08 July 2009

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).


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.


  1. Hey Lisa. We have had similar issues with Oz. When he was about 33 months old, he had a chest x-ray, and the tech said his heart was a bit enlarged. We went home and freaked out and started reading stuff online that scared us so badly. We found out on a Friday, and we couldn't reach his doctor, and on Monday his main doc told us that his heart was fine. they had done a thorough scan at birth, the x-ray is notoriously hard to read, etc. It wasn't a good feeling, and it scared me so bad I didn't even blog about it. Also, we have the same dino breathing mask that we use daily. Oz is always congested, and he has a bronchioscopy scheduled for Sunday. The day after his first birthday. Anyway, he tolerates the mask fairly well, but the best time to do it is when he is asleep. Good luck to you, if that means anything.

  2. We will be checking back on Sheridan often. Best of luck with the cardio doc.

  3. I meant 3 months old. Not 33 months old.

  4. That is deeply concerning indeed! Best of luck with the cardiologist. Keep us posted.

  5. Oh Lisa, what a scary thing to happen to your little sweetheart. I hope everything turns out fine.

  6. sending good thoughts your way.

  7. Sounds like Joey's problem too (when he was two months old). They said it was bronchialitis that was caused by a virus but Joey never had a runny nose or fever. In our case Joey was only two months old and his airways were so small that he had to be hospitalized. The second time he was coughing and wheezing, they again said it was bronchialitis but we were able to manage the symtoms with the xopenex and the nebulizer at home. It was so hard to get a four month old to sit still with a mask on his face. We ended up having to hold it about a 1/2 and inch away. I will probably be doing a lengthy post about the whole bronchialitis thing either tomorrow or next week.

  8. Ah, the chest x-ray. I call it the "Baby Jessica" since that's the pose it forces kiddos into.

    I'm hoping, too, that the Cardio appointment goes well. We've also had much better success with the neb when M is either asleep or on her way there now that she knows she has the power to remove it from her face.

  9. I tried to post a comment and I think I clicked out of the site before it posted??? I can't wait to haer how the appt went yesterday... I am hoping for the best news possible! also - sheridan looks absolutely adorable doing his breathing treatments, what a sweetie!!!!!

  10. aww darn, my comment has disappeared! Anyway, how scary! I already read the update...hugs sigh of relief!

    Love the photos of Sheridan getting his breathing treatment...adorable!