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kadiera
04-13-2009, 08:39 AM
We were home 11 days. :(

Saturday morning Alexander had one of his infamous "I'm pooping, so I'm going to clamp down and turn blue" episodes. Nothing new there, other than it taking longer than normal to get his sats back up, and his heart rate stayed about 20 points higher than normal, along with considerably worse-than-normal retractions when breathing.

After exhausting all our tricks (including bagging and replacing the trach) we called the pediatrician, who sent us to Children's Hospital (downtown Detroit) to the ER. Alexander's vent clinic appointments are set up there anyway, so it made sense to go there even though they've never seen him before.

Rather than a quick check and sendng us home, Alexander is still there today in the PICU, laughing and flirting with the nurses (his numbers were all normal again yesterday). Today he's being seen by the pulmo who he'll be seeing for the vent, their cardiology/pulmonary hypertension team, and a gastro.

The suspicion is that his cyanotic episodes may be pulmonary hypertension crisis in miniature, which most of the time resolves itself within minutes.

The gastro comes into play because the first 24 hours, no one would listen to us about Alexander's killer gag reflex, so he vomited with every feeding. They want to check for reflux and maybe do some other things, "just in case." They didn't do a Nissen at the time he got his g-tube because it wasn't about reflux or feeding issues, it was because he was gagging on the NG tubes and they were severely limiting his eating by mouth due to his respiratory/cardiac status.

*sigh*

So much for being able to let things try to be normal at home.

JWorthington
04-13-2009, 08:50 AM
Oh no! Hope it's a short stay and you get to go home with a plan in place:hug:

kirafaesmom
04-13-2009, 10:58 AM
Well nuts. I hope you get some answers and can get back home soon.

suzanne2545
04-13-2009, 11:59 AM
Well, that is a bummer. At least you are getting an early introduction to the vent team! And a thorough check out. There are several people on here whose kids had vagal responses to pooping when they were tiny. I hope it is a minor thing. We are still perplexed by Parker's mystery cyanotic episodes.

Kira
04-13-2009, 12:52 PM
That sounds so frustrating. I hope things get easier for you!

My little figther
04-13-2009, 01:12 PM
Really frustrating - you met the team a little earlier than expected but hopefully you will be back home again befor you know it
Michelle

kadiera
04-13-2009, 01:22 PM
There are several people on here whose kids had vagal responses to pooping when they were tiny. I hope it is a minor thing. We are still perplexed by Parker's mystery cyanotic episodes.

I'd been reading your discussion on those with interest, and that's part of what prompted me to call the dr this weekend. Some of Alexander's really bad episodes are more along the lines of what you're describing. He goes completely rigid - as in, I've picked him up and had him not change posture at all, and it's made me wonder about other possible issues. The biggest reason I wasn't terribly concerned before was that no one in the NICU was concerned, and Alexander's usual stress response is to take a 10-15 minute nap, so the fact that he is often "out" for a bit after an episode didn't bother me until this weekend, when his normal heart rate and breathing didn't return when he fell asleep.

kshell
04-13-2009, 02:28 PM
I'm not sure what Alexander's background is, but Natalie had major clamping down with pooping when she was smaller. Clamping down is associated with pulmonary hypertension (not always). She has since outgrown these spells. If it is pph then it is best to get treated for it sooner than later. Hope you get home quick.
Karen

suzanne2545
04-13-2009, 02:55 PM
I'd been reading your discussion on those with interest, and that's part of what prompted me to call the dr this weekend. Some of Alexander's really bad episodes are more along the lines of what you're describing. He goes completely rigid - as in, I've picked him up and had him not change posture at all, and it's made me wonder about other possible issues. The biggest reason I wasn't terribly concerned before was that no one in the NICU was concerned, and Alexander's usual stress response is to take a 10-15 minute nap, so the fact that he is often "out" for a bit after an episode didn't bother me until this weekend, when his normal heart rate and breathing didn't return when he fell asleep.

I would love to compare notes after you see pulmonology. And get settled, of course. We are in Grand Blanc. We've not done anything with Detroit Children's but we know it is there for us, if necessary.

kadiera
04-13-2009, 04:31 PM
You know, the funny thing is that right before we came home, his cardiologist did an echo and said his pressures were *normal* - the first time since...well, since forever, because he was being well ventilated and was on viagra to help with the pressures.

And they're making a *huge* deal out of his spitting up/vomiting. Which is worse now than it's been in months, and since we'd gotten it down to once or twice a day, and mostly small-to-moderate amounts, and since we know it's largely trach-position and secretion dependent, I can only assume that something they're doing here is setting him off, and since he's having big-volume vomiting here, he's desatting when it happens, which is why they're freaking out.

I'm *really* getting irritable about this.

Also, we're in one of only 2 double rooms in PICU here, and when I arrived after work today we'd gotten a roommate - a teenager and stuff all over the only counter in the whole room, right next to the sink. We've been told that Alexander isn't sick enough to be here; he could be in the step-down unit....but they aren't planning to move him until he's seen everyone he needs to see, which seems odd to me. Why take up a bed here if he could be somewhere else, especially if they're this short on beds?

lynn
04-13-2009, 05:33 PM
Just a thought on another cause for these episodes: Have they been checking his blood gases? When we were first discharged, we landed back in PICU after 10days home. There was frequent episodes of clamping down, and turning blue- we tried the same techniques as you- bagging and replacing trach- It go so bad that we only had good times while being bagged- once back on vent he would just fight it and drop sats. Also we had major vomiting which had never happened in NICU- after being readmitted they discovered that he had metabolic acidosis which was causing the blue episodes and also the vomiting.. When in NICU- if he ever showed any signs of acidosis, they just gave some meds and it was no big deal- but when we were discharged, there were no blood tests and no meds so we had no clue that there was a problem. ----
I dont know how your hosp works, but in ours if kid is on vent- they are in ICU no matter how minor the care they need- I often questioned this because of all of the germs in PICU.(3 kids around us had RSV only seperated from us by a curtain!!)so eventually we got transferred to a semi private room-but.... I (or DH)just had to be there 24/7 for his vent care because they wouldnt be able to watch him..

kshell
04-13-2009, 05:38 PM
Natalie's pressures were always normal on her echo, even before they treated her for pph. The cardiologists are huge on nissen's at CHOP. In fact, they reccomend it for all kids with pph at chop, pukers or not. I'm still not sure how I feel about the nissen, she actually never threw up until AFTER it was done. CHOP is now mostly doing half wraps b/c the issue of dumping syndrome has come up more than they thought now that they are actually looking for it post surgery. I guess the half wrap does not create so many sugar issues.
Karen

alizesmom
04-13-2009, 09:47 PM
:hug: Karen

kharmasmama
04-14-2009, 12:09 AM
Hospitals can be so frustrating - I hope things start going better for you and your little one :hug:

JacobKaden
04-14-2009, 08:29 PM
In Jacob's case, his blue spells were definitely caused by undiagnosed reflux! Once he was put on reflux meds, his blue spells decreased significantly. They did a sleep study of him, with and without reflux meds and the difference was astounding - he had way more desats without the meds.:eek:

Occasionally he will do breath holding, when he is really mad. We usually just have to tickle his feet or blow air on his face & he immediately takes a breath. It sounds like reflux is a definite possibility - good luck figuring it out.:hug: