Feb 26, 2011

Long Saturday

Saturday.  Happy to have Nurse Dana back again today.

Baby is having a lot of .. uh, er ... diaper changes let's say.  About 1 blow out an hour.  Poor little guy. 

Combing his hair ... gotta look good for all his fans
Dr. Cuenca (GI) jut came in at 3pm and said if his c-diff continues at the rate it's been going, we will discontinue pedialyte via jtube and go back to IV fluids only.  Try to give him stomach rest.  Problem with that is ... he has no IV in right now and they don't see any usable veins.  IV team is gone for the weekend.  AND it keeps us here "2-3 more days".  Yikes.  But if it is resolving, we can continue as is and check day by day. 

She knows we're tired of being here.  Before I could even ask, she said that hopefully this jtube will stay in place.  But if not, the next step would be to do an antiretching surgery.  I have been trying to research that and the only thing I can find is the nissen fundoplication (which he has already had).  But we'll cross that bridge only if we have to anyway.  Hoping this jtube stays in place this time.  (If not, I know the early signs now and the steps to do/avoid.)  But it was good to know they are already thinking next step if this doesn't work. 

Dana said the Pulmonologist is not coming to see us today and I was like "Oh no, I have a question for him."  Manny is going down for another chest xray and if that comes back bad, obviously we'll continue as is.  BUT if it comes back fine, I would love to see if we can avoid the 3 per night (every 3-4 hours) breathing treatments.  He didn't think it was pneumonia to begin with.  I would like to go back to the twice a day treatments only like we do at home.  (I think he'll agree with me.)  She is paging him to see if he'll write up those orders so when the results come in, we won't have to call him late evening. 

So as you can see, I'm trying to avoid some of that nonsense in the middle of the night. 

4 IV attempts and finally got one ... in his THUMB.  That's right.  That was the only vein they could find.

Xray showed improvement in the lungs so YES on holding all breathing treatments during the night. 

Funny thing is that Manny was so talkative the second we left the room.  And we ran into MORE people who knew us.  Ironically, we had to go to the ER to get the IV.  And more ironically, it was the SAME room (Peds 9) that we were in on Wednesday for 7 hours before we got fluids.  And even more strange was that they had the names of the docs, tech and nurse on this board with the date.  Wouldn't you know it still has the info from Wednesday on it.  It's like a time vault in there. 

And then the triage tech was there and was the one helping "hold" for the IV.  Then he drove us back up in the wheelchair.  When the nurse from up here said, "Thanks" he apparently said something about doing anything for us since we were his favorite family or something like that.  (For the record, the problems we experienced in the ER were LONG after his job was over.) 

Strange that we're getting "famous" around here. 

Before we came back to the room, friends Bob and Ann brought me drinks and dinner.  Aaaaahhh.  Like heaven.  They also stayed and prayed over Manny. 

Then the kids and Dan showed up.  Man are they WIRED.  But it sure perked the baby up to have visitors again. 

They are pretending to be apes picking bugs off each other!

The night tech and night nurse also remembered us from last May.  Apparently we made a lasting impression.  We hadn't seen any of them since then ... but they all remember us with fondness.  And there is a certain amount of respect too. 

The overnight Doc came in and we discussed our options.  He is still having diarrhea but it's slowing down now that he's on the pedialyte for 16 hours but he's still having some.  The GI wrote vague orders about when to stop the pedialyte and go on stomach rest and start the IV.  So the Doc and I decided that 1-2 more episodes and we will start the IV but hold off until then.  She was leaning towards doing it sooner until she discovered the IV was in the Thumb (something she's never heard of either).  We decided on this as a compromise. 

The gang just left and Manny's watching Elmo on TV.  He's certainly chilled out from last night.  Hoping he has a much better night than last night. 

Thanks for all the continued messages, support and prayers.  I can feel them. 

Today I just ran out of "fight".  I need renewed vigor and strength. 


  1. {Today I just ran out of "fight". I need renewed vigor and strength.}

    You do not have, because you do not ask ...therefore, we are asking, Lord, for "renewed vigor and strength". I pray that she would "run and not grow weary". I pray that the joy of the Lord would be her strength. Thank you that You have sustained her through this trial. Thank you that You will make her path through Manny's care straight.

    Love you, kiddo!!

    PS Look at Manny HOLD and use that COMB!! Wow.

  2. Hi, i just came across your blog and am praying for you and your beautiful children. Manny is a beautiful boy .
    I hope you get some sleep tonight. I was wondering if you could also direct Linnea who posts on your blog to this message? I also have a Trisomy 8 child; he is 8 now, we are lucky that he is thriving. The doctor who told her that trisomy 8 children don't live to be adults respectfully is completely wrong; there is a leukemia risk, but otherwise unless there are major heart problems Trisomy 8 kids have normal life spans. (The doctor was probably confusing Trisomy 8 with Trisomy 18).There is a place called Unique on the web that gives the most up to date info on kids with extremely rare chromosome disorders.They will send a packet out for free on your childs' chromosome disorder if you contact them.

    My son is doing great, and I would like to give her hope.I do know though that he has milder trisomy 8 symptoms than many.( Though he is trisomy 8 mosiac with 80% trisomy cells.)
    Some things I had wish I had known to watch for; despite people saying most Trisomy 8 kids are mentally retarded, he is not, though he has agenesis of the corpus collosum...But he might appear so because he had major speech problems( speech apraxia, where his expressive speech is much worse thn his understanding). And he processes info slowly. However we taught him sign language when young , (and he tested at the school for the deaf as having above average IQ..)Just wanted to let you know if you think Noah is smarter than he appears, he probably is.At 8 my son now speaks probably more like a 6 year old than an 8 year old.He had reflux as a baby and swallowing problems but could always eat orally .He routinely vomited in the morning after getting up maybe two or three days out of the week for many years. For him, putting pillows under the top the bed so he slept more upright, and taking probiotic supplements to help his bowel flora had a better effect than Zantac.At 8, he rarely vomits now,(maybe a couple of times a month)also a bland breakfast later in the morning helped a lot too.
    Beth, I hope you don't mind me posting this , particularly when you are having such a challenging time right now; I just hated to think of someone telling Linnea her son had a death sentance when he did not.
    Thinking of you and your little one,Mimi

  3. Praying for Manny.

    Lord, please heal Manny completely. We know you can and we trust this is all for some purpose Lord. Let him not be in any pain. Give the family strength. Let the other children not be phased by what is going on. Strengthen the bond between husband and wife as they spend this time apart staying with Manny and one staying with the other kids. Thank you for Beth and for Manny Lord and their family. Give the doctors wisdom to do what is right and best.Thank you for all you have done and will do in Manny's life. In Jesus name we pray these things Amen.

    Be blessed and hang in friend and that you for letting me know about the comment and thank you to the above poster for giving our family hope and insight. If you want to contact me you can via my blog or email ashleelinnea at gmail dot com