Feb 12, 2011

The nights turn into days

Manny had enough naps yesterday that by the time it was bedtime (for me), he still wasn't ready.  I laid quietly on the bed while he was playing with toys in the crib.  Finally about 11:30pm he conked out. 

12:10 he desatted. Quickly.  70's.  I was told (by the nurse) to reposition, stir him awake, etc.  Then after 15 minutes of that I can call her and we'll put 02 on.  So I dutifully obeyed.  One of the things she was going to try was to call the Respiratory Therapy team and get them to do a treatment, etc.  So at 15 minutes of doing this, the RT actually showed up on her regular rounds.  Great I thought.  One step down. 

She did all her treatments.  Left the room.  2 minutes later he's beeping again.  So I call the nurse and tell her what is going on.  She turns on all the lights and suctions him really well.  I ask her what she wanted me to try before I called her again.  She said 5 minutes of desatting.  She left.  2 minutes later, he's desatting.  I dutifully waited my 5 minutes and rang her.  20 minutes later, she showed up (apologetic that it took so long but that their Tech's mother had JUST died ... I could hear the wailig in the hall).  She tried a few more things.  Then eventually was convinced enough that he could have the O2. 

By the time he got it, it was 1:31am.  So only about 1 1/2 hours of stuff before he got what was on his orders.  Today, the pulmonologist will likely show up.  I will tell my tale and ask if that is what he was wanting for Manny and if not could he write up more specific orders.  Oh, and before she had even turned it on, she was talking about weaning him from it.  (Also not part of the pulmonologist's plan for him).  So we clearly have some "tweaking" to do. 

So I settle in, not having been asleep yet.  About 15 minutes later, he is desatting again.  And that is while one 1 liter of 02 (typical for him is .5)  Eventually it settles down and I fall asleep. 

Through the night, we had so many visitors who all had questions for me.  And usually Manny can sleep through all the procedures but not last night.  He was greatly disturbed the whole time.  He was begging, "All done" over and over.  And then he would say, "Bye" over and over.  He would do that until they left the room.  The last intruder left at 5:45. 

7am his alarms are sounding again. It's alternating between desatting alarms (still on 02) and high heart rate.  He's still sleeping.  He's doing some retching.  I feel him and he's burning up.  I notice his chest is breathing in a labored, uncoordinated way.  At about 7:30 I go out and tell the nurse at the nurse's station what is going on.  I don't even know who our nurse will be as shift change just happened.  But she comes in. 

By now, his heart rate is about 215 and he's sleeping.  She notifies the doctor.  My sleepy brain is trying to make sense of all of this.  Due to the retching (mild) I ask if we can hold the feeds and we do. 

Eventually, the tech comes in and we find out just how high his fever is.  2 hours before, his temp was low.  Now it's 104.1.  Blood pressure is good though.  Respiratory rate very high.  They now believe that this whole heart thing this morning has been due to the fever only and nothing to do with the retching.  (I have doubts it's all about that since it's the reason we're here but whatever.)  I just wonder how long can a heart sustain over 210. 

A few minutes later, the new Respiratory Therapist comes in for her rounds and I think Great, maybe this will help clear him up.  While she is doing that, the nurse comes in with a second nurse and they need to do another blood draw.  The IV team is not in today.  So ... they are on their own.  They hunt.  I pray.  Meanwhile, Manny is crying the whole time and again saying, "All done. Bye".  Someone stupidly comments that he must not be objecting tooo hard since he is not moving and flailing around or trying to resist.  And I can't believe I'm having to explain to 3 medial personnel that he CANNOT move.  That this is his BEST objecting he can do.  For him it was the equivalent to a full out flailing session where other kids might need to be restrained.  And they were dismissing it. 

By the grace of God alone, the other nurse got the blood on the first stick!  Got what she needed and was outta there.  They send it off for blood cultures when a fever gets that high.  They give him Tylenol. 

They leave.  Respiratory Therapist leaves.  Baby stops crying.  Falls back to sleep immediately.  He looks utterly exhausted. 

Nurse comes back in and starts the feeds back up.  Heart rate as I type this is 163 so it's coming down.  And his pulse ox is 94 (with 02) so we're hanging in there. 

I have a feeling ... this is going to be a looooooooooong day. 


  1. I will pray, Beth. It does seem that one hand doesn't know what the other hand is doing. And on top of that, so many times, people are just doing things by the book...as in when x happens, you do y. Without thinking of each situation as different from another.

    I have a diabetic son who was in the hospital for surgery and they tried to stop him from using his INSULIN PUMP because that is "self-medicating" and they need to be in charge of every medication he takes. The surgeon was well aware of his diabetes and of course didn't expect him to go off his pump. He was very frustrated that the nurses didn't know to let him be.

    All of that to say, I just think many times they are "following a set procedure" instead of individualizing patient care. I'll pray for the right person to be Manny's advocate on the staff.

  2. Beth, I am so sorry that this is such a battle for your precious boy. I pray the Lord will give you the strength and rest you need.
    Ps. 121 Your help comes from the Lord, the maker of Heaven and Earth!

  3. Beth, REMEMBER, YOU do not need there permission to stop a feed if you think necessary. YOU are his mother. Get hubby to bring you pedialyte and try that at a feeding if need be, it MIGHT help. IF he still is retching, CALL YOUR DOCTOR on the hospital phone, let me clue you when you call a doctor and they are awaken in middle of night cuz nurse not doing what needs doing THINGS CHANGE! LOL you will become known as THAT ROOM! LOL anyway call and ask for iv fluids so he does not dehydrate when feeds need to be held. I would also demand they show me how to set the oxygen up. waiting 20 minutes when you baby needs oxygen is nuts and a horrific experience. It should be in his room ready to go at a moments notice.

    PRAYING and sending big hugs for you and much better nursing staff today!


  4. Dear Beth,
    My heart goes out to you and your sweet Manny. I will Pray...

    <3 Heidi Estes

  5. Oh Beth, him saying "All Done- Bye" just breaks my heart, I can only imagine how it makes you feel :( So sorry you all had a rough night. The nighttime nurses can be the worst! Still praying for Manny and you all.