Henry's Homemade Formula

Our journey towards adding "real" foods into Henry's Homemade Blended G-Tube Formula

His tube fell out… again!

Ok… is getting a bit repetitive!

Last week Henry tube fell out… again!  OK… it didn’t actually fall out, but was more dangling precariously about to fall out when I noticed it.  This is the third time that I can remember and once again I was home alone with him.  Not that that’s much of a big deal, as it’s easy to put another tube in… but seriously, it’s still not much fun.  It was actually Henry who noticed something was wrong this time, as his extension tube was still attached and it was pulling and hurt.  He kept pushing on his tummy and when I asked him what was wrong, he told me it hurt (gosh is it ever nice now that he is talking more!).  We took a look and what do you know… there was his tube just about ready to fall out, being pulled painfully down by the weight of his extension tube.

It may not seem like it, but you have to believe me… we do actually check the water in his balloon every week to ensure it’s inflated properly.  How it keeps getting pin-point sized holes in the tube is beyond me.  It was in the same place as last time… on the shaft, not in the actual balloon.  We were due to change his tube this week anyways, so it had been in for 3 months already.

And Henry is great… he knows that if something is wrong with his “food button” (he has two buttons… a belly button and a food button), he needs to lay on his back while mama and/or daddy fix it.  So he laid down while I grabbed a new g-tube kit and checked the balloon for leaks.  Then I pulled the old one the rest of the way out and pushed in the new one.  It hurt him a little more this time as his g-tube site has been a little swollen ever since he was sick last time.  We don’t usually feed him overnight, so when we give him Pedialyte overnight, his tube often gets pulled a bit as he moves and this can cause it to get irritated.  Because it was already a bit swollen, it was harder to push in the new tube and he wasn’t too happy about it.  But a few minute later he was all smiles again and back to playing.

I figure we’ve been pretty lucky up until now…we’ve always been at home and we’re always noticed it right away.  One of these times we’ll be out somewhere and I’ll be trying to put in a catheter tube in the mall!  (ack!).  Or worse… we won’t notice it right away and the hole will start to grow over.  Oh well… no use worrying about thing that haven’t happened :).

Cheers, Shelley

 

 

 

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From scoliosis to lordosis…

As part of our annual visit with the neurology clinic, we once again saw Dr. Reilly, Henry’s orthopedic surgeon.  We really like seeing Dr Reilly, as he’s patient, takes time explaining thing, explains them in way that we can understand and is very practical.  Plus, even if he’s rushing out the door… if I think of one more question he always come back in the room, sits down and gives us his complete attention.   Yes, we often have a long wait an hour or so to see him… but we’re used to that and know it’s because he gives every family the same time he gives us.

Since his first appointment with the neurology clinic at about 2 months of age, Henry has been monitored for scoliosis.  Simply put, scoliosis is a curve in the spin, from one side to the other.  It can be more or less severe, based on the amount the spin curves, and can be caused by lots of different things.  Henry’s was considered neurological scoliosis, because it is symptom of his low tone. His little muscles just weren’t strong enough to keep his spin straight.

It’s tough to know just how back it was at first, because getting a good Xray was near impossible.  But it was serious enough that we did them every 6 months for a while, and Dr Reilly was concerned by what he saw.  But.. the good news was… as Henry grew more mobile ,his back improved… and kept improving!

At this visit, the good news just got better…!

According to Dr. Reilly, Henry’s back no longer shows signs of scoliosis. 🙂  His curvature has straightened to the point that his visual exam leads him to believe that if he still does have any scoliosis it is so minor as to be undetectable!

Yippee!

Henry does still have some lordosis, or sway back.  When sitting or standing, his hips and lower back tilt forward over curving his lower back. This doesn’t happen all the time, but is noticeable.  Essentially, this is caused by having weak butt and quad muscles.  As he continues to get stronger, this will hopefully resolve itself too.

All the time we spent using his walker, playing (aka… doing exercises), making wearing his orthotics “fun” and finding ways to support him moving when he wasn’t able to himself… it’s all paying off!  Dr. Reilly went so far to say that he figures by the time Henry is grown he will have no concerns with his spin at all!  🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂

An even BIGGER YIPPEE!!!

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Back to the hospital again

I’ve been neglecting the blog a bit over the summer, so need to do a few posts to catch back up again…

We were back to the ER again in late August as Henry got a cold and had trouble breathing again.  The symptoms began the same as they did when he has a viral lung infection in June, but this time things went much better.

Friday morning he began to have a runny nose and sneezing… the typically beginnings of a cold.  We were pleased because often Henry’s first sign of a cold is vomiting, and this time he didn’t.  He was tired, but not lethargic, and kept his food down fine.  He had a restless sleep Friday night, which isn’t that unusual for him as he’s often not the best sleeper.  He came into bed with me and we did not bad. Saturday he got sick a couple of times, but not massive amounts.  We knew he was definitely sick when he napped for 4-5 hours Saturday afternoon… unheard of in our home unless he’s sick!

This long sleep meant that he didn’t want to sleep that night and he didn’t fall asleep until we went to bed with him about 9:30pm.  Because he’s gotten sick, and had slept through his snack, we started a slow rate of Pedialyte over night.  Once bonus of having a g-tube is  we can keep him hydrated easier.   He  slept the first part of the night not too badly, but I could already hear the strain in his breathing.  Between the sound of the pump, the sound of his nasal congestion and wheezing that was starting to develop in his throat… needless to say I didn’t sleep.

I woke Shawn up once to listen to him breath and we decided that since he was asleep, we would let him sleep and decide in the morning if we should bring him to the hospital.  By Sunday morning, we could see all the signs we’d learned of difficult breathing:

  • Tracheal tug: a slight inward tug in the lower throat area, near the small space formed where the two sides of the collar bone join under the chin.  You can see the skin getting “tugged” inwards as a person breaths.
  • Shoulder raises: when the whole chest cavity moves up and down with each breath, indicating a lot of effort.  We notice this best by Henry’s shoulders going up and down.
  • Increased respiration rate: he breathing becomes shallow and fast as he tries to get oxygen.
  • Diaphragm recession: the skin is sucked in between the bones of his rib cage and at the bottom.  Similar to the tracheal tug, this happens with each breath.

So… given all of this,we quickly packed and off we went to the ER.  Early Sunday mornings at Children’s Hospital ER are great… usually quiet and not a long wait, and this time was no exception (try to get there before noon if possible!).  We checked in, waited about 5 minutes and we brought to a room.   I already knew he was doing better than last time, but the fact that we weren’t escorted in asap confirmed it.

So… after a few tests, they started Henry on the standard asthma protocol.  He wasn’t diagnosed with asthma, and still isn’t, but this was their first try at getting his breathing back under control.

He was given Ventolin (the standard “blue” puffer you see people with asthma using) to help immediately open his airways.  Ventolin is the “emergency” medicine as it acts by quickly opening airways, but it only lasts a few hours.

Since Henry is a toddler, he needs to use an air chamber to ensure the medication actually gets into his lungs.  The AeroChamber creates an air tight seal with an internal valve so that we can count Henry’s breaths.  Trust me… not fun at first!  Although by the time we’d done our last dose at home, he liked it and wanted more.  You can make just about anything fun if you can put the right “spin” on it :).

He was also given two more medications, a second white puffer of which I can’t remember the name which acts in combination with the Ventolin, and Dexamethasone (DEX) which is a steroid.  DEX also works to open the airways, but does so by relaxing the muscles.  It takes longer to work, but lasts up to 24 hours, which is why it and Ventolin are often used together.

The combination of these drugs, with doses over a few hours, seemed to go the trick and Henry was breathing better.  We were still there for close to 8 hours – which is normal.  They want to monitor him for 3 hours or so once his breathing is back to normal, before even considering sending him back home.  We were offered the option of staying over night, but we elected to go home.  We know what to look for well enough that we would come back if needed.  And we’re used to giving him medications and other “not to nice” procedures (like changing feeding tubes, etc), that we felt we could continue the medication at home on our own.

So… we made it home by dinner (thankfully!) and I made a quick trip to the pharmacy.  We continued the Ventolin and DEX at home for another couple of days… and miraculously enough, but the time we were done Henry was actually enjoying wearing the mask!  Thank goodness for the teddy bear logo plastered all over it.  Between that and the three of us counting to ten together as he breathed… he was happy to lay down and get wrapped up “hotdog” style for his teddy bear mask!

 

So why did things go better this time…?

Mostly, because, we brought him in much sooner – as soon as we recognized he was starting to have trouble breathing.  Because we knew exactly what to look for, we were more confident making the decision to go to the ER.  It’s funny though… we still debated a bit about whether we really “needed to go”.  Why this is, I’m not to sure… some part of us doesn’t want to arrive only to be told we’re over reacting and sent back home again.  Not that this has ever happened… or likely would ever happen… but for some reason we still debated.

 

Anyways… by Tuesday he was feeling better, breathing normal and well on his way to recovery :).  We have the Ventolin at home and can try that on our own the next time he gets sick.  Hopefully this will help up avoid another trip to the ER.

 

Cheers, Shelley

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