Little Dude - 11 Months

Age: 11 months

Weight and height: 16 pounds, 3 ounces and 28 inches long.  In January, he had pneumonia and RSV and wasn't able to handle his regular volumes of food so he lost some weight.  He was down to 15', 14", but thankfully he's starting to put some of that weight back on now.

Wearing size: Size 3 diapers and 9-12 month clothes. 

Likes: He loves attention and is total little flirt with the sweetest smile.  He loves army crawling around the house and bugging the big kids. 

Dislikes: He really hates it when I do his G Tube and skin care every morning-not because it hurts, but because he can't roll over and play when I'm doing it.  He also hates his skin care routine because he strongly dislikes having his hands, arms, and head touched and moved around.  To get him to lay still and stop fighting me, I play a Youtube video on my tablet for him to watch while I'm taking care of his tube (he's a big fan of Peter Hollens, Lindsey Stirling, and Baby Einstein). 

Eating habits: He gets four bottles a day with 5 ounces of water and 3 scoops of the Alimentum formula which is concentrated for lower volume.  I start each feeding by offering the bottle and whatever he doesn't eat is tube fed.  He drinks approximately 50% of his formula.  He eats pureed baby food 2 times a day which I add a teaspoon of olive oil and a tablespoon of rice cereal to for added calories.  He had been doing well with gluten free baby puffs, but in the last month, has been throwing up every time he has anything more than purees.  I'm attributing that to being sick which makes him even more gaggy than usual. 

Sleeping habits: He takes a morning nap from about 9:30 am to 10:30 and an afternoon nap from about 1 pm to 3 or 4 pm.  He sleeps okay at night, but does still wake up several times.  He usually goes right back to sleep when I give him his pacifier.

 
Milestones: He finally learned how to sit unsupported!!  This was a milestone that we've been working on for months and he finally got strong enough to be able to do it.
    
Miscellaneous: He was sick for ALL of January with pneumonia and RSV.  It was a very long, very difficult month for both of us.  He was hospitalized for one night, had three emergency room visits, and saw a doctor several times.  He also was on three different antibiotics.  I'm so glad he's finally feeling better from that, but his lungs are already sounding junky again so I know that something else is starting up. 
We have started taking him to a different health care system because we felt that it was time for some fresh eyes on him.  I really loved some of his doctors at Mayo and we're going to miss them, but it's much better for all of his care to be at one place to avoid confusion so he has all new specialists now.  The best part is that his new primary care doctor is a genetic specialist and is very good at caring for medically complex children. 




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August: The Easy Month

August was supposed to be our easy month, our month off from doctors and diagnoses and tests.  The only appointment Little Dude had scheduled this month was a therapy evaluation on August 1st (they're going to monitor him with monthly home visits, but he doesn't need regular therapy other than that.  Yay!) and we weren't expecting any test results this month.

I really need to quit getting my hopes up about stuff like this...

Little Dude started a 3 week round of antibiotics in late July to treat a bacterial infection in his lungs.  After a week, I noticed an improvement in his coughing fits.  A few days before he finished the antibiotics though, I noticed an increase in his coughing, choking, and breathing difficulties.  As his condition fluctuates a lot, I didn't think much of it-just increased his nebs and kept an eye on him.  Then, on Tuesday night, he started having a really hard time breathing and by Wednesday afternoon, a fever had joined the party.  By that evening, he'd gotten much worse so I decided to take him to the doctor Thursday morning.  Little Dude barely slept that night and was absolutely miserable.

The next morning, I woke up to find that I was sick with chills, fever, stuffy nose, sore throat, and aches all over.  I could barely get up, but fixed a bed on the living room couch and moved Little Dude's whole operation over there so I could rest while caring for him.  I called the doctor and as soon as they heard that he was sick and having problems breathing, they said to bring him over as soon as possible despite the fact that the doctor was booked all day.  I was in no condition to leave the house so my mom came over to take him and a note with all his info to the doctor for me.  I passed out as soon as she left and slept until she came back (I slept through 3 phone calls from her even though the phone was right next to my head, whoops!).  Probably not the best thing since I honestly have no clue what the other three kids were doing during that time, but no one got hurt or destroyed anything.  Thankfully, that nap was all it took to get me feeling just a smidge better because Little Dude came back with instructions to head to the ER.

I packed an overnight bag for Little Dude and me, and my dad drove us up to the ER while my mom stayed with the kids (Hubby was sleeping since he was in the middle of a run of night shifts).  I was so glad my dad could drive us since Little Dude needed someone in the backseat with him to monitor his breathing and choking.   

We spent the afternoon at the ER, where Little Dude had an x-ray of his lungs that showed that he had pneumonia.  They tried to start an iv for antibiotics, but absolutely couldn't get one in nor could they get the blood they needed for a blood draw.  Little Dude has impossible veins, and the only way to get an iv in him is when he's sedated.  After spending over 40 minutes futilely poking my poor baby, they decided to give him the antibiotic in a shot instead.  If I'd known that was an option, I would've asked for it immediately since I knew they weren't going to be able to start an iv.  It took two techs and a long time to get just enough blood for the labwork.

Around 6 pm, Little Dude was admitted, and we were finally sent upstairs to a room on the peds floor which incidentally was right next door to the room he had in May.  He spent the night there for observation.

Because Little Dude was keeping his O2 sats above 90 on room air, he was able to come home the next day with an oral antibiotic.  If he didn't have his G Tube, they would've kept him longer because of concerns for dehydration, but thankfully, we can get plenty of fluids in him even though he's barely taking any formula by mouth right now.      

So, I'm just a little freaked out about cold and flu season now.  Little Dude's lungs and immune system are not in great shape and both Princess and Little Man will be bringing germs home from school this year.  If you want to find me this winter, I'll be the crazy lady with lysol in each hand and a "don't touch!" sign above the baby giving the stinkeye to everybody with a runny nose.  

Breathing: An Unneccessary Addiction?

Last week was...interesting. Maybe horrific would be a better word.

On Saturday night, Princess started having a hard time breathing, as did I. By Sunday, she was taking nebtreatments which didn't seem to do any good. She spent most of the day gasping, wheezing, and sounding like she was about to take her last breath. Scary. Especially knowing from experience as I do, that severe asthma can be fatal at worst and traumatizing at best. On Monday morning, I called the doctor and got Princess in at 1 pm. The doctor diagnosed her with pneumonia and sent us home with an antibiotic. Tuesday and Wednesday, Princess and I both seemed to improve which was good because I was about ready to have a break-down worrying about PRincess so much while being unable to breathe myself. On Thursday, Princess and I were both much worse. I got Princess into the doctor again. This time, chest x-rays and a blood draw were ordered.Princess  does not particularly care for doctors and nurses probing, touching, or generally looking at her so I was concerned about sending my baby girl off into the x-ray room by herself (They still haven't changed the rule about pregnant women being near the x-ray machine). Apparently however, she and the nurse in charge of baby wrangling that day really hit it off and the only time Princess cried was when the x-ray technician tried to touch her.

The blood tests came back negative and the chest x-ray showed that Princess had pneumonia. DUH! Tell me something I didn't know. The doctor assured me that, since Princess didn't appear to be sick in any way or wasn't even running a small fever, that she had the "best kind of pneumonia to have." That really made my day especially since my daughter was still lying on my lap wheezing and exhausted from lack of oxygen. We were sent home with a prescription for prednisone this time.

Being a lifelong asthmatic myself, I've been around the block a few times with prednisone. In case you don't know, prednisone is a strong steroid that is often given to asthmatics when nothing else is helping. It weakens your immune system, does weird things to your stomach and appetite, can bloat you and make you gain weight. And that's just a few of the lovely side effects. Not something I really wanted to give my daughter, but breathing is kind of important and I know how much prednisone can help.

Princess loves taking medicine, and I've had to hide her baby tylenol because otherwise she begs for it. So I was totally unprepared for the reaction I'd get to the prednisone. The stuff tastes incredibly strong and burns your throat on the way down. Being a strange child, I actually didn't mind the stuff when I was a kid.  Princess  does not take after me in that way. She started eagerly sucking it down and then stopped, gave me a stony glare that clearly said, "How dare you give me something that tastes like this." and turned away. Try as I might, not another drop went down her throat. Most of it made it into her mouth, but was rejected and kicked out immediately. The next morning, I decided to be sneaky. So I made some really strong sickeningly sweet chocolate milk that I knew Princess would absolutely adore. Then I made sure she wasn't watching and surreptitiously poured 2 teaspoons of prednisone in the milk. I handed the cup to Princess who happily took it from me and began gulping it down. Then she realized that I had sabotaged the chocolate milk and I was graced with another "if looks could kill" glare as she handed the cup back to me. Try as I might, she only drank about 2 more sips. In desperation, I called the doctor's office to see if they had any ideas on how to get a 21 month old to take some of the worst tasting medicine available. The nurse cheerily suggested I put it in chocolate milk because "that works every time." She was rather taken aback when I informed her that I had already tried that and my one-in-a-million kid had not cared for it at all. She offered to call the pharmacy and see if they had any ideas. The pharmacist didn't call me back that day and so that night, I recruited Hubby's mom to help with the predisone taking. She used M&Ms as a bribe and managed to get both teaspoons into Princess. I was very relieved to see that Princess had finally taken a full dose of her much needed medicine. The stress of taking care of a child who couldn't breathe, trying to get her to take her medicine, not being able to breathe very well myself, and the incredibly crabby, clingy mood Princess had understandably, but still frustratingly been in for the last couple of days was wearing me down and I was literally standing on the edge of the cliff ready to push someone (probably Hubby) off of it.

Thankfully, Friday night I got a reprieve from the governor. My parents were going to a concert called Bowfire (look it up on youtube, it's amazing) and I had guilt tripped Hubby about not getting me anything for my birthday until he said I could go too. The timing could not have been better. We met one of my mom's old friends at an Indian restaurant which was really good food that I didn't have to cook or clean up afterwords. Then we went to a concert where I managed to relax and enjoy myself. By the time I got home that night, my nearly dead battery had been recharged and I was ready to get back to real life.

Saturday morning, after convincing Princess to choke down another dose of prednisone, I got a call from the pharmacist.
"I put the wrong dosage on the bottle. It's not 2 teaspoons twice a day, it's 2/3 of a teaspoon twice a day." he said.
I stopped breathing until he continued. "It won't hurt her to have taken so much, but it is hard on her stomach. Better skip a dose tonight."
I was furious. Was he saying that I had just forced my daughter to take over twice as much of a harsh steroid as she needed?!?!?!? Since I've been going to the same pharmacy since I started taking medicine and never had a problem before and because Princess was not going to suffer any permanent damage from the overdose, I managed to forgive him, but I will be triple checking everything from now on!

So anyways, that's my week. Lets just say I don't do well under pressure, but everyone came out alive. Even Hubby who almost didn't make it on Friday when, on my ONLY day to sleep in, Princess uncharacteristically woke up at 6:30 am. He could've been sympathetic, but instead his reaction was, "Oh good, you're up. Now you can pack my lunchpail before I go to work." But I managed to refrain from killing him (this time) and we're once again a happy semi-healthy family.

Unsolicited Advice:
I understand that not everyone has this tremendous resource at their fingertips, but whenever I get sick, I call in reinforcements to help me take care of Princess and the house. My younger sister was the lucky victim this time who not so willingly did my dishes, swept the asian beetles off my porch and did my laundry. If you have someone like that around, either ask them over or send the kids to their house!