Dec 27, 2012

Discharged, now what

So we were discharged.  2 days in the hospital.  His labs weren’t the greatest but we were able to go home anyway.  We have no clue what caused the fever but it went away so we’re good.  

While there, the secondary GI came in and gave her opinion about how we should proceed with trialing Manny’s feeds.  I was not thrilled.  It caught me completely off guard in fact.  She was seconding the idea of doing a fairly radical and major surgery.  She wanted me to consult with a surgeon I don’t know, not our usual one.   That made me feel very anxious.  (Understatement.) 
Photo: Look at my big boy! He figured out how to make the chair bounce!
Learning how to bounce the chair!
I wrote a prayer request (vague one) on Facebook and it was answered in a couple of ways.  First, a friend called me and offered a piece of the puzzle that will serve as my plan as I go forward.  Secondly, the next day, the GI came in and said she had reconsidered and was recommending a more conservative approach first, only heading to surgery if the other plans failed.  See?  God is good. 

In the meantime, however, I asked Doc what he would do in my “impossible” situation.  See, if I did the surgery and it fails, I would feel horrible knowing I went against my better judgment.  But if I don’t do it, and he goes further into liver failure, I will always wonder “what if”.  He said he would think about it.  The next day, he came in and said that if it were his son, he wouldn’t be able to do the surgery knowing the risk is so high and the likelihood of a good outcome so low.  Not worth the risk. 

Meanwhile, remember the continuing saga of the low red blood cells?  We did an iron test and they all came back horribly low.  He needed iron.  So while there, we got two days of IV iron.  It’s not enough but it’s a start. 

Finally, while there, the GI wanted to start Manny back on 5 cc’s of fluid continually. That will be 120ccs per day.  In real people words, that’s 4 ounces, given a drip at a time.  It’s not much.  But it’s a start. 

So following is the sequence of events describing how that went:

1)      December 24-25 to being fed:  he had no cough, no respiratory symptoms.  His heart rate was around 100 and respiratory rate about 25.  No respiratory distress of any type.  Sats were 98 and up.  No output from his Gtube. 

2)      December 25 3pm: Started feeds into his jport, (5 cc/hour continual)  he immediately (within 2 hours) started with a wet cough.  You can hear it in his upper lungs.  Heart rate hung more like 130-150.  Respiratory rate 35.  Mild respiratory distress that worsened as we continue the feeds … grunting, flaring, retracting.    He had output from his Gtube that was greater than the imput into the Jtube.  (100 was in and 125 was out.)

3)      By 4pm on December 26 (25 hours into the feeds), we had to stop the feeds.  Then during the night the worst of it happened.  His cough got so bad and his sats dropped.  They would recover back up to high 90’s once he was able to cough well but it dropped into the low 80s and hung there for hours.  Oxygen doesn’t always bring it up as it’s an airway issue.

4)      Our plan had been to give him the night off and restart by morning but now we’re not sure that’s the best choice since his lungs are still junky as I write this at 2pm on the 27th. 

5)      I stopped the feeds prior to feeds backing up into his stomach.  (That’s what normally happens with time.  The output from the gtube was all basically clearish.)  Under these circumstances, it shows what I’ve been saying all along … there are TWO issues.  One is the feeds backing up which could be  potentially “fixed” by a surgical J.  But the other is some outrageous increased secretions that cause him to aspirate. That would NOT be solved by the surgery. 
Photo: At 11 months we were told he would not live to see his first birthday, for sure not his next Christmas. He has had 3 birthdays and 3 Christmases since then. Today he is 3 1/2. Wow
At 11 months we were told he would not live to see his first birthday, for sure not his next Christmas. He has had 3 birthdays and 3 Christmases since then. 12/26 he was 3 1/2. Wow

Where we stand

·         Goal:  I want to do feeds but I want him to be safe.  Not sure how to accomplish both. 

·         How to proceed:  Who decides how fast/slow we go?  What Criteria to use to stop/start feeds? (I know that if I push it, he will end up in the hospital with infiltrates in his lungs.  If I stop them we can stay out of the hospital but aren’t exactly following GI recommendations or helping his liver.)  It’s a fine balance. 

·         So for now, I have decided to give him 24 hours off feeds.  And today at 4pm I will restart feeds.  But instead of formula, I will try water.  See if that triggers the secretion output.  (During the 24 hours off … there has been ZERO output from the Gtube again).  I guess I need to go super systematically.  And if he tolerates it, I will continue this.  If he does not tolerate it, I will stop it. 

·         Second opinion:  wondering if it’s a good thing to get a second opinion about what is going on?  Orlando just opened a motility clinic at Arnold Palmer.  They say they can manage complex cases.  Might be worth a shot. 


12-3pm hooked Farrell bag to his gport and there was 0 output by the end of the 3 hours (while nothing was being fed).
I put a 60 cc syringe to his gport to drain stomach contents ... there was 0 output.
3pm start experiment of 5 ccs/hour of water in j port.
4pm 5 ccs output in Farrell bag, 5 ccs in.
5:30, Manny was retching so the water was stopped. There had been 12 cc's in total and about 25 out in the Farrell bag.
6pm, Manny was continuing to retch so I put a 60 cc syringe to his gport and drained the contents of his stomach. Approximately 15 more ccs there.
Retching stopped.
Experiment over.
Conclusion ... even water triggers a strange reaction.


Bottom line?  He’s fine if I don’t feed him. 

My pediatrician is submitting a referral to Orlando Motility Clinic.  Hopefully by her submitting it, we can get in sooner than if I tried to do it. 

In the meantime, I have also called the pulmonologist to see if we can get a more heavy duty oxygen concentrator.  The one we have now can only go up to 1 liter and he needed more last night.  It’s not a problem if we’re not feeding him, but if we continue to do feeds, we will need all the support at home we can get. 


Me?  I’m exhausted.  Mentally and physically fatigued.  Emotionally this is taking a lot of out me.  Why? Because it’s such gray area.  We’re navigating waters that even the Doctors/Specialists haven’t been down.  We’re all making it up as we go.  And when they make the judgment call, the responsibility for the outcome rests upon them.  But I am the one making these decisions so the responsibility lies with me. 

Like last night in the middle of the night during some of his choking episodes… he’s not breathing well. And I wonder if I should just keep doing what I’m doing? Or go to the ER? Or call 911?  All are decent answers.  No one would fault me for doing any of them.  But they are a judgment call.  And I am the one making them.  At 3 am.  And there’s a lot of terror involved. 

As I talked to my pediatrician about this today at length on the phone, she and I are on the same page.  We all want Manny to have the best life, the highest quality of life he can have for the longest he can have it.  We want him comfortable.  We want him enjoying life.  And we want to enjoy him.  We want to participate in events of life.  We want to spend as little time as possible in those moments of terror.  And based on that, I think it’s pretty clear … we do not need to do the surgery.  We do not need to keep experimenting on this baby.  If someone has a good plan to try, I’m all ears and eager to attempt it.  But I’m not keen on or willing to subject him to more bouts of torturous plans if I can at all avoid them. 

What does that look like?  Beats me.  But that’s the plan. 


Dec 21, 2012

If it's December, we must be in the Hospital

Life.  Over the past few weeks, I have written several blog entries.  I guess I wrote them for therapeutic purposes because I don’t feel I could/should share them.  Some of the topics have included:

Sandy Hook, gun control, Asperger’s and how my son has this disorder.
Then there are the topics of where do we go from here with Manny’s saga of breathing versus eating.
And the topics of general life. 

Suffice to say, I have experienced a lot of emotions and they’re all rolled into one.  At any moment I will be fine and then crying simultaneously. 

Today, Friday December 21, 2012 at 9:30am I was in the blood lab waiting for blood tests for Sam, Kaley and Jacob.  There was a harmless show on when there was a Special Report.  It was a National Moment of Silence.  One week ago at that moment was the Sandy Hook incident.  (You have to understand, I don’t watch the news.  I can’t.  My kids are all too young and vulnerable to hear the news on a regular basis.  It’s all about this murder, that rape, those break ins … if you watch that, you think there are only bad guys in the world.) I had no clue this was scheduled.  I was caught quite off guard. 

A bell rang out and then a picture of one of the 26 people was shown with their name and age.  About 6 seconds later, another was shown.  I didn’t get past the second name before I was about to be in a puddle of my own tears.  I tried not to fall apart in front of the kids.  And then I looked down the row.  They were moved too. 

As a mother, I just cannot comprehend.  I know that my child is sick.  I know live with the possibility of a negative outcome … often.  But these people sent their kids that day to first grade, kissed them and said, “See you later” never imagining the truth:  they wouldn’t. 

Meanwhile, Manny has been healthy!  We have stopped all feeds and life is great again.  No congestion, no desats, no breathing issues.  GREAT! 

Wednesday we had labs drawn.  Thursday we got the results.  They were HORRIBLE.  They were news of an impending issue. 

Specifically, for the past two weeks, his liver enzymes have been basically normal.  About 60-80.  And this week, one is almost 500 and the other almost 700.  Highest EVER. 

What does this mean?  One piece of info is good/great news.  When someone is on TPN longterm, a huge concern is liver damage/failure.  This is demonstrated partly due to elevated liver enzymes.  His were elevated so people assumed it was due to chronic TPN use.  BUT the fact that the past two weeks the numbers went to basically normal??  That PROVES TPN is not the culprit!!  If it were, the numbers would stay high and increase.  So this is great news.  His liver is not permanently damaged.  He is NOT in liver failure.  Yippee. 

But why the jump from 60 to 700 in a week?  Shows his body is fighting something.  He had no other symptoms. 

Thursday night all was fine until 3am and he was hot.  101.4 temp.  By 6am it was 102.8.  I knew right then and there we’d be in the hospital by night.  (sigh)

Meanwhile, remember how he had a blood transfusion a few weeks ago?  His hemoglobin should have gone up to about 11.5 or higher (his pattern).  But this time it hit 10.4 and then right back to 9.5.  We went to the Hematologist last week and discussed the issue.  We determined iron tests should be done.  So along with the other labs, we did those this Wednesday. 

Those results showed on Thursday that he is at very very low levels of iron.  He will need IV infusions. 

So tonight as I write this … we’re in the hospital again.  He is playing in the wheelchair.  He’s quite content here.  He would rather be home of course but we make it pleasant and he’s happy.  Me?  I’m having a hard time with this admission.  Why?  We had plans.  We were going to have a formal dinner at our house (decorations partly put up, food bought, etc.).  Today was the kids’ last day of school before winter break and we had plans.  Fun things planned.  It’s so very very hard to have to tell them that all those plans are on hold and I’m headed back to the hospital.  They handle it well considering … but they have all sacrificed so much.  They have given up MUCH MUCH MUCH.  There has been a price to pay. 

I won’t go into the details of the price that has had to be paid.  But it’s a lot.  The price has been high on all of us in different ways. 

And yet, the price is worth it at the same time.  Manny.  His life.  His quality of life.  He’s worth it. 

As I type this his fever has just hit almost 103 again.  But when Doc asked him how he’s doing he said, “I good.”  And everyone laughed.  He is truly one of the strongest people I know.  Which I find incredibly ironic. 

Kaley decided not to come with us this time.  Most of me is thrilled with that.  Don’t get me wrong.  I LOVE having her here.  My life is sooo much easier with her here.  And she can help tag team with me in helping keep Manny entertained.  But as a Mom, I want her to LIVE.  I want her to be a kid.  To have fun.  To be at home playing games and running around with her siblings. 

So how long will we be here?  Depends on several factors.  1) Must be fever free for 24 hours.  And currently he has a fever.  2) His liver enzymes need to be closer to his baseline of say 150’s.  3) He has to be 48 hours negative on his blood cultures and they were just taken tonight. 4) A viral panel was taken and depends on what that turns out as to if we think we can manage the symptoms at home or not.  So if all goes well, Monday is a possibility. 

But if there are any issues with any of the aforementioned factors, all bets are off. 

I’ve discovered that once I get here, I get into “Hospital Mode” and I find a way to go with the flow.  So for now, I will just ride it out.