Feb 9, 2011

Long update on the current hospitalization

(Written Tuesday)  Tired Mamas do not write riveting blogs.  I know that's not a revelation, just stating the obvious.  So why am I exhausted?

No, he's not sleepy ... he's miserable!

Manny has been screaming bloody murder every 2-30 minutes every night for the past 3 nights.  Sunday night was the only exception to that.

Weeks ago he had the bleeding gtube episode and we thought that was the end.  But no.  No relief from the screaming in pain.

No real clues about what was going on.  He was retching ... progressively more often and more severe.  Sunday morning he woke with a fever ... a new clue.  Took him to the urgent care and they diagnosed him with double ear infection.  Antibiotics.  Ear numbing drops.  Extra pain meds.  He slept well that night and we thought we had it under control.

Monday he retched.  Often and hard.  But we still had the hopes that he was on the mend.

Monday night was HORRIBLE again.  He was in constant pain.  Screaming.  He finally collapsed from 4am until 7am and only woke 2 times during that.

Today he has been miserable.  Choking.  Retching.  And then he did something new.  He threw up.  He has a nissen fundoplication ... which basically prevents such things (as to not aspirate).  He's never even burped before, much less thrown up.

Off to the doctor.  Unfortunately, our pediatrician was out today (death in the family).  And the stand in knows nothing of Manny, his case, us, etc.  He's a very experienced pediatrician and he said Manny had him stumped about what to do for him.  I told him he wasn't the first one to be stumped by him!

He suggested we get into see the GI.  I have an appointment for Monday, wondering if we need to be seen sooner than that.  I have no clue if this is a huge deal or no big deal.

2 hours after the first picture, 3 hours off feeds.  Perking up!

I asked the doc what the criteria should be for taking Manny into the ER during his retching episodes since tired Mamas don't make good, rational decisions in the middle of the night either.  He said respiratory rate over 45.  Pulse ox under 85.  Heart rate over 150.

He's not doing the first two.  But the last one is a problem.  His resting heart rate is usually around 120 (high for his age but normal for him).  And today while resting and breathing fine, he's in that range, slightly elevated.

But he retches and it hits 180 easily.  Hangs up around there for a while too.  Then comes back down when he can breathe again. But it does come back down.  I have a call into the pediatrician's fill in to get clarification about those numbers.


Part two ... written from the hospital.  (Written Wednesday)

So Tuesday night after I wrote that, his heart rate kept climbing and it was time to go to the ER.  He hit mild respiratory distress.  They took him straight back ... skipped the waiting room, skipped triage. 

By the end of the night, they ruled out flu, RSV, strep, cardiac issues, etc.  His heart rate was in the 170's but it was sinus (normal) rhythm.  The ER doc was convinced it was GI related since it is triggered by his retching. 

Over the past 3 weeks, there has only been ONE night (Sunday night) where he wasn't screaming in pain every 2-30 minutes. (I'm beyond exhausted!)  Last night was no exception.  His heart was 110's through the night (he was off feeds). And then this morning, when it was time to feed him, called the GI to see what to do. After being completely blown off, I called my Primary (LOVE HER). She technically is still out of the office on family leave (death in the family). But she got involved because we were getting no where.

After getting very upset with the GI for doing nothing, she gave him the ultimatum of seeing him today or admitting him into the hospital.

So we're at the hospital. We've just finished with the initial blood and urine tests, and all the basic stuff. He's hooked up to IV fluids (which I'm happy about since he was getting dehydrated). And he's on a heart machine and a sleep apnea machine.

Since he's not on food, he's not retching. So his heart rate is staying fairly low. (145 as I type this). I'm worried he will get weak (he did the last time they took him off feeds and put him on fluids only). But he's very happy. It's he feeds that send him into misery. Even the nurse noticed the HUGE difference from when he was on feeds when he got here compared to stopping them. He's awake, alert, present, interacting, not sweating, etc.

No doctor has seen us and we've been here for HOURS and it's now bedtime. Someone is ordering these
things for him, but not someone who has seen him! That's frustrating to me. 

Anyway, at this rate, I have no clue what's going to happen. They can't see him retching if they take him off food. Maybe that's their plan ... to make him "better" and send him home. Who knows?!?

I will update when we know anything.  Obviously nothing tonight.  Just praying he actually SLEEPS! 
Hugs to you all, Beth


  1. I agree, it sounds like GI, but I am no dr.Allergies (gut allergies)? Gut fungus/bacteria? Ulcers? Would continuous feeds help versus larger bolus feeds?

    AGHHH. I wish I could help, Bethie. I will be praying, goes without saying. ((hugs)) Love you, sweetie ...

  2. You are living my life! My son doesnt eat and thrives eats and vomits and is awful. We put him on neocate formula. They think it could be a soy milk protein allergy. He is having an endoscopy tomorrow and it should tell us something. We are in the hospital a lot. Last stay was christmas day til new years eve. That included an emergency surgery and we almost lost him had the er dr had her way. I will pray for you and manny. I may not not exactly what you are going thru but unfortunately I can relate in some way. My son is adopted, has trisomy 8, sub mucous cleft, reflux and other issues. I hope this is not a long stay.

    Heal Manny. We know you can. And where 2 or more are gathered in Your name there you are. Give Manny rest and peace, give his mama strength and peace and give his doctors wisdom. I pray that their stay would be comfortable. I pray that manny would be healed immediately on earth Lord. Thank you for his life, thank you for his family. Thank you for his drs. Be with his brothers and sisters and allow them to have peace as well. Dont let them be fearful. In Your name we pray. Amen.

    Be blessed