May 24, 2012

Things change around here fast

I must get something off my chest: 
Some people should just NOT be night nurses, techs or therapists.  (I feel better now.)

Yesterday, Manny was still too weak to get out of bed and sit in his wheelchair (trust me, I tried several times).  But he was feeling a bit better (he's getting 5 days of iron iv and also iv antibiotics which are both helping).  I was able to keep him awake all day (like normal for home). And he went to sleep at his regular bedtime. 

Sounds heavenly, huh?  Well, that is until TWO hours later, the medical personnel had to come in his room and they were acting like it was 10 am, not 10 pm. Talking in regular voices, flipping on lights (needless ones) and  talking TO him/interacting playfully.  He grumped at them because he was trying to sleep and then they tried to comfort him and then tried to chide him for being grumpy.  When all he wanted was some S.L.E.E.P.

I was whispering.  I was quietly moving around the room.  (Trying to model the proper behavior.)  But they weren't getting it. 

They would leave and he would shut up.  I thought he was sending a very clear message. 

It only took a few hours before they put oxygen on him.  (I felt he was borderline to needing it earlier in the evening but it wasn't clear cut and then it became clear.)  He slept (semi) peacefully for the rest of the night. 

He was only awake about 20 times ... which yes, is a lot, but much better than most of the nights we've had since being here.  He would actually sleep for stretches of about 30 minutes sometimes.  LOVE that. 

So what's the plan?  Today we have Doc's protege as our doctor.  She will come in later and assess him.  If he sounds fairly clear, I am going to push to see how soon we can go home.  Afterall, right now, they are only doing things that I can do for him at home.  I don't want to take him home and jeopardize his life/safety though either.  And I think today it's not clear cut.  So I have to put our fates in the hand of a person whose judgment isn't always in line with mine. 

Our regular doctor (the one whose judgment I do trust implicitly) is gone for 2 days.  This should be interesting. 

Meanwhile, not sure if I updated you on this or not.  I'll give the summary version here.  OK you know how Manny's iron stores were very, very low?  They gave him a blood transfusion which should help (and it did).  Then they did 2 days of iron in his tummy tube. That did NOT agree with him in any way and we're still dealing with the risidual effects of that.  Then he had 3 days of IV iron.  That helped.  I was actually happy with his hemoglobin levels... highest they have been in forever.  But the hematologist came by yesterday and said she wants them closer to normal.  So she started him on 2 more days of IV iron.  Then we will monitor weekly to ensure his levels remain high. 

To be more specific, his hemoglobin was about 9.6 since his last blood transfusion in mid February.  Then it started to decline mid april.  It hit 8.2 and he started to show signs of distress.  By 8 I knew he needed to get his hiney in the hospital.  By the time we got here, it was 7.3 and several of his labs were in "critical values". 

After his transfusion this time he went back to 9.6 so I thought everyone would be happy.  The hematologist started with the iron and it went to 10.8 and I was thrilled.  Hematologist wants him closer to normal range (for his gender and age, it would be closer to 14!)  Really?  Wow.  Again, I repeat that I am thrilled to have someone looking at the labs besides ME. 

10:15am, Respiratory therapist just came in ... even after his breathing treatments he still sounds "coarse" and "diminished".  Those are code words for "we are not going any where".  :(

And I think I told you that his broviac line has the beginnings of a crack on it.  The nurses are FREAKED OUT about it.  Seriously!  They don't want to touch his line.  They keep checking it to see if it's burst or not.  Me?  I'm fine with the whole thing.  I'm careful.  I'm prepared.  In an emergency (like the line breaks) then I know what to do.  I'm not thrilled knowing this thing could blow at any time, but it's just another one of those things that Manny likes to do to keep us on our toes. 


9pm FROM HOME!!! 

OK so that's a lot of time in between and a huge change so I'll try to update what happened. 

Last night I told the night nurse that if Manny did well that I would see if we could be discharged today.  Guess the night nurse told the day nurse.  Then to my shock, Doc was actually on call afterall today.  The day nurse told him that I was ready to go.  So when he walked in, he said, "A little birdie tells me you're ready to go home." 

I told him that if he was the same or better, that I felt I could handle this illness at home.  If it was worse, I would happily stay.  But I left it up to his judgment call.  He listened to Manny and said no better, no worse.  He said that since I am who I am and I have all the same medicines and machines at home (including oxygen) that I could go home!  I actually mostly didn't believe it.  Afterall, if I took Manny into the doctor today, she would likely admit us.  So clearly, he is still very sick.  And of course I know the warning signs to take him back and would. 

They got discharge papers and sent us home! 

The next few hours were a whirlwind of activity.  Driving home.  Getting lunch (FOOD is a good thing!!) 

Then my hospital world and my home world collide ... HARD.  It's a hard transition.  The kids at home are needy of their mother who has been absent for more than a week.  Luke has still been sick and tomorrow will be his first day back to school since I left.  Kaley is still at 103 plus fevers.  (She has the same thing Manny has so no way for him to get it from her by the way.)  House is messy (though sister came and helped out last night, THANKS).  Phone calls to make, mail to deal with, medicines to pick up, dinner, homework, laundry ... you know ... LIFE. 

And on top of it, a baby with mild pneumonia.  And me NOT getting the flu.  (Keep repeating that!) 

Then bedtime ... I had 6 machines to set up for Manny.  Many of which I haven't used in months.  Why?  Because this is his first respiratory thing in months.  So a nebulizer, vaporizer, oxygen concentrator, pulse ox, his TPN, etc etc.  Our room has so many machines in it that Dan decided to sleep in another room tonight. 

So at 9pm, all the kids are sleeping but Manny.  I am about to crash and I realized that I had so many of you left hanging that I owed it to you to let you know the day that turned on a dime. 

He will be on IV antibiotics for the next 8 days.  The home health company sent me the antibiotics tonight and I am going to just hook them up to his broviac daily.  Cool. 

Finally, about 6 pm, got a call from Boston Motility Clinic.  I am in SHOCK.  They said they did want to expedite his case.  They are currently making appointments for December.  But they wanted to see if we could be there June 25?  Uh ... YES YES YES. 

So we will be in Boston for Manny's 3rd birthday (that's June 26... not exactly my plans for his day but plans can be changed).  They currently have us being admitted on June 25 and being discharged on June 27 (if all goes according to plan). 

What is this appointment about?  There are allegedly only 3 clinics in the country that are specialized enough to try to figure out what is going on with Manny's gut and his inability to eat.  IF we even have the POSSIBILITY of getting off TPN, it's worth the shot!!  We must try. 

So there (in a nutshell) is my day. 

Things change around here FAST!


  1. YAY for home where you can all be together :) yay for teams to help you. YAY for appt in boston! :) I agree on the statement at the top!!!!! Thanks for sharing all this with us.

  2. Becky Browder NeustadtMay 24, 2012 at 10:10 PM

    Bless you for the update. Get in that bed YOUR BED as soon as you can and get as much sleep as your life will allow.
    Sending love and strength to you! Yay for Boston! Happy Birthday to Manny! xoxoxoxo

  3. yay!!! so glad you are home. Tell Zoe Happy Birthday from her wife. :D

  4. WOW, I will be praying hard for him to stay healthy enough to go to that appointment on June 25!!