3 year well baby visit

Last Thursday was supposed to be a day dedicated solely to checking up on my babies. Unfortunately, I only got to see about my first baby because my doctor got stuck in emergency surgery.  My first OB appointment had to be rescheduled for tomorrow instead.

Jackson's appointment went amazing well, and speaking of well, it was his first well baby check-up in about 2.5 years! Man oh man have we come a long way with his health, thank you God!

Jackson weighes 36lbs. and is 37.5' tall, which puts him in the 87% for weight and 41% for height.  He's always been a little thicker than taller, just like his daddy:)

After checking out Jackson's sinuses and tonsils, his doctor thought for sure that we'd decided to go ahead with sinus surgery! He was surprised when I said we had not, we just finally had him healthy and under control.  Jackson's tonsils have returned to a normal size, his ears are clear and tubeless, and his sinuses are not infected!!! This is the first time he hasn't had a sinus infection in 2.5 years, y'all.  The months of antibiotics were hard, but obviously worth it.

Jackson got one quick shot before we were on our way! He cried for a minute, but was happily distracted by stickers and a promise of a popsicle:) I got all of his prescriptions refilled and a new spacer for his inhaler.  Now we'll be able to keep one at school and one in my purse, I've learned to never leave home without it!

Everything else was pretty routine.  Jackson is potty trained and right on track developmentally.  He just started in the Pre-K3 program at school and we're super excited that all is going so well! Jackson loves going to school and talks about seeing all of his friends and his teacher every Sunday night, and can't wait to see them the next morning.  I can't tell you what that means to us.  I feel like his little school is such a hidden jewel!

Happy boy with his stickers:)

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Test results...

Just a quick post to let everyone know that Jackson's immunology test results came back and everything was normal! While this is such wonderful news, it still means that we don't have the answers as to why he's always sick. But, we are overjoyed that there wasn't an underlying immune deficiency that was going undiagnosed.

Jackson is tolerating the antibiotics pretty well, even now that I'm dosing him correctly...momma fail moment last week when Mr. discovered I was only giving him 1/2 of the dose prescribed. I couldn't figure out why all three of Jackson's doctors were calling to check on him.  I knew the prescription was very aggressive, but I was shocked when we realized we were supposed to give it to him twice a day.  Now I know why everyone was so concerned, I thought it was a lot just once a day!

Anyway, we're dosing correctly now and have about 4.5 more weeks to go. We have decided to wait on allergy testing until Jackson's done with the antibiotics. I'd hate to put him through another test if his issues are because of an infection somewhere and not allergies!

I hope y'all are having a nice holiday weekend. We've enjoyed the blustery, raining weather from Tropical Storm Lee and have slept more hours than we've been awake! Jackson especially needed to catch up and rest his little body:)

More updates soon...

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We didn't make it...

Well we didn't even come close to making it 6 weeks without seeing a doctor. We only made it one week, to be exact. Why does this keep happening?!?

I'm in search for a bubble to put my sweet Jackson in at the moment.  So, if any of you have ideas or recommendations on how I can keep this kid out of a doctor's office, I gladly welcome them!

10 days after Jackson finished his last dose of his antibiotic, the cough came back. After two whole weeks of not one cough and a happy boy, I'm completely devastated. Monday morning I heard the cough and my heart broke. I hoped that it was just a fluke, but by yesterday he was coughing all day and all of last night.

We went back to the allergist this morning and he believes that Jackson has come down with yet another infection.  However, I am not sure if I buy this or not...

He still doesn't think this is allergy related, so I question whether or not I need to take him back to our pediatrician?!? We're starting another round of antibiotics this morning and he got a steroid dose as well.  I'm hoping that the second round of antibiotics will continue to fight whatever is bring Jackson down.

The glimpse at life with a well baby was too wonderful to stop fighting for. I love my baby, but y'all just don't understand what a different kid he's been for the past two weeks. Falling back into the whiny, clingy, pissed off toddler last night was just so frustrating. At least now I know that this is because he doesn't feel well and not his "terrible two" personality.

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Clean bill of health...

Y'all, I can't hardly believe that I'm actually typing this - MY JACKSON IS HEALTHY!!!

We had our follow-up appointment this morning with our allergist and their diagnosis seems to be right on - Jackson has most likely had a bacterial infection in his lungs since he was sick around Halloween.  We just never found the right antibiotic and steroid mix to totally kick the infection out of his system...until now!

As of today, Jackson's lungs are official clear, his cough is gone, and there is no need at this point for any allergy testing!!!

Mr. and I cannot tell you the relief this brings to us.  Seriously, Mr. even got teary-eyed during the appointment.

We'll keep Jackson on the Flonase everyday and dry max as needed.  These are just because we live in Louisiana and who doesn't have some sort of allergies right now?!?

We can drop the Xopenex from his breathing treatment and only use it as needed for a cough or rattle, which again can be expected just because of the climate we live in.

The doctor wants us to continue Pulmacort daily as maintenance at least through the Spring.  He imagines that Jackson will require this drug seasonally, which is fine.

The last medication Jackson will continue to take is the Prevacid, just for the next month to see if he was having any silent reflux issues.

And the best news, Jackson doesn't have to go back to the doctor for another 6 weeks!!! The real test will be if we make it that long without going to the doctor...which hasn't happened, ever.

The grand total in medical expenses this month topped over $1,000 - but having a healthy boy at the end was worth every penny.  Jackson is like a new kid I tell you, and it's amazing.  He is so happy and you can tell he feels good.  I'm rethinking the terrible two preview, maybe it was just a desperate cry for help to make him feel better!

my happy boy with his Popsicle

a little water fun after dinner

this chair can finally be used for lounging instead of breathing treatments around the clock!

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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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Back to the doctor

I'm sure y'all are just as tired of hearing about Jackson's health as I am writing about it. However, it's nice to look back and use this as documentation to remember what's happened when. I reference these posts a lot before doctors appointments!

Jackson is never well, never 100%, never as good as I believe he should feel.  Some days are worse than others, and well sick has just become our normal.  Jackson is still a wonderful sleeper, and thankfully, he doesn't let the snot nose, wheezing and coughing bring him down.  I truly believe the sound of his cough is much worse than it actually feels.  Wednesday and Thursday night and morning, Jackson coughed and coughed and coughed.  Once these coughing fits start, they last for a good hour or so.

Last night was the worst night we've had in a long time.  Jackson randomly ran fever on and off all night.  It never goes above 100 degrees, so I rarely give him anything for it.  As fast as it comes, it goes.  One minute he's warm, the next he's nice and cool.

At about 9:30 last night the coughing got so bad I went into his room and got him.  We slept together in our recliner, upright, for as long as my neck and back could take it.  Then we went into our bed and slept on a couple pillows up for a little while.  At about 1AM another coughing fit started and it was a rough one. 

I gave him another breathing treatment and by about 3AM we were all back to sleep for the rest of the night.  I decided to let Jackson sleep in his crib with the humidifier on full blast and turned our monitor up to hear for him.  I just worry that he'll cough something up and choke, it scares me to pieces.

When we woke him up at 8AM this morning, the coughing started once again.  I felt terrible waking him, but it's a work day and there was no other choice.  I called our pediatrician and asked for the first available appointment this morning.  I went ahead and gave Jackson his cocktail of medication and we were on our way.

We went back to the pediatrician instead of our ENT because this is clearly a lung/respiratory issue not his ears, nose or throat.  His doctor couldn't hardly believe Jackson sounded the way he did after seeing the list of medication the ENT has him on.  His cough was in full force and he was very wheezing for just finishing a breathing treatment.

Outcomes of today's appointment:
We're all on the same page that we have to get Jackson well and figure out the root of the problem. 

Jackson's ear's aren't infected, but his tubes are blocked due to the amount of congestion he has.  Which is most likely why he failed his hearing tests.  He'll continue to fail until we get him well. Ear drops will be needed for the next two weeks and again anytime he's sick - which right now is all of the time!

We're going to treat him for GERD/Silent Reflux for a month to see if that helps the cough.  This will be a new prescription given 30-minutes before dinner.

We are doubling the amount of Pulmacort Respules and giving him one large dose a day, instead of breaking it up twice a day.

Xopenex will still be needed to relieve coughing, as needed every 4 hours.

We're replacing Singular, Dry Max/Vazotan, and cough medicines with Flonase.  If we dry up his nose, and clear up the congestion with the Flonase, then the post-nasal-drip will stop with the coughing.  Fingers crossed!

We are going ahead with the full panel allergy test, ASAP.  Jackson's allergies and asthma seem to be too bad to wait until his 2nd birthday.  I'm slightly overwhelmed at the thought of spending two days a week in a doctor's office for allergy shots in our near future, but if it works, it will be worth it!

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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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