Sheridan's Heart

A few weeks ago Sheridan had a few days where his breathing was very labored and he was wheezing. He has always been very healthy, and Gary and I were certain (as was his pediatrician) that this was due to allergies (e.g., he didn't have a fever, his nose was running clear). We treated him for asthmatic symptoms (he does not actually have asthma) to help him breathe better. At that time, Sheridan was referred to a pulmonologist.

The pulmonologist ordered a chest x-ray to make sure everything was clear, and asked us to monitor his resting (i.e., sleeping) respiratory rate every day over the next month. Also, he prescribed a breathing treatment (Xopinex) so that if Sheridan had another "episode" of wheezing, we could use it to open his airways. We never needed it.

So off to the x-ray place we go. At 7:30am to make sure we don't have to wait in some hellacious long line in the middle of the day. Besides, Sheridan is always bright and cheery in the early morning so I figured that would work in our favor.

They put my baby in what looked like a torture device (click here to see an example of the device in use), and told me to hold his arms up over his head. I thought for sure Sheridan was going to lose it. And he did, but just a little bit. Even the x-ray tech was impressed with how he handled it (and I knew Sheridan had done a great job when, on our way out, the front-desk staff asked when we were going to go in for the x-ray - they hadn't heard the typical screams that come out of that room apparently).

THEN I GET THE CALL

It is never a good sign when a doctor calls you about a test. Ever. They only call when something is "concerning" (a.k.a. potentially bad news). Otherwise they just send you a letter in the mail saying your test was normal.

Turns out the x-ray showed that Sheridan's heart is enlarged ("mildly" enlarged was the word used), and his upper-right lobe of his lung is plugged up with mucus (so it is essentially collapsed and not working well).

So, for his lungs, he was put on the breathing treatment 3 times a day for 7 days. The first set of directions were given was "4 puffs" of the breathing treatment (it's medicine placed in a nebulizer and you put a mask up to the child's face so s/he can breathe in the misted meds). The infant mask is made to look like a dinosaur. Cute, right? Not according to Sheridan. He screamed his flippin' head off. It took two people to give him the breathing treatments. One to hold him down and one to hold the mask. Then the pulmonologist clarifies that I received the wrong instructions...

Each breathing treatment should be 10-15 minutes long.

Say what now? They clearly have never had to give a breathing treatment that long to a terrified, screaming child. Ok. So, maybe they have (that is their job afterall). But I felt so bad for Sheridan - I was nearly in tears when I gave him four puffs because it freaked him out so bad. And now I have to torture him for up to 15 minutes?!

But I sucked it up, started singing, let him see the dino right before turning on the machine, and just did it. The first time he fussed for about a minute, and then he calmed down and spent the next 14 mintues looking into my eyes calmly as I sang to him. What a good boy. And he's never fussed since. When we sit to do a treatment, he just opens his mouth and leans forward slightly to help us hold the mask in place. What a sweetheart.


Also, we have to do chest percussions after each treatment. Today is the seventh day and tomorrow or Friday I will take him in for another x-ray (the hope is that the breathing treatment - which helps open his lungs - and the percussions - which should help manually breakup the mucus - will have done their job and his lung will be clear). I hope so...

For his heart, we go the cardiologist on Thursday for an echocardiogram. His heart is most concerning to me...

Sheridan was born with 3-4 small holes in his heart: a small patent foramen ovale (or PFO), a small patent ductus arteriosus (or PDA), and one or two small ventricular septal defects (or VSDs). Until now, his heart has given him no trouble. Meaning, he's eating, gaining weight, etc. Everything a cardiologist wants to see - if his heart was impacting him negatively, Sheridan wouldn't be doing those things very well. Also, as of his last echo in February, his heart showed no signs of enlargement (and enlargement can potentially lead to lots of issues down the line).

Now all of a sudden it's enlarged??? I'm hoping the x-ray is not accurate (the cardiologist said it is a good tool for diagnosing heart enlargement, but it is not nearly as precise as an echo). If it is, I'm sure we'll still do the "wait and see" game - so far each of the holes has gotten smaller since birth. Which is why I don't understand how his heart can be enlarged now.

In the meantime, what information I have is this: there is no telling what caused his lung to clog up (it is common for children with Down syndrome to have a hard time expelling anything from their lungs - low tone just makes their coughs less effective - so if Sheridan's allergies settled into his lungs, he might just not have gotten everything out). That might be what caused the wheezing. Or, if his heart is enlarged, it can cause the respiratory issues (the wheezing and working harder to breathe, not the clogged lung).

I'm just eager for Thursday's appointment.

So, for now, I hold my sweet, sweet son while he patiently does his breathing treatment and hope that his heart is ok.