I don't know how many of you remember me, but this is our current situation with our baby. He's the one with the vascular ring, moderate apnea (they finally cleared that up), and on monitors until they figure out what is causing the apnea. There aren't many more choices left. They believe it is tracheomalacia, could also have bronchomalacia. He has already had one bronch, wrong technique, and we are hoping the bronch this Thursday will give us some answers. They say even if it is the malacias, they won't treat him, because he will outgrow it, and he bounces back on his own. Remind me again why we are even doing it? (Rhetorical ?) If it doesn't show malacias to the degree that explains 60%s-70%s, then we are back to not knowing.
Since this last low sat of 69% and no illness at all, he has been having skipped heartbeats on his 02 monitor. We've watched him since Sun morning when the low sat happened. He was more tired that day, started having blue spells again, and was fussier than normal. Monday was better, but the skipping still cont during quiet sleep.
Our ped ordered an EKG we will get tomorrow. He has had 2 echocardiograms; last one 3 mos ago. He's had 4 EKGs; the last one a month ago at the sleep study. But, I also read that skipped HBs are very rare in babies. At first I thought it was the monitor, but I know how they work inside and out, and was surprised to find it was his pulse, not the machines. No way they could have overlooked a heart condition all this time, that could be causing the apnea??? And, heart conditions are very very rare along with a vascular ring.
So, does anyone here have experience with skipped heartbeats in children? And, if it is concerning? They are going to start thinking that I am a hypochondriac with him. He was napping today, and I got pictures of him being dark grey!! Upper lip, nose, bridge, and slightly on his forehead. His 02 was fine, but he was having the skipping HBs often. When they faded away for a while, his color got better.
Thank you ladies for your responses. It does make sense that it is just caused by the sats, and I am sure it isn't the first time. Just the first time he has been fussy the next day after a low sat like that and we had noticed it. He is better now. The bronch was to confirm the malacia diagnosis, which came back as mild, which I already knew. His EKG did come back normal, so that is good news, although they are notorious for being wrong. If he gets fussy again like that with same symptoms, I am sure the dr would perhaps order a Holter for 24hours. The tech had even said that a Holter is better. He doesn't have bronchomalacia, more good news. The malacia explains the blue spells during activity, but it doesn't explain them during inactivity, which has been more obvious after the 69%, but also happened when he was sick. No sickness whatsoever to explain the latest happening.
Also, I have been charting everything that I think is significant or important. Like him just falling over sideways, like he did during the pneumonia, he did that on Sunday too. May be nothing, but it was very odd and not like clumsiness at all.
We have looked at the neurological part. Two sleep studies do an EEG, and an EEG before that, as well as a CT brain scan (only small white spots that are 70% benign) I am not sure it is anything like that.
More Answers
A.D.
answers from
Kansas City
on
I am not a peds/cardio/pulm specialist by any means...but anytime you have a decreased O2 sat, the heart has to work harder and it can trigger an arrythmia (irregular heartrate/skipped beats). The O2 sat here can be caused by the vascular ring, the apnea, or something else.
It's good that they've picked on the vascular ring...there are kids who are misdiagnosed for many years as being asthmatic and not treated correctly! (I was one of them! I didn't have a ring, but within the last few years just found out about a vascular anomoly I have that narrows my trachea by over 50% with each heartbeat!)
Why do they need to do the bronch? Well, if it explains the condition...you all can relax a bit and ease off on the testing. It's basically a "rule out" mission. If it's negative...then you must keep searching.
Sending healing thoughts.
Hang in there!
Report This
C.M.
answers from
St. Louis
on
I know this may be a longshot but I have seen your many requests and have been somewhat following your mystery illness. Have you considered any of these symptoms to be a neurological disorder? I know that epilepsy can take many forms and know that some people have seizures only in their sleep and presents itself very differently in people and children (it doesn't always present as a twitch, jerk, or convulsion). Is it possible when he de-sats or turns blue it's some type of seizure or other neurological disorder?
I just wanted to toss my idea out there - I know what it's like to have those monitors around. My now 4yr old daughter was born 15 weeks premature at 1lb 3oz, was in the hospital over 4 months, came home on monitors and oxygen, continued having apnea spells for another 2months after coming home and eventually outgrew them.
Do you journal his events of the day - such as more tired than usual, more fussy, # of de-sats that day, number of times and for how long he turns blue a day? Maybe some strange pattern will develop?
I really hope you can determine what is causing this soon because from the sound of your posts, it seems like it's not getting any better and new symptoms are developing.
You are in my thoughts and keep us posted.
Report This
C.M.
answers from
Kansas City
on
Follow your instincts. Mom knows her baby best and don't let ANY doctor tell you it is all in your head. My nephew had problems for years that no doctor could explain. Mostly eating problems, nothing like what you are going through. It turned out to be as simple as enlarged tonsils and was an easy fix. They just had to find a doctor who would think a little outside the box and who could put two and two together. The more you can show the doctors the more likely you are to get a good diagnosis so keep documenting everything. The doctors can't tell you it is all in your head if you have proof. Don't give up! You never know when that miracle is going to come and all your prayers will be answered.
Report This
B.C.
answers from
Joplin
on
F., my oldest son who is 13 now was born with a heart beat that would skip, my Dr was pretty laid back about it and we did find out that his dad had also had the condition when he was a baby. Both out grew it I have a strapping healthy 13 year old son with no heart condition, and his biological father is healthy as a horse too, so hopefully he will out grow it.
It sounds like your situation is a lot more complicated, but never worry about being concerned ( it comes with the territory)
