May 28, 2013

Yet another summary post


Much of my life cannot possibly be recorded in a blog.  Why?  Because when I’m living my life in the full on break neck speed that it seems to always be in, there’s not time to update on what’s going on.  I find myself full of thoughts and reflections and ideas I’d like to capture and pass along… but alas, life is careening out of control. 

So instead, I offer summaries.  These are probably better for most of you anyway as the minutia of my life is probably very difficult to comprehend and is full of things probably better suited to medical analogs than to parenting blogs. 

All that to say … here’s the summary. 

We’ve been out of the hospital for a month now.  WOW!  That’s a long stretch for us.  And I truly believe all the difference is the bipap.  Now the story of the bipap finally has what we think is a conclusion.  Remember how we couldn’t get it approved by medical insurance but they approved a vent that can run in bipap mode … turns out it’s because there is a weight minimum (66 pounds) and Manny doesn’t meet it.  THAT’s the issue.  So the doctor and I just have to sign a legal waiver.  OR they could just give me the vent.  Well the home health DME doesn’t want to do that so they want to go with the waiver but the pulmonologist doesn’t want to sign the liability waiver.  SO… we still have the rental bipap.  That’s right.  We rented it for a MONTH and we still have it.  The DME guy did bring me one.  It didn’t work.  For hours one night it said Manny wasn’t breathing.  The pulse ox agreed.  Maybe he’s sick?  I thought, “What if it’s just the machine?” So I put back on his rental and voila! No beeping and not desatting.  Ugh.  I’d waited a month for this lemon.  So the guy eventually (days later) brought a new one.  It’s working so far… we still have the rental just in case but will turn it in this week if the one we have keeps working right.  And apparently he’ll just have to work on the medical insurance approval.  (Not my job thankfully.)  This only took 6 weeks to do what should have taken hours!

Meanwhile on the nursing for nights so I don’t have to be up 24/7.  We were approved to have nursing start on April 26 (our discharge date).  The agency promised and promised.  (Think used car salesman who doesn’t have what you want but has 100 of this other, older model.)  They had the file for a MONTH and couldn’t even arrange for the initial intake meeting.  I had our insurance worker doing background work to see if another agency could help.  They could.  We asked agency 1 if agency 2 could help in the interim and he got nasty.  He fired us.  Then he lied about me.  It was disheartening.  He’s now under Medicaid fraud investigation (NOT from me … but from the insurance worker).  Well agency 2 had our file for 3 hours when they scheduled our intake meeting.  We had nurses scheduled within 36 hours of getting our file.  We had nurses in the home within 4 days of getting the file.  WOW!

Night one … I liked the Nurse.  She is a Christian and I was very thankful.  Manny had the hardest time going to sleep and staying asleep.  He was on full alert.  Lots of changes for a little guy.  But he wasn’t scared or upset, just awake.  The next two nights same nurse.  We decided to put him to bed in his old routine and move him. That worked great.  2 decent nights of sleep.  No nurse on night 4.  Night 5 a different nurse … manny adored her.  He was flirting.  Unfortunately, she was just filling in and is not a night nurse.  In fact, it was her FIRST night shift ever and she was not a fan.  She loved Manny just not nights.  Nights 6-7 no nurse.  So Manny slept in my room.  (He did great.)

Night 8 was last night and things did NOT go well.  It was back to the first nurse and lets just say I’ve NEVER seen a person Manny didn’t like.  But he does NOT like her.  Not sure what it is.  You have to understand… Manny has met probably 100 nurses and 100 techs or more and he’s NEVER said he didn’t like one of them.  He’s NEVER refused to let them do something for him.  But this one?  He screamed most of the night “NO look at me.  NO touch me.” It was horrible.  He wouldn’t go to sleep.  He finally did but couldn’t stay asleep.  She would go to reposition him and he pitched the worst fit EVER.  At 3am I had to go rescue him.  (Nurse did not approve.  Whatever.)  4am he was screaming that his foot hurt (where the pulse ox is).  She didn’t understand or didn’t want to help so I went back to the room and switched it from one foot to the other.  She said I was spoiling him.  Uh … no. 

First of all … Manny is NOT spoiled.  I doubt anyone who has ever met him would say he is.  But the other thing is .. in  3 years of having this pulse ox, he’s NEVER once complained about it hurting him.  He is the most pain tolerant kid I know.  If he says it hurts, it hurts.  Do something!  I didn’t immediately see anything on the toe but I trusted him and switched it.  He shut up.  He slept.  End of story. 

Interestingly enough … today .. theres a HUGE blister on the bottom of his toe!  Now I know what happened.  I put the pulse ox on a certain way on his foot.  It must have come off or something and the nurse reapplied it.  She put it on upside down.  The part that should go over his nail was on the back of his toe.  I’m livid. 

Well … the whole point of having a night nurse is to get some sleep.  Last night was one of the least amounts of hours of sleep I’ve had in about 8 weeks!  So really rethinking it. 

As I type this, the same nurse is here again.  But tonight I’ve got her in her room (I think Dan’s talking to her about church type things) and I had Kaley put Manny to sleep in her bed like old times.  He was exhausted from so little sleep that he is already OUT.  Not sure when I’ll move him but at some point.  I hope she just doesn’t wake him up like she did last night. 

All the things that bother me about her are minor and can be adjusted with time and tweaks.  But if Manny continues to not like her, she’s gone.  He was fine last week so we’ll give her one more shot to see if it was a change of heart or just a fluke. 

Meanwhile … on other subjects …

His tonsils are still big and swollen.  He keeps having ear infections.  No long term solution there.  No one wants to do the next steps as the next ones are HUGE and problems. 

His labs came back today and they’re way off.  Seems he’s got something brewing.  We knew that though as he has been running low grade fevers off and on since Sunday.  He spiked once but then back down so the hospitalist said we could stay home. 

I truly believe that without the bipap, we’d have been in many times in the past month.  It helps in so many ways. 

Next, he’s gained 5 pounds all of the sudden and out of the blue.  It’s really weird.  I’m concerned.  Something is not right but I can’t figure out what it is.  I’ve got a call into the GI but I bet it’s got her stumped too.  Nothing has changed in his life except the bipap.  That SHOULDN’T cause weight gain.  But who knows with Manny! 

He’s got a weird seeping around his central line.  Doesn’t do it every day but I used to be changing his dressing every 7 days and now I’m doing it 2-3 times a week.  Very unusual and highly strange.  Keeping an eye on it.  Not sure what that’s all about. 

His TPN bags are supposed to be the same.  Daily he gets 1636 ccs of fluid.  A pump gives it over 20 hours.  It tapers up to full speed for the first hour and then runs for 18 hours at full speed and then tapers down to 0 for the last hour.  Well, for the past few days, it’s running out of fluid before the hour ramp.  I’m not worried about the few ccs of fluid he’s not getting.  The problem is blood sugars.  If you are getting 20% of dextrose and then it just suddenly stops, your blood sugars crash.  But if you taper, then you should be stable for longer.  (We all know how sensitive Manny is about blood sugars!)  And so he’s left at the top with no taper.  So I called the pharmacist today and we think we might have a solution.  We’ll see tomorrow. 

Not sure if there is an error in the pharmacy (she’s checking that process) or the new pumps we were given.  Just last week we were required to trade in the ones we had for maintenance and I’ve had numerous problems since with them . 

Meanwhile … Zoe had a birthday and a party.  I’ll dedicate a whole blog to her soon.  Her birthday is 5/25 and her gotcha day is 6/18 so maybe I’ll write a whole long Zoe post.  But she’s having teeth troubles.  Long story short … I think our dentist bill is about to be HUGE. 

Our dishwasher broke over the weekend.  (Not sure when/how that is going to be repaired.)

Our screens on our pool are all coming down so Dan is trying to stick them back up.  He’s doing a good job on the side ones but the top ones are impossible to get without the right equipment (which we don’t have). 

Rodents (likely squirrels) are tearing into our siding all over the house and making nests.  (Dan is also working on that all weekend and we still have more holes.  And new holes.) 

We haven’t made any progress on getting Jacob situated in a room.  Thankfully Mom is letting him stay over there several nights a week.  He sleeps in Manny’s room on the non nurse nights and he has a cot in the boys room the other nights.  But he needs a permanent solution. 

So as you can see … these are just a FEW of the things going on around here.  And you might have been wondering why I hadn’t called a few of you back!  J 

Love you all.  Thanks for the prayers.  We can use them all. 

May 17, 2013

Love Never Fails

This week marks a special 3 year anniversary.  We had brought Manny home on March 26, 2010 (his 9 month birthday).  Then 6 weeks later he had pneumonia and we had to be admitted to the hospital.  Then on May 17, 2010 … 3 years ago today, we got the news that Manny had a fatal condition and would not likely live a month.  Certainly not 6 more months. 
During that stay, I met some amazing people.  Ironically, I’m still friends with and in contact with almost everyone from that stay. 
Dr. Cartaya was our hospitalist.  He walked in our room and asked if we were a full code.  We discussed DNRs and even left the hospital with one.  (It was never renewed once Manny was adopted so there has never been a DNR in Manny’s name, only one in his birth name.)  As I think back on the 3 years, I cannot imagine our journey without him. He and I have had some serious conversations, some crazy ones, silly ones, etc.  We have grown to respect each other and our judgments regarding caring for Manny.  He has thought out of the box most of the time with us.  I’m thankful he’s been on our journey. 
Stephanie was one of the IV nurses.  She not only cared for his IV needs, she cared for me.  Manny had been having oxygen issues and she even empowered me on how to deal with some of the staff.  I’ll never forget our first meetings.  Over the 3 years we have been through a lot together as well.  There have been MANY IVs, blood draws, PICCs, dressing changes etc .  She has taught me so many things about how to keep Manny safe.
Dana was one of our first nurses.  She was the nurse on the day when we got the devastating news.  She even went down with me to an EEG.  There was a moment where Manny was having troubles breathing and he was getting upset.  I crawled up on the bed with him to comfort him.  My friend (and fellow adoptive Mom), Tara, was there and actually captured the moment in pictures.  (What a gift!)  There was a point where I was just face to face with him and trying to bring him peace.  For some reason, I happened to notice and both Dana and Tara were trying not to well up with tears.  There was just such a tender moment that I’ll never forget it.   Dana works on the 8th floor and we’re rarely admitted over there any more so I rarely get to see her.  But she is a dear friend.  I’ll always be grateful for the way she loves me and my son. 
Dr. Prpich is the Pulmonologist.  I hadn’t met him until this exact date.  The Neurologist was sitting on the couch with me delivering that horrible news (I can’t imagine being a physician and having to do that).  And as he was in the middle of the prognosis, a person was standing in the doorway.  He eventually slipped out and came back later.  It was Dr. P.  He apologized for interrupting that moment; that he had no clue I was just getting that news.  But I told him I was glad he was there as he was going to be a key physician in my son’s care and we needed him to be in the loop.  Yesterday I was in his office for a hospital follow up.  I reminded him it had been three years.  He was shocked to know it had been that long! 
There are many many more I could name.  But the truth is … I kinda feel there was “Life before May 17, 2010” and “Life after”.  Tonight I was reflecting back on those days.  The emotions are all still RIGHT THERE.  It’s like life was put on slow motion and I can remember every single details.  I remember the room.  The techs.  The feelings. 
I was looking back at the blog entries from then.  If you want to do that … you have to go back starting in early May 2010.  It’s an interesting read … and if nothing else, you’d enjoy looking at pictures of baby Manny.   (Here’s a good sample one … http://destinyshousechurch.blogspot.com/2010/05/week-ago.html)
No one ever thought he’d be alive 3 years later.  I know we hoped.  We prayed.  We begged.  But there were no guarantees.  Afterall, we have friends who have lost kids early.  So to be celebrating this milestone is amazing to me. 
I was also thinking about several of the moments that prompted us deciding to adopt Manny.  I’m sure I’ve told it on here before but … the final straw moment came in the form of a song.  “Love Never Fails” by Brandon Heath.  If you’re not familiar … http://www.youtube.com/watch?v=geVbSntnOd8
It’s worth the 3 minutes. 
But 3 years ago, I had just dropped off all the kids at school.  Even Zoe was in preschool.  I had a rare moment to myself so I went to the store.  I’d just pulled in the parking lot when this song came on.  I’d never heard it before.  I was a singer so music speaks to me in a powerful way.  And the words just had me unglued. 
Here are the lyrics
Love is not proud
Love does not boast
Love after all
Matters the most

Love does not run
Love does not hide
Love does not keep
Locked inside

Love is the river that flows through
Love never fails you

Love will sustain
Love will provide
Love will not cease
At the end of time

Love will protect
Love always hopes
Love still believes
When you don't

Love is the arms that are holding you
Love never fails you

When my heart won't make a sound
When I can't turn back around
When the sky is falling down
Nothing is greater than this
Greater than this

Love is right here
Love is alive
Love is the way
The truth the life

Love is the river than flows through
Love is the arms that are holding you
Love is the place you will fly to
Love never fails you

Love is not proud
Love does not boast
Love after all
Matters the most

Love does not run
Love does not hide
Love does not keep
Locked inside

Love is the river that flows through
Love never fails you

Love will sustain
Love will provide
Love will not cease
At the end of time

Love will protect
Love always hopes
Love still believes
When you don't

Love is the arms that are holding you
Love never fails you

When my heart won't make a sound
When I can't turn back around
When the sky is falling down
Nothing is greater than this
Greater than this

Love is right here
Love is alive
Love is the way
The truth the life

Love is the river than flows through
Love is the arms that are holding you
Love is the place you will fly to
Love never fails you
 
 
You see the TRUTH written in those words?    Love doesn’t run or hide or keep locked inside?  Well, that’s what I would be doing if I didn’t accept him into our lives. 
Love sustains and provides?  It hopes, protects and believes even when I don’t??  You see, I was doubting that we could do this.  I was afraid this would be very hard.  I worried what this would do to our family, to our other kids.  God was saying directly to me … I’ve got this!  (And since God IS love … then it means that God never fails too.) 
By the end of the song I was in a puddle on the van floor.  I was yelling, “I get it!!”  And I went home that day and said we would be his family. 
Now fast forward 3 years …It’s been HARDER than I even began to think 3 years ago.  All the things I dreaded and worried about have come true PLUS some.   
People say they want a crystal ball.  Trust me, the future would scare them so bad they’d never leave the house!  Because the truth is … we grow.  We learn.  We get new muscles.  We gain faith.  Over time we become strong enough to handle what is coming.  Just like a Mother holds her newborn 8 pounder.  Then eventually he’s 10 pounds and 20 and she can still hold him.  Why?  Because her muscles have grown as he did. 
Well … the last three years have kicked my butt in more ways than I’d like to admit.  But I would not trade even one day, not one experience.  Even the hard stuff.  Even when I screwed up and failed. 
I would not give up one day of my life with Manny. 
And I’m willing to bet that most of you (even the ones who have never met Manny) could not imagine your life without him in it.  
Life with Manny is harder than I ever dreamed possible.  But LOVE NEVER FAILS. 

May 11, 2013

Mother's Day Reflections

Mother’s Day … For many people it’s about flowers or cards or brunch out.  Or maybe it’s that hope of, just for once, using the bathroom without an audience.  But for me, it’s a mixed up jumble of emotions. 

I reflect on the children that are not in my home.  I’m saddened by the children I never got to mother.  And they come in different forms.  Failed adoptions.  Miscarriages.  Babies who have transitioned from this life to the next.  Foster children placed with other families.  But each one leaves a tiny fingerprint in my soul.  And mother’s day brings it all up. 

The other day we were cleaning out the garage.  We’re making a room for Manny so that means Jacob needs the garage converted.  I came across a rocking chair.  It’s broken and in pieces.  And I immediately was in pieces as well.  It’s a chair from my childhood.  I enjoyed rocking in it.  I envisioned the children that would play in it.  And somehow, in the midst of raising my kids, I never got around to fixing the broken rocker.  And so I let it go.  It’s just taking up room.  It’s not useable.  And so I keep the memories and not the chair. 

But as I let it go, I realized it’s the same for all the children that I thought I would get to parent but I didn’t.  Those dreams are just as broken as the chair. 

I also reflect on the children that I AM parenting.  I’m amazed at the people they are becoming.  I’m thrilled for their accomplishments.  I love hearing their thoughts and hearts through prayer. 

I also miss their former selves.  I miss the sloppy kisses.  The cherub faces.  The simpler times of toddler bubble baths that have made way for me begging them to take a shower. (“You have smelly feet.  I can smell them from here!” may or may not have been words uttered in my house.) I miss the days when a snuggle in the rocking chair and a kiss would mend the boo-boos.  Those days have been traded for heartbreaks and consequences of choices.  And they don’t hate me … yet. 

I’m in the thick of parenting.  And it’s hard to stop and reflect.  It’s hard to get an accurate assessment of how I’m doing as a Mother.  There are days I feel quite proud of the people they are becoming.  And other days I realize just how far we have to go in the “train up a child” department. 

And I pray … a lot.  Asking for God to help take up the slack.  The job is overwhelming.  And yet there is no way to let up, not even for a second.  Being a mother means being “all in all of the time”. 

So somewhere in the midst of all the busy-ness, a lot of us mothers lose ourselves.  I heard that before I was a mother and had no clue what that meant.  But now?  Now I understand.  I still know who I am.  I know my skills.  I know I need to take care of myself.  I know I’m valuable.  But I’m not sure where THEY end and *I* begin.  Maybe this quote captures what I’m saying:

“Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body.”  ~ Elizabeth Stone
 
I also am beyond thankful that I have the children that I have.  God certainly placed the right children in my life.  He’s pretty smart.  And I’m thankful that even with 2 kids with “terminal” conditions, they are still alive and in my arms this year yet again.  That’s not a thought I take lightly. 
 

As I reflect on Mother’s Day I must reflect on the orphan.  No child should be without a mother.  One of God’s basic mandates to the Church is to take care of the orphan and the widow.  And I’m just na├»ve enough to believe that if we did that… if the church got a vision of what this means… EVERYTHING would be different in the world. 

I’m disgusted by the apathy of the world.  The selfishness. 

And even in the world of adoption, there’s competition rather than collaboration.  People judging that their kid came from international adoption.  Or didn’t come from foster care.  Or that you didn’t adopt special needs child.  Or you didn’t adopt two at once.  Or It wasn’t an older child.  Etc etc. 

Hold up everyone!  How about we recognize we are all heeding God’s call on our lives?  How about we acknowledge that we are following the Lord’s lead in adopting?    We need to get over ourselves. 

So am I saying everyone needs to adopt?  No.  Not at all.  Trust me, not everyone is cut out for this lifestyle!  But God DID say that we are ALLLLLLLL to be caring for the orphan (and widow).  So how about adopting a family?  What would the church look like if every family that could adopt did and all the families that couldn’t adopt would find a way to help care for those families and care for those orphans that cannot be adopted for various reasons?  More families would step up if they knew they had the support of their community. 

It’s often the little things.  Like 10 years ago, Luke was born.  I brought him home from the hospital at 3 days old.  The same day, the lady across the street brought home a newborn too (home grown).  She had several baby showers.  Had weeks and weeks of meals delivered to her.  Their church even organized a cleaning crew from the church once a week for about 3 months.  And me?  Nada.  Noone even THOUGHT that it would be helpful.  I never forgot this stark contrast.  No matter how a child is “placed” into a family, there are needs.  The church needs to help. 

Matthew 6:33 comes to mind.  In highly paraphrased modern Beth version … “Get busy doing God’s work and what He asked us to do and He’ll take care of the rest.”  I’m just simple-minded enough to take Him at His word.  Caring for the orphan is one of those jobs.  

So while I’ll be sitting admiring my flowers.  And reading the hand made cards full of glitter glue that says how much my kids adore me.  And while they attempt to make me brunch (and the whole time I TRY not to calculate just how long it will take me to clean it up).  And while I get extra hugs and kisses.  I’ll be most blessed among women.  I know it. 

And yet, part of me will be thinking of all the children who have no Mother. 

Psalms 68:6 says “God Sets the lonely in families.” I’m praying for God to open the hearts of more people to the plight of the orphan.  May there be no motherless children next Mother's Day.

May 7, 2013

Home still


The week has been very very very long.  Since being discharged from the hospital, we’ve been super busy. 

Manny is still quite sick.  He has a double ear infection and both tonsils are quite enlarged and red.  He has tons of post nasal drip so I’m suctioning often.  He is trying to be happy but there are moments where he just can’t get it together emotionally. 

Nights?  Well, those are very long.  I’m so very thankful for the bipap I rented!  You see, prior to bipap, if he got this sick, he’d have to be hospitalized.  Then if he got sick enough there, they’d put him in the ICU and put him on bipap.  So basically he’s sleeping on the ICU machine.  It’s the only reason we’ve been able to stay home.  Now with that said, it makes me a bit nervous as we’re coloring out of the lines even further than normal on how to handle him and how sick is sick enough to warrant an admit to the hospital?  Let’s just say I’m sleeping a bit lighter than normal. 

Several of the nights all has been fine.  But last night (Monday night), he was having troubles maintaining oxygen saturation even while on bipap with oxygen.  I had to turn it up several times during the night as well.  And his heart rate was quite elevated.  Not sure exactly what all was going on but he was having troubles with his airway (between the massive amounts of saliva in the back of his throat and his tonsils so swollen). 

He’s struggling because he has these infections that require an antibiotic but we have no antibiotic we can give him at home.  I know at some point his body will be able to fight it OR we’ll end up back in the hospital with a fever and get antibiotics there. 

Well, his temps have been climbing.  One day it hit 100 then down.  Today it was 100.9 before it started its descent.  (101 is automatic admit).  So it’s close.  Let’s say … I’m packed. 

Meanwhile, remember how I was stuck in the hospital because we were waiting for the home bipap/vent?  And it was taking so long that I rented one so I could get home?  Well … we STILL don’t have one!  Isn’t that insane?  If I hadn’t thought out of the box and rented one, I’d STILL be admitted!  I’ve been home ELEVEN nights!  And who knows when the machine will show up!  Unreal. 

Also remember how I got to the point where I was desperate enough to need help and asked for night nursing?  And we were all approved?  We should have started with a nurse on the night we were discharged (I got the paper saying so).  Well … we still don’t have one.  Not one night.  And as of yesterday (Monday), I was told no one around here can staff a night nurse for us.  It’s not that I’ve asked for some ridiculous set of skills or they’re scared of Manny or anything like that … they haven’t even gotten far in the process yet!  They just don’t have a body to send us.  I’m asking what can be done about that.  Like can we get an aide?  Family member and they pay them?  Other?  This is insane too.

I JUST WANT SOME SLEEP! 

Now … because we have (in faith) decided we would need a night nurse, we have had to do some massive rearranging of things in our house.  We have a 5 bedroom house but all the rooms are full.  Dan, Manny and I share a room.  Kaley and Zoe share a room.  Sam and Luke in a room.  Jacob/guest room.  And Office for Dan (he owns a business and runs it from home).  So where does Manny go? 

The solution we arrived at was to put Manny in Jacob’s room.  And we’ve been doing that.  Massive amounts of stuff had to come out of that room to accomplish that.  Manny’s toys and medical supplies and furniture all had to go in.  We had to paint and decorate it. 

Then all the stuff from Jacob’s room has to go to his new room which will be the garage … but right now … it’s a garage full of stuff.  So the stuff is getting sorted … give away, throw away, storage, etc. 

So as of tonight, Manny’s room is basically completed.  And Jacob is currently room-less.  His books are on a shelf in the garage.  His desk on the back porch.  His clothes in the hall closet.  He is sleeping a few nights at my Mom’s house each week (already had been doing that for home schooling purposes) and then he’ll rotate on a cot in either the living room or the boy’s room until we can get the garage done.  We’re about 1/3 done emptying it. 

I’m exhausted just thinking about all of the work we have done and how much still left to be done!  But I just put one foot in front of the other and get it done. 

And right now … my front door entryway is a horror story! About 5 boxes of children’s books that are being given away.  (Manny can’t flip pages of books easily and Zoe is way beyond these books.)  And there are 4 bins of old toys.  Plus 4 bags of clothes the boys have out grown!  Yikes!

I’ll post some before/after pictures of the rooms when I get the rooms to a place where I am willing to claim them!  And Manny’s room?  We went with “Angry Birds” theme for now.  He LOVES it!

So that’s a bit of my crazy life.