News

You know I usually follow the rule..."no news is good news"...well in this case, I didn't follow that rule.  It was a rough day Monday followed by an even rougher night.  I have been too overwhelmed to post, but I will try to catch up now.  Elie actually isn't in that bad of shape...it has just been emotional for me.

Monday morning after they had a chance to read the EEG, the neurologist came by.  She said that the night time desats WERE NOT seizures and the vertical nystagmis WERE NOT seizures...O-KAY?!?!?!  And yet she suggested adding more seizure meds.  If they are not seizures, then what are they?  Why would we add seizure meds if they are not seizures?  Why would the onfi (the seizure med she has already been taking that has helped her have less of these desats) help if they are not seizures?

She suggested that it may be pressure in her brain and that we may need talk to neurosurgery.  The team was not convinced, so they did not order it.

ENT took her down to their clinic and suctioned out her ears, cultured the left one and looked at her sinus' and cultured it as well.  The small amount of drainage from the sinus' was clear and there was not a lot of it.  So they are now unclear if she actually has a sinus infection and think it may just be some stuff left over from her cold last week.  They stopped the augmentin.  But still wanted to do the afrin and some saline spray also (both in her nose).  The ears, they wanted to continue ciprodex eardrops for 7 days.

It jus all seemed like very conflicting information.  Looking back I can't even remember why it was such a rough day for me...but it was.

Monday night I went home to have Family Night and decorate the tree and then afterwards order all of our Christmas stuff from Amazon.

Before I left I explained (like I always do) to the nurse about her desats and that they are normal for her.  Yes they are scary, yes I wish they wouldn't happen, but yes, they do.  You just have to wait a few minutes and she will start breathing again.

In the middle of online shopping we got a phone call from the hopsital saying they were having an emergency with Ellie.  She had desatted into the 20's and were bagging her (forcing breaths of air into her lungs) and were going to intubate her (put a breathing tube in her mouth) and then move her to ICU.

Jason and I arranged for immediate childcare at home and drove together down to the hospital as quickly as we could.

When we got here she was intubated in ICU.  She was starting to wake up a bit from the paralytics and moving her tongue trying to get the breathing tube out.

We manged to track down someone who was actually there when the event happened.  The respiratory therapist was in the room adjusting her mask when the desat started.  She immediately pushed the code blue button (she did not give her  few minutes like we usually do) and started bagging.  This would be what you would do normally, but usually if I am there in the room I can get them to hold off and wait it out.  Because I wasn't there, it sounds like things escalated quickly.  Her sats came up quickly with the bagging, but then they would pause bagging to see if she would start breathing on her own and she wouldn't, so that's when they decided they needed to intubate.

Well, normally we handle things differently.  We do not bag her (although we may start since it seems to bring her sats up more quickly).  We leave the bi-pap on and wait it out and the bipap is still on her once the episode is done.  We know that she "rides" the bi-pap, meaning...she puts forth no effort to breathe once the bi-pap is on.  She does not initiate breaths and she does not breathe more than the machine delivers to her.  That is why she has a "back-up rate". The machine gives her 22 breaths per minute no matter what.

So when they stopped bagging and expected her to breath on her own...she is not going to do it.  She has had a sleeping pill and she is zonked, it is her time to take a break and sleep...not breathe.

So really...as scary as the phone call and drive down here were...I think it was one of her normal desats and they reacted differently than we do at home.  Maybe we should install a code blue button at home...that would spice things up!  But then again we would be pushing it 1-3 times per night.

The desats are worse in the winter, worse when she is sick, and she almost always has a desat between 1 and 3 AM.

Jason and I spent the remaining few hours of the night in her ICU room trying to sleep.

The next day (Tuesday) the ICU Dr.'s mentioned multiple times that she may need a trach (hole in neck that we would hook up to ventilator at night) or that her brain cannot keep up with her body, now that she is getting older and bigger.

To adresss the trach...we have been there, done that.  It is hard.  Granted this time we wouldn't be lugging a ventilator around with us, but a trach is really hard.  It is one of the hardest things we have had to do with Ellie.  We would really really prefer not to go there.  We will if we have to...but do we really have to?  Let's explore other options.

As far as her brain not keeping up...I hate it when Dr.'s say this.  When ever they can't figure something out, this is what they say.  We have been hearing this since she was 6 months old.  We get it.  We know she doesn't have a lot of brain matter.  We know at some point this may be the case, but you don't give up and say "go home and die".  You try to find answers and help Ellie for as long as you can.

I was under the impression that we were near the top of her bi-pap settings already and if we went up any more we would have to go to a trach.  I asked pulmonology if this were the case and he said no.  She is at 14/7 and he said you can go up to 20ish.  So we still have a ways to go if we need to.  That sounds encouraging, it at least sounds like an option.  Pulmonology thought that it sounded like obstructive sleep apnea.  We already know that she has obstructive (something blocking airway...tongue, throat collapsing, etc...) and central (brain forgets to breathe) sleep apnea.  That is why she has the bi-pap.

**Side note for myself...I really like her current pulmonologist, but if I ever have to switch I liked the on call one we saw too...Dr. Ochida (something like that).

Several years ago when the desats started I went to her pediatrician, pulmonology and neurology about the problem.  Neurology did a 3 day EEG and said that some of the deats were definitely seizures and some he couldn't tell.  That is wehen we started the onfi and it did help.

Several years ago pulmonology acted like...well that just isn't possible (the desats).  Well, maybe so, but that is what is happening.  We did a sleep study and she felt like her settings were fine where they were.  I asked if we could raise the settings just for fun to see if it would help with the desats.  She said sure.  We raised them one step.  It did not seem to help, so we went back down.  Maybe we should have gone up even more.

Yesterday (Tues) they were able to extubate (take the breathing tube out).  She had no problems.

They also started another EEG yesterday.

Last night she had no desat episodes.  She did have several times that her respirations dropped from 22 (the number of breaths the bipap gives her) to 7-9 breaths per minutes.  But her oxygen stayed high.  Since being in the hospital, I have noticed that when the machine drops to 0 breaths per minute, that is followed by her desat episodes.  Our machine at home does not monitor breaths per minute, only heartrate and oxygen.

Tonight (Wed) they are going to do an overnight sleep study with full EEG.  They will also be trying to see if they can adjust her bipap setting so she is not desatting anymore.  I hope they are successful, we would all get a much better nights sleep and they might even be able to stop pushing the code blue button while she is inpatient...wouldn't that be AWESOME!

She is really doing quite well.  She was awake until 4 PM yesterday (Tues) and has been awake so far today.