Hospital Stay #4...Can We Be Done Yet?

This past week was...not great.  Princess came down with a nasty respiratory virus on Saturday (after she'd been to her cousin's birthday party and infected four of my nieces and nephews, of course).  I isolated Little Dude as much as possible from the rest of the family and washed my hands constantly, but the inevitable happened.  On Monday night, I put him to bed around 7:30 pm.  He was breathing normally (for him, at least), not coughing, not sick at all.  At 8:30, I checked on him and noticed that he was wheezing considerably.  At 11:00, I got his last feeding ready and started to hook up his tube so I could feed him, but realized that he was breathing very fast and hard and wheezing heavily.  He was having mild retractions and was really struggling to breathe.  Naturally, it was Hubby's night to work so I was home alone with four kids.  I called my mom and she walked across town to my house in the middle of the night to stay with the three older kids while I took Little Dude to the Emergency Room.  Once there, they did a chest x-ray and monitored his o2 levels and heart rate.  Neither one was very good, and they decided to admit him for observation in case he needed oxygen.  We didn't get into a room upstairs until 6:30 the next morning.  Little Dude had only slept for a few hours all night and I hadn't slept at all so we both fell asleep when we got up there.  Except that Little Dude wasn't feeling well so he woke up 45 minutes later and that was pretty much it for my sleep the rest of the day.

Little Dude would only sleep while I was holding him.

That day, he seemed to worsen, becoming lethargic and tired with a decline in his breathing so his doctor decided to keep him overnight.  It was a good thing we stayed because he did end up needing oxygen that night.  FYI, we found out the hard way that he absolutely HATES the nasal cannula!  He screamed, cried, and refused to settle down for 3 hours while pulling it out every few minutes, even after the nurse had taped it on.  It was obvious that that wasn't going to work so she switched him to blow-by oxygen which meant aiming an oxygen hose at his face at all times.  This helped him sleep and keep his oxygen levels up during the night.

The Child Life department brought him a swing and an exersaucer to play with.  He loved them both, but could only spend short amounts of time in the exersaucer because he got tired out too quickly.

We'd been hoping to go home the next day, but since he'd needed oxygen during the night, he had to stay another night to be sure he could sleep without it.  The doctor ordered saline nebs for him which helped loosen up the junk in his lungs.  Thankfully, that afternoon, his condition improved and he was able to sleep all night without oxygen.  His oral feeds went way down, but that was expected since he wasn't feeling well.  However, thanks to the G Tube, he was able to get the full amount of feedings in anyway.  He did throw up several times (thank goodness he likes baths!), but not enough to worry about dehydration.

Little Dude was discharged from the hospital last Thursday morning and we were both happy to be going home.  When I walked in the door at my sister's house to pick up the kids, Star was elated.  Not to see me...she was excited to see her baby brother.  That afternoon, she refused to nap because she couldn't see him while laying down and kept asking to go say hi to him.  It's so sweet to see the bond she has with him, even though he's turned her life upside down.  I can see those two being best buddies and partners-in-crime when Little Dude gets older.

Oh, and sweet little Princess recovered quickly after resting all day Sunday.  I was so happy that she felt better so quickly.  She has a residual cough at the moment, but I anticipate that clearing up pretty soon.

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.  

9 Tips For Moms of Special Needs Children

I still have a lot to learn about having a child with special/medical needs, but I have learned a few things since Little Dude was born.  They're things I wish I'd known right from the start so I thought I'd share them with you.

You can read an updated version of this post here on my new blog, Sunshine and Spoons! I hope to see you there!

Thanks so much for visiting Supermommy!...Or Not.  I'd love for you to like me on facebook" and follow me on Instagram!  


 

A Very Long Day

About a week and a half ago, Little Dude started having issues with eating.  He'd start eating and then pull away from the bottle and start crying.  That would go on for 15-20 minutes before he would finally settle down and eat.  I tried a different nipple on the bottle, gas drops, sensitive formula, etc, but nothing seemed to help him.  Over the last weekend, he started skipping feedings and so I decided it was time to take him to the doctor.  I got an appointment for Monday morning at 9:15 am.  Princess was at school, and Hubby took Little Man to the farm with him so I only had to take Star with to the appointment.  Over the weekend, Little Dude had also developed a slight cough and stuffy nose so I figured it would be a good time to ask the doctor about that too.  The doctor listened to his lungs and was concerned that he wasn't breathing very well.  Because he was only 3 weeks old, she decided that it would be best to have him checked out by a pediatrician at the clinic in The Big City.  She called up there and arranged for me to go straight there to meet the pediatrician at Urgent Care.   

Hubby had to lay down and sleep in preparation for working the night shift that night so I knew he wouldn't be able to watch the kiddos while I took Little Dude to the pediatrician.  I started going down the contacts list on my phone trying to find a babysitter who could watch Little Man and Star for me.  It took about 15 minutes, but I finally found someone who wasn't working or already busy.  I ran back home to pick up Little Man, dropped him and Star off with my friend, and started the 45 minute drive to Urgent Care with Little Dude.
  
We arrived and were quickly checked in and ushered back to a room.  It turns out that when you walk into Urgent Care with a 3 week old baby with respiratory distress and feeding problems, you get priority over pretty much everyone else waiting there.  The pediatrician checked Little Dude's oxygen levels and was concerned when she saw that he was dipping into the low-mid 80s.  She ordered tests for pertussis and RSV (which came back negative) and an x-ray to check for pneumonia (which was also negative).  After doing a nebtreatment, his oxygen level improved, but dropped again when he fell asleep.  He was observed for a few hours and she finally decided that it would be safest to keep him overnight at the hospital.  Right before arranging a room upstairs for us, she listened to his heart and detected a heart murmur that she hadn't been able to hear before due to his raspy breathing.  Wanting to be sure that it wasn't anything serious and wasn't connected to the other issues he was currently having, she decided to send us to a bigger hospital in The Big City where he could have an echocardiogram.

While waiting for the transfer order, I spent a lot of time on the phone arranging childcare for the three older kids overnight since Hubby was working and updating Hubby and other relatives of Little Dude's status.  Hubby's mom took the next morning off of work so she could keep the kids overnight.  She also started the prayer chain at our church for Little Dude.

We headed over to the other hospital around 5 pm and were soon set up in a room there.  Hubby called shortly after we got there to let me know that he'd been able to get the night off from work and would come spend the night at the hospital with us.  I asked him to stop and pick up some supper before coming since I was getting pretty hungry at this point.  I hadn't had time to eat breakfast before going to Little Dude's appointment that morning, had gone almost straight to Urgent Care from there, and then finally ended up at the hospital for the night.  There had been no time to eat at all that day.

Little Dude at the hospital.

While we were at the hospital that night, Little Dude's oxygen levels went up to the mid-high 90s and stayed there even when he was sleeping.  He also started eating better.  The echocardiogram was done the next morning and showed a benign heart murmur which we'll just keep an eye on until he outgrows it.  Little Man also has a benign heart murmur so it didn't worry me too much to hear about Little Dude's.  At 1:30 pm, he was finally discharged and we could go home. 

Little Dude looked so tiny in the hospital crib. 

What was supposed to be a quick doctor's appointment turned into an all-day, all-night affair.  We're very thankful that Little Dude is doing well enough that he was able to come home the next day since they had told us that they would be keeping him until he could spend a whole night with high oxygen levels.  Little Dude is especially happy to be home as he did NOT appreciate being constantly bugged for tests and vitals.  Unfortunately, he hasn't been eating very well again since we got home, but he definitely has a virus of some sort (which he probably caught from a very germy 18 month old he lives with) which we think is making it uncomfortable for him to eat.  We're just keeping an eye on him and will take him back to the doctor if he doesn't start improving soon or starts to get worse.