was crazy. However, they did do a chest x-ray to be sure the RSV and Pneumonia was all clear. She told us that see could see the scar tissue on his lungs, but the fluid was gone. We were sent home with a prescription for antibiotics and told Jackson has bad allergies.
I did not fill his prescription because in 12 months Jackson has taken 9 antibiotics. That is just too much for his little body.
Monday Jackson woke up 75% better. He slept great, barely coughed and his nose was hardly running. Monday night he coughed for about an hour on and off in his crib. Nothing in comparison to the weekend.
This brings me to Tuesday. We had our scheduled follow-up with Jackson's ENT (it had been a month since we were put on the list of drugs to clear up the RSV) and he was due for a hearing test from his tubes.
The doctor sat with us for a long time. I told her everything that had been going on and my concerns. She sucked out all of his nasal mucus and changed up his medication a little bit. She thinks if we completely dry up his nose, the cough will get better. Everything made sense. We have a maintenance plan list of medications and additional for when he flares up. She ordered a serum allergy test for today to be sure we are dealing with allergies and sent us on our way to the hearing test.
We met the audiologist and she put us in the sound booth. I held Jackson on my lap and she began playing with Jackson outside the booth. Then she started the beeps and training Jackson that if he looks at the box when it beeps, Goofy will appear and dance around. Jackson loved Goofy and every time he went away, he'd say "Oh uh" and would point for him to come back.
When the beeps were loud, Jackson turned his head in reaction to them. However, the softer they got, the less and less he'd look. Then he stopped completely looking in correlation with the sounds. He would just look because a little bit of time had passed and he knew that it was time for Goofy to appear. He's a smart one, my kid!
I'm sure I had hives up to my ears. Holding Jackson and knowing that my sweet baby was not hearing everything I was hearing broke my heart. I never want my son to fail at anything, and I just knew he was failing this test.
The audiologist never said that he failed. She said that they like to see kids his age around a 15 and he scored a 33. I asked her what was next and she said a ABR test. This test is done when they are sleeping (after you deprive them) and they take brain wave measurements for a definitive reading on what they actually hear. There's also a big difference between hearing and listening.
I left there not really knowing what to think when we got home. Mr. was at an LSU baseball game for the evening, so it was just me and Jackson. I put him to bed and buried myself in work. I didn't want to process, I just wanted to wish everything away and for Jackson to be well...Well at 9:44PM Jackson started coughing. The coughing soon turned into gagging and gasping for air. I couldn't give him another breathing treatment because it had only been 2 hours since his last one. So I held him and sang to him and cried for one hour. One hour I held Jackson and just begged for help. And at 10:44PM, he stopped coughing. I put him back to bed and that was it for the night.
I called the ENT on my way to work yesterday and asked for a nurse to call me back. I just needed to talk to someone. And at 12:15 my phone rang. It was our doctor, herself. She spent an hour on the phone with me talking me through everything.
First her main concern, Jackson failed the hearing test. Failed. We're not sure what he can hear or what things sound like to him. Failing this test coupled with the fact that Jackson doesn't talk yet is a point of concern. However, Jackson does dance to a beat. He knows the pattern of 2-way conversation. And he follows direction. I can tell him to throw something away or go get the red ball and he will. All of these things are good. We will be scheduling the ABR test asap.
Next we went on to talk about his list of medication and when and what to give him based on how he's doing. I feel like I finally have a good grasp on this. We'll be doing breathing treatments twice a day indefinitely.
Once Jackson turns 2, we'll do allergy testing. Today's serum test will give us an idea, and confirm that all of this is due to allergies. I'm nervous that there's something more going on and we just haven't found it yet. I need to listen to all the voices in my head, we will get to the bottom of this! I know Jackson has allergies because of the dark purple circles he gets under his eyes, the doctors all call these "allergy eyes". I just won't rest until I know for sure.
This has just been one hell of a week. I'm emotionally drained. I want my baby to be well and to feel good and hear all that the world has for him to listen to.
I'll keep you all posted, and thank you from the bottom of my heart for the emails, texts, messages and prayers. I can feel them and it means so much! Please keep the prayers coming!