Sep 18, 2012

And it's enough

Reflections on getting to Boston:

I worked my butt off.  Planned for.  Hoped for.  Had expectations of.  All in Faith/hope of help.  I’d done the research to know who has the best shot at a plan for Manny. 

And yesterday we arrived.  I was completely and utterly overwhelmed.  I was on the verge of tears the whole day.  I was savoring every second of it.  Food tasted better.  Smells were amazing. Grass was greener.  I saw a tree and it was one of those trees that just bring healing by being under it.  I felt grateful and blessed and taken care of.

When the doctor walked in, I almost burst into tears.  I could have hugged him and made a scene.  But I used restraint.  But I FELT like it!  I would have hugged and groveled at the sight of him.  Why?  No one else has been able to help in over a year.  They have all given up.  This man says he will try.  So he has the hope of help. 

I was reflecting during meditation/prayer time this morning about how overwhelming the whole thing is and I came up with this metaphor. 

I know this might sound sacreligious and I hope not but it’s just a metaphor.  Got it? 

So you know how Christians say they wonder what it will be like to meet Jesus face to face? Or ask what it will be like/feel like to be in heaven.  And other such phrases?

Well, I think I got a small glimpse. 

I think what I felt was just one percent of what it will be like.  In that moment, we will know that it was all worth it.  All we planned for will be better than we planned.  All we hoped for will be reality.  All we have expected will be fulfilled. 

For those of us who have looked around at the alternatives to Christianity, I can say that I feel that Jesus has the best plan.  (Sorry to offend any one of another religious affiliation or the agnostics/athiests but I can just tell you what *I* have been shown.) 

Trust me, we WILL burst into tears.  We WILL hug and make a scene.  We will not be able to have restraint!  We will hug and grovel at the sight of Jesus. 

Why? Because he is the only one who has ever helped up.  He never gave up.  He tries (and succeeds).  He not only has the hope of help … He IS Hope. 

And as I write this … the team has done NOTHING to help yet.  Not one test.  Not one plan in place.  We are still gathering information about how to proceed.  And the rest? It’s all hope. 

At the end of the day, that’s all we have.

At the end of our lives, that’s all we have. 

And it’s enough!

Sep 17, 2012

No Leave Me!

I (like most people) have experienced some very sad moments in my life.

Among the top are …

·         Several miscarriages, one quite far along

·         Losing a child who had been with us for almost a year that we were told would be our son, with an hour notice

·         Saying good bye to my father before a very risky surgery where he wasn’t really expected to pull through, wondering if it was the last moment with him (thankfully it was not)

·         Discovering some of the various abuses that have happened with my children

·         A moment with Zoe in China when she said goodbye to her Foster Mother.  The primordial wail that came from that child still haunts me.  And strangely, it wasn’t on gotcha day, it was 2 years later when we went back to visit. 

·         The day we were told Jacob had a fatal kidney disease

·         The day we were told Manny had a month to live

·         And last night with Manny

What happened last night?  Since I was headed to Boston first thing in the morning and still had a lot to coordinate with our trip, I couldn’t leave the hospital.  So I made a list and had Dan bring the stuff to me.  I also haven’t seen the kids in a while (a couple are sick, likely with the same crud that knocked Manny on his butt) so Dan brought the kids and dinner and we hung out. 

It was neat to see Manny interact with all the siblings.  He has special things he likes to do with each one of them. 

Now you have to realize, Manny has been in the hospital A LOT.  And they have come to visit him OFTEN.  So this wasn’t new.  He knows they come and visit and leave. 

But this time was different. 

And I don’t know why.  It worries me. 

As it was time to go he started begging them to stay.  “No leave me!”  It got more and more intense.  He was crying (not pitching a fit), truly sad. 

And then it was time … they HAD to leave. 

Now you also have to understand this … in all the hospitalizations since the first one where we were given the misdiagnosis … I have not cried once.  I keep it together.  I process things in a strange way.  I’ve had moments of sad or worry or frustration, etc.  But was never really to the point where I would just outright boo-hoo. 

But this did it to me.  We closed the door with me holding him and him still bawling his eyes out.  He said, “I sad!” and kept repeating “No leave me!” 

I went to the couch and held him.  We just weeped together.  You know that snot running down your face kind of cry?  And we looked into each other’s eyes and I told him I was sad too. 

We shared this precious little moment. 

And I realized he was vocalizing the reason *I* was crying too!  I don’t want him to leave me either. 

There.  I said it. 

I’m not ready for God to take him yet. 

And I don’t believe it’s time yet anyway, but my heart needed to express it I guess. The reality is not upon us.  But …

Truth is people all around the world are praying for him. For a miracle.  For him to walk and eat and do all the things a 3 year old should be able to do.  We know God can.  God is willing.  God is able. 

I also know that sometimes God says “No” (I wrote a blog about that a long time ago.) 

Sometimes “healing” comes in the ultimate form.  Of being present with the Lord.  And in that moment, Manny will be able to be free to eat and jump and dance and run and eat.  All the things he can’t do now.   And it will be the happiest sad day I’ll have ever experienced. 

But in THIS moment, I’m not ready to let him go.  I’m not.  And I don’t think God is asking that of me yet.  But …

So in that moment last night, Manny, my sweet precious funny amazing Mighty Manny, was able to express what we were BOTH feeling.


I couldn’t have said it better myself!

Sep 15, 2012

Hospital 8

new "catch up" blog at

Like I say on the blog, I had to write it THREE times so by the end, it is the more clinical and sterile version of the details. 

I will work on a blog from the heart.  Like I put on facebook today, Luke 2 says that Mary considered things and hid them in her heart in regards to her Son.  And I understand about considering things and hiding them in my heart. 

Sometimes I struggle with how much/little I should say.  I don't want to bore people who read this but I also think that sometimes, it endears people to see the good, bad and ugly.  Truth just "is". 

Thanks for being with us on this journey.  Feel free to spread word of Manny all around.  We can certainly use all the prayers we can get.  I also want God to get lots of credit along the journey. 

Sep 1, 2012

It can stop raining now

When it rains, it pours as they say.  Well, it can stop raining now.  Metaphorically and literally. 

Monday, Hurricane Isaac was passing to our west and we were getting showers.  Nothing big, just rain and a bit of wind.  But a couple of months ago, we had Debbie go through and SOAKED us.  We needed the rain as we were in a couple year drought.  Her rain got us out of it!  So we're already at a surplus.  We have some loose screens on our pool lanai from her winds too that we still haven't gotten too. 

So Monday night I make a snack and sit in my bed when I hear this dripping sound.  It was raining IN Manny's baby bed!  The ceiling had sprung a leak and was pouring right into his bed.  (Thankfully, he wasn't in it.)  It must have been pouring all day as the layers of blankets and pillows were soaked.  There was even a puddle on the floor.  Cleaned up the mess, put a bucket and went to bed. 

Tuesday, Dan and my parents got on the roof and did a temporary patch.  (And it's still holding it seems.) 

I also took my son (who shall remain nameless for privacy sake) to get an xray.  Did I tell you how he swallowed a quarter?  Just playing with some other kids and the older kids thought it would be fun to play "keep away" by putting it in their mouth, then spitting it out at the bottom of the pool.  He tried it and it didn't work for him.  It got stuck on the way down and finally went to the stomach while waiting at the ER.  They said it should come out naturally in 72 hours or less and we had to be on "poop patrol" until then.  Well, 10 days later, no quarter so we had to do an xray. 

Sure enough, it was still in there. I was told that it was wedged and that an expert would have to look at it and give their opinion of if they thought it would come out naturally or would need surgery.  Got the news today that they feel it will come out by itself!  Phew. 

Next, I have noticed for a while that something is "off" with Zoe's eye/perception or something.  Not exactly sure what it is ... vision? dyslexia? other?  But something is not right.  She is very bright, tries very hard but something isn't quite right.  She was getting frustrated with homework so I decided to do an online assessment for her.  It's just a start but she completely "failed" the assessment.  (And I even gave her TONS of benefit of doubt due to cleft articulation issues).  It's just step one of a LONG journey but my gut was right.  We'll be scheduling her for further testing. 

Meanwhile, Dan had been working on a big deal for months and months and it was 2 weeks or less from closing and bam ... deal off.  I know how many hours and how many headaches are invested into this stupid deal for it just to crumble with nothing to show for it. 

OK so then I thought we were done for the night.  All the kids were in bed.  Then about 10pm, Zoe comes to my room and says her toenail is bleeding.  It had a rough spot on it and got caught in her sock I guess.  I cut the toenail and all was well.  As I was doing that, I noticed something amiss with the bandaid that was on her leg. 

Now the back story to that accident ... a few weeks ago, she went roller skating (like she's done a million times).  I wasn't there so I don't know exactly what happened but apparently it rubbed a raw place on the shin.  No biggie.  Didn't even need a bandaid at first.  I think it itched so she scratched it and we put on a bandaid.  She must have been allergic to the bandaid (hypoallergenic, non latex kind).  So I put on a different kind.  Time passed.  All was well.  Bandage off.  Scab on. 

She then started to school last week and on the second day, she was on the playground and by chance, the heel of a kid's shoe caught the scab just the wrong way and it ripped off the scab. The school nurse said it bled a lot.  She gave her a new bandaid (and new pair of socks) and all seemed fine.  I changed the bandage a couple days later after a bath.  All looked fine, still needed the bandaid though. 

And that leads me to last night ... so as I was doing her toe, I saw a red spot that was coming out of the bandage.  I took off the bandaid, thinking I would find a small red spot and I was in shock at what I found.  It looked horrible.  Cellulitis?  It wasn't hot to the touch and she didn't have a fever but still!  I put medicine on it.  Prayed and sent her to bed. 

About an hour later, as I was trying to go to sleep ... I get a phone call from Dan (it's 11:45 pm at the time).  He says his car won't go into gear and he'd been trying to do it for about 20 minutes.  What?  aaauuuggghhh!  No more!  I can't take any more.  I was getting dressed to go get him when it started.  (Thanks, Lord). 

I finally got to sleep about 1am.  Ready for that day to END!!! 

Wednesday, woke up anxious to go see Zoe's leg.  It looked much improved and I breathed a sigh of relief.  It's not over but I can feel better that this is not likely cellulitis (it doesn't improve that quickly without antibiotics).  Did I mention she is currently without health insurance?  We had it and long story short, got a notice recently that she is no longer covered.  Working to get it back ... but ugh! What horrible timing.  Ironically, tuesday morning I was calling around about this BEFORE I knew about her leg!

Mid day it was time to go to Manny's cardiologist.  It was just his regular 6 month follow up.  Didn't expect there to be any news ... and there wasn't.  No change in heart function.  Still has an innocent murmur and his heart is working great.  But I DID have a few questions for the nice Cardiologist. 

Remember back when he was in ICU recently and his heart rate was skyrocketing?  That's not a shock ... he had fever and his respiratory rate was like 80 plus so it only makes sense that his heart rate would go up.  Not a concern.  What I WAS concerned with was ... when he was running out of energy, his heart rate was dipping dangerously low.  Like low 50's.  For a child his age, anything below 60 that lasts more than about 3-5 minutes is considered a full code blue and they start doing CPR.  His didn't stay below 60 for that length of time but it was teetering for a long time.  It all straightened out once he got on bipap.  But during that time, I was asking what we needed to do to support his heart?  Does he need a cardio consult?  etc? 

So I ran my thoughts past the doc and he said basically I was right on all accounts.  His heart is not the issue, but it was being drastically affected.  It's a sign of the whole body about to completely SHUT DOWN.  And the original ICU doctor either missed it or ignored it.  He said that if ever I feel uncomfortable like that again, that he would LOVE to be paiged and would help me out in no time get what he needs!  This doctor feels that Manny's life is still very much worth saving and would be "all in".  Good to know! 

Secondly, I addressed an issue with him that I'll try to make simple.  About a year ago, tests were done by the endocrinologist to see if they could throw out a metaphorical net and see if they could catch whatever metabolic or mitochondrial issue was going on with Manny.  They only found, "Primary Carnitine Deficiency".  This was noted to the GI doc and she started adding carnitine to his TPN.  Straight forward, right?

Well, except, the TPN bag said, "130" ... didn't say the units.  Mg? Ml?   And he was getting it 7 days a week.  Didn't think much of it.

Then about 2 months ago, I noticed the lipids had been greatly reduced (by 1/3) in his bag without being told this was happening or why.  So I investigated what else had changed.  Now the bag said nothing about carnitine at all.  I asked about it and they assured me it WAS in the bag.  Uh ... that's a problem on so many levels that I didn't even have to make a stink about it.  They corrected the problem immediately. 

But when they did  it now said, "Carnitine .68 ml"   At least we have the unit now but still doesn't tell me the milligrams.  And it's only on the bag 4 days a week.  Not 7.  So I called the pharmacist and we discussed it.  She was amazing and tried to sort this out as well.  There was NO order to change the amount or the days per week.  She is still trying to sort this out. 

Meanwhile, I asked her how do we know if we're having the right amount anyway?  Is it working? Too much? Too little?  Who is following this?  (crickets)

So I asked the Cardiologist this today.  And he got very intrigued! He ordered a blood test.  Should get the results in less than a month!  Yay.  But he was greatly concerned if he truly does have Primary Carnitine Deficiency.  He felt it could be a huge clue in piecing together the metabolic question.  And as I was researching today ... this could be the factor that is causing the hypoglycemia.  How can I find this in hours of research and it's elluding the doctors?  (hypothetical question!)

I got home from the appointment and looked at Zoe's leg again.  And now it was looking worse again.  But of course, it's now past 5pm.  Still not hot to the touch.  But oh my. 

So as I was looking at her and her right eye caught my eye.  I think she has ... pink eye!  That's right.  Just one more thing for this little girl to deal with.  She has not had a stellar past 24 hours!

Meanwhile, Manny's labs have been "off" again.  Weekly, we get blood tests (CBC, CMP typically) and I have kept all of them and put them in a table so I could see trends.  There are a few specific labs that are typically liver related such as: ALT and AST - those have always been a bit high but never over 200.  Three weeks ago, they were 60/80 or so.  Two weeks ago, one was over 400! In addition, the Alk Phos was almost double too.  So it's saying the liver is not happy.  The only good news is that the bilirubin is still within normal range, increasing but still normal.  So it might be more about a current liver issue rather than a sign of decline. 

TPN is extremely difficult on the liver ... remember, he already lost his gall bladder due to it.  The liver basically has to do the work of the entire digestive tract and it wasn't designed for this purpose. One thing that's the hardest on the liver is the lipids (fats).  He is already UNDER the lowest recommended level for his age/weight.  Fats are important for growth and brain function.  The only option is to pull all lipids?? Not a good option.

The second week, the ALT/AST were down but still the second highest number they've ever been.  Alk Phos hasn't gone down.  We got the third set of labs drawn Friday but won't get the results until Tuesday (due to the holiday).  If they are still high, we might have to go to extremes of removing all lipids for a while.  So of course, we're hoping for low numbers.  We can go off the fats for a short time and not cause too much trouble but it's a stinky choice: brain or liver. 

I actually believe in Occam's razor ... the simplest answer is usually the right answer.  And I believe these high labs are a result of his recent (horrible) illness and the drugs that they used when they thought he had a line infection.  I think it's his liver reacting to all of that.  I don't think we need to make a knee jerk reaction to these labs so I called the pharmacist and dietician from the people who make his TPN and made sure we are all on the same page (they are).  Our GI tends to be the knee jerk reaction kind and I made a preemptive strike.  Once she sees the labs (which she should have seen 2 weeks ago but hasn't for some reason), we'll all be on the same page.  Now if the labs drawn this week were high too, then we're outta luck but otherwise we have a case of keeping his lipids. 

Again, all this will be addressed once we ever get to Boston! September 17 to be exact.

Finally ... because this list isn't long enough yet (ha), Manny's had the same GJ tube since April 2011 (so 17 months) and a couple of days ago, it started smelling.  It's never done that before so not sure what the problem is.  Guess I'll call the GI on Tuesday and see her suggestions. 

Now on to the good news ... Sam turned 11 on August 31!! This is one of the sweetest, most kind, generous and helpful kids on the planet. Truly an honor to be his mom. I first knew of him on THE September 11.  While watching the horror of that day, I got a phone call about a newborn. He came into our home at 19 days old! I am a blessed lady!