Another day, another doctor

Y'all, I think I'm going to have to change the name of my blog to "mother who spends her life in a doctors office with a sick kid"! Seriously, something has got to change.  Between co-pays and prescriptions for Jackson, I'm going to go broke! However, I have high hopes that things are going to get better.

During Friday's appointment with our pediatrician, Jackson got a cortisone shot and we were told that Jackson needed to be allergy tested ASAP.  Well Friday night was by far the worst night, ever! I expected the shot to help and boy was I wrong.  We rotated between breathing treatments, hot steam shower, the recliner, our bed and the couch.  Jackson's cough and wheezing was just terrible.  Words cannot describe the pain and struggle Jackson was in. Not to mention, he also ran 100 degree fever most of the night.

I'm no doctor, but since when do you run fever with allergies.  And if this was an allergy/asthma coughing attack, then his fast-acting rescue drugs should have helped, but did not.

Since none of us were able to sleep and staying inside didn't seem to help, we decided to walk in the Race for the Cure Saturday morning.  Surprisingly, Jackson did really well.  He coughed a little during the walk, but nothing at all like the night before.

Again, I'm no doctor, but if this was allergies then wouldn't he be worse outside with Spring in full bloom?!?

Saturday night was amazing, Jackson slept from 10PM straight through to 8:30AM.  Hallelujah, the medications must finally be working!!!

We all woke up Sunday feeling so refreshed and hopeful.  However, as the day progressed we were singing a different tune.  The coughing kept Jackson from napping and playing and he got very pissy.  The days of coughing were finally catching up to him and bringing him down fast.  With every cough, you could just watch him hold his chest in pain.  Talk about heart breaking and feeling so helpless.

First thing Monday morning, I called our pediatrician and told him something was just not right.  I begged for something to help Jackson's cough - he said to give him honey.  I mean seriously, honey.  I try and keep my blog PG, but I'm sorry, you've got to be fucking kidding me.

Well, all I can say is thank God for my momma! As I've said before, she is a pharmaceutical drug rep and spends her days with allergists and pulmonologists.  So literally within the hour, she had her top docs looking at Jackson's medical history and working together to figure out what in the hell is causing him to be so sick.

We were able to get in to see an allergist yesterday, and we finally feel like we're heading in the right direction.  Here's how our appointment went:

Is it possible that Jackson has allergies?
Absolutely.  He has a tone of clear mucus in his nose, which is causing a good bit of drainage down his throat.  

Are his allergies bad enough to make him this sick?
Not likely.  A child younger than 2 should not be this sick just from allergies.  There's something else going on here.

Does he need to be allergy tested?
Maybe, but again, we need to find out the root of the problem first.  And this isn't it.

Shouldn't his maintance (pulmacort) and rescue (Xopenex) medication work better?
Exactly, Jackson's on a very good dosage and he doesn't seem to be responsive to either.  We did a treatment in the office and confirmed that it didn't really help.  This would indicate that the big problem isn't asthma, which is a good thing.  I would love for Jackson to be asthma free!

So, what gives?!?
Looking back on all of the medications Jackson's been on since January, he was not properly treated for Pneumonia.  We did steroids and breathing treatments for the RSV, but no antibiotics for the bacterial Pneumonia infection. In her personal opinion, we're dealing with an unresolved case of Pneumonia.  Jackson should have been hospitalized when he had RSV and Pneumonia, with out a doubt.


His ears looked great, no blockage at all.  She said not to worry about the hearing test, Jackson is obviously not deaf.  He's a boy and he's sick.  We need to get him well and then see.

Now what???
Jackson is on a super strong antibiotic for the next 5 days, and he got more steroids yesterday and today.  She changed up his medications a little bit, including a different GERD medication twice a day.  Silent reflux could also be a factor here.  We need to dry up his nose and get his lungs cleared up!

In a perfect world, by this time next week, we'll have a perfectly healthy Jackson! Fingers and toes are doubly crossed hoping that this finally fixes our precious boy!!!

Jackson's revised medication list

My little boob man before the Race

Oh.So.Pitiful.

Riding:)

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Coughs, Urgent Care, Doctors, Failed Tests...

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!

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Treatment plan for Jackson

Last Thursday and Friday were cold days for us in South Louisiana. We had a little freezing rain and ice, but nothing compared to pretty much the rest of the country. It was just enough for Mr.'s office to close both days, but not mine.

With that said, Jackson got a clear runny nose and began coughing again in the middle of last week. I figured that he just had a cold. He was sleeping great and didn't seem sick at all. Between the hot and cold weather, everyone's allergies and sinuses were a mess.

But by lunchtime on Thursday Jackson was refusing to eat and had a fever. Lovely. Just lovely. I called our pediatrician's office, but they had closed due to weather.

So I called Jackson's ENT. I had a little breakdown with the receptionist and she got us into the doctor's schedule!

I went home, grabbed Jackson, and went by our pharmacy {which is another story in it's self. they are no longer our pharmacy. Did I mention I'm a hormonal mess?} to get a print out of every medication Jackson has been prescribed in the past 6 months.

The print out of medications was so helpful.  We've been to our pediatrician, the ENT, and a walk-in clinic.  So it was nice to have one doctor take a look at the big picture.   Jackson has been sick once a month since the fall.  He gets a two week antibiotic, he's well for two weeks, and he gets sick again.

Our ENT is sure that this was all due to his ears.  He would have been well after his tubes/adenoid removal, but feel victim to RSV and pneumonia.  Otherwise, his ears are doing beautifully and his tonsils looks great.

When I say that we had such a thorough visit, it's a complete understatement.  The doctor explained everything to me so well and talked through what medications Jackson needed and why! I think she sat with us for close to an hour.  In her opinion, we should have treated Jackson for at least one month and up to three months.  No one told me this, the two other doctors both said to stop once the cough and wheezing stopped. 

Long story short, the steroids and medication he was on helped, but its been a couple of weeks and they've worn off.  Jackson doesn't have RSV again, but his lungs/bronchial are inflamed and basically really pissed off. 

To fix that, and get Jackson totally well, we're now on a combination of two breathing machine/nebulizer medications, twice a day for at least the next month.  We also have two prescription cough medications that he gets orally, twice a day for the next month.  And a singular tab, once a day from now on. The best thing about this plan, it doesn't include one antibiotic!!!

Jackson can't be tested for allergies until he is two, and we will begin that process then.  Hard to believe my baby is 20-months-old today.  That's just a short 4 months shy of being 2!!! Oh time, please please please slow down.

At least I get so snuggle with my sweet boy twice a day for 25 minutes while he gets his treatments:)

this was from last week.  thankfully, Jackson is a creature of habit and enjoys the treatments much better now:)

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