Admitted

Here I am sitting in a dark IMCU (intermediate care) room in the hospital with Hannah.   She made it 14 months without a hospitalization admittance, which is amazing considering her disease process.

Diagnosis:  Bilateral pneumonia.  Same thing that initially brought her into the hospital last year and ended up being 6 weeks of hell.

It started early yesterday morning.  She woke up at 4:30 am really restless and uncomfortable.  I figured she was just exhausted because she didn’t get much sleep, so when Daddy woke up at 5 am, he took her into the other room to try and get her back to sleep like he normally does.

But she wouldn’t have it.  She was crying (silent but with tears), couldn’t get comfortable, stiffening up like a board when we tried to touch her, and she seemed to be in a lot of pain which is a first for us with her.  At 6 am, we decided to take her to the ER because nothing was working to try and comfort her.

It usually takes us 20 minutes or so to get to Sunrise Children’s Hospital, which one of the two main Children’s hospitals in Vegas.  That is our “regular” hospital.  But we couldn’t drive more than 5 minutes without Hannah hyperventilating and getting herself incredibly worked up, so we instead drove to our local hospital (where I stayed a few months ago).

When we got there, they saw she was in distress and took her to the Peds ER immediately, bypassing triage.  They immediately worked her up and started loading her up with Motrin and Tylenol because her fever wouldn’t break 102.3 even with the meds.   They did x-rays, blood work, and gave us wet washcloths to try and cool her down.

That was a miserable 4 hour wait because Hannah was just so uncomfortable, and we had no answers.

Then the results came back.  Bilateral lower-lobe pneumonia.  They wanted to admit her.

Once we were able to get her upstairs to a room in the IMCU (not serious enough for the PICU, but more serious than the regular peds rooms), they gave her some Versed to mellow her out.  I was SO thankful to get her sedated just so she could rest her body.

The doctor wanted to put her on a CPAP to help her breathe and let her lungs rest.   She fought that thing like crazy!   They then put her on an IV Precedex sedation drip so they could get the machine working and help her out.   She was doing fine on room air downstairs, which we mentioned again to the doctor, but he wanted her lungs to rest.

For about 10 hours she was on the vent and sedated.  It became a challenge to get her enough sedation to rest (because we know Hannah and sedation don’t mix well), but not too much to lower her heart rate to a dangerous level.  So everytime she would start moving and getting agitated, the Precedex went up.  But then her heart rate would drop into the 70s and 80s, which is very low for her.  Then the vent alarms would go off because her respirations were funky.

So then the talk about adding more Versed or adding Fentanyl in addition to the Precedex started.  It was really stressing me out.  But they were able to keep her sedated just enough so we didn’t have to go that far yet, but we were very close.

Then, around 10 pm, the vent alarm would keep going off, claiming she was having sleep apnea and not breathing.  I mean, we are talking about 25 times in an hour!   Amazingly, we had a dedicated respiratory therapist last night who spent the entire time playing with the vent settings.

It turns out that when Hannah was trached last year, they left a large leak (air around the trach tube so she could still get air by mouth, a good thing since she wasn’t trached because of breathing problems) so that it would screw with the vent settings because vents are supposed to control all air pressure.  But with a leak, Hannah can still get air around the vent pressures.

Finally around midnight, the RT took her completely off the vent as a test and just put on a humidified trach collar (which we use at home) with 30% oxygen (room air is 21%).  Hannah’s breathing stabilized almost immediately because she stopped fighting against the vent.

The RT called the doctor, and he agreed to let Hannah stay this way and keep the vent on standby.

Because Hannah was so much more comfortable without the vent, we were able to actually LOWER her Precedex (never gave her more Versed or Fentanyl), and her heart rate, respiration rate, and oxygen saturations have been doing really well since!

They just came in and did blood work and another chest x-ray.   I don’t know how long we will have to stay here.  “For a regular child” (as the doctor said to us earlier this evening), she could have just a “couple of days” admittance.  But with Hannah, it is a “Let’s see how she does” situation.  Daddy and I are hoping no more than 5 or 6 days but we will see.  Last time, a week turned int 6 weeks because of complications.

But now she is stable and doing well.   Thank goodness we kept the trach because having that airway and access to help clean out the gook in her lungs has been critical!   If she didn’t have the trach, she most likely would have had to be intubated again – and we don’t need that hell again!  I asked her night nurse how she is comparing to a “regular kid,” and she says that Hannah really is doing well.

Daddy and I keep going back to last week’s ER visit.  Did they miss something then?  We don’t know.  Doc here says that it likely could have been a virus then that turned into pneumonia over the week.   Her white blood cells were normal a week ago, but they were 11.4 at Cerezyme two days ago and 18.5 in the ER less than a day later so something definitely hit her hard.

She isn’t out of the woods yet, but she is working towards the right direction!