The Meeting

Last week, we had an amazing opportunity. (I haven't mentioned it yet for several reasons... one is we ended up straight in the hospital so I've been focused on this.  But the other reason is that I want to give some privacy. And finally, I can't imagine so it's hard to comprehend.) 

But ... we met Manny's birthparents. 

(I'll give you a second to absorb that thought.)

I'll Call them R and V.  R is this tiny young lady who is sweet and gentle.  It was clear that she loves Manny a lot.  I knew when we got him at 9 months that he had been loved a lot.  She kept in touch with the adoption agency and asked for a meeting. (I can't imagine seeing your child after TWO years, knowing he has a "terminal" condition and is not doing well.) 

One of the gifts was a dog that had the name tag "Scout" on it.  I had told them that he could read and no one believed me.  So he points to the letters and says, "S.C.O.U.T."  And they were all impressed. 

To our surprise, V (birthfather) was at the meeting as well.  Now I know where Manny gets his looks.  I could see very little of Manny in R.  But he is a "Mini V".  And this man, so gentle.  Perfect smile, perfect teeth, sparkle in his eyes. 

They say they speak no English so we had to communicate through a translator.  But I also noticed that V could understand most (if not all) of what we said. 

R brought him TONS of things.  Toys, shirt, shorts, hat, socks, diaper bag.  The things kept coming. This bear Scout is his favorite so far.

I gave her a gift of a necklace.  It's a symbolic thing.  I have a similar one that I wore to the meeting.  She seemed appreciative but overwhelmed by the whole meeting. 

A funny moment happened when we first got there.  She wanted to hold his hands but he wanted to play. He was sitting in the wheelchair playing with cars.  She was trying to hold both of his hands and he kept saying, "Let Go!"  They couldn't understand him so she kept doing it.  I couldn't help but giggle a bit. 

I know she just wanted to be with him, near him, hold him, know he was OK.  She says she knows she made the right decision.  But she gets a lot of grief from family members about her choice.  We tried to reassure her that the decision gave him a shot at life.  I hope it's enough to give her some kind of peace. 

She said she had been having a lot of bad dreams.  Mostly dreams of his demise.  I assured her that if/when something happens to him, we will let her know.  With that news, she breathed a sigh of relief. 

V?  He just sat and watched Manny.  Smiling endearingly.  He was enthralled and content to just watch him, to absorb him.  He truly enjoyed Manny. 

We got lots of pictures and several videos.  I cannot really post them due to their privacy.  And without the pictures, the story is incomplete. But I respect their privacy. 

I hope that somehow, it gave her some kind of closure.  I know she can tell he's doing well.  That he's loved.  That his medical issues are waaay beyond what she could do.  But ... even still, I cannot imagine how hard it is to be a birthmother.  I can't begin to know what it is like to have your child, that you love and adore, but can't be with. 

I KNOW beyond the shadow of a doubt that R's decision to place Manny for adoption SAVED HIS LIFE.  And she was brave to make that decision for HIM.  Because the best thing for HER would have been to keep him. 

Before we knew it, the 2 hours were up and we were saying goodbye.  They said they were grateful from the bottom of their hearts. 

The whole thing was surreal and a blur.  I know it was the right thing to do to meet them.  We have chosen to still not share personal info with each other, but instead communicate through the adoption agency.  (The director has become a friend in the process.) 

And Manny?  How did he do?  I didn't tell him who these people were.  I said they were friends.  But he still acted a bit "strange" around them.  He was a little "off" as he met them.  He warmed up and showed his real personality by about half way into the meeting.  After, I told him their names as I showed him pictures from the meeting. 

I don't think he understood... but you never know how much sinks into that brain of his. 

At this point we have no plans for a future meeting.  I will send them periodic updates and pictures. And we'll figure out the rest of the journey as we go.   

I'm thankful for the opportunity that many adoptive families NEVER get.  But mostly thankful for their selfless gift of Manny.  So many lives have been changed by this little guy. He is a gift to the world. 

Thanks R and V!  

Blood is a good thing

At 1am, it was finally time for the blood.  If you've never been around for the transfusion process, it's "intense".  There are so many forms (all having to be witnessed by two witnesses).  Every step along the way has to have 2 witnesses.  Our nurse missed one small second signature on one of the labs and the whole process had to be started over.  She was overly apologetic but it was truly not a big deal. 

Since the blood could be taken from his central line, there was no pain or problem for Manny.  And since he was going to receive more blood, I wasn't worried about them taking too much.  So just a small delay in timing to make sure it's all done right?  I was fine with that.  Besides, this floor I'm on basically never gives blood transfusions.  It's either done in the ICU (down the hall) or on floor 1 (the hematology/oncology floor where tons are done).  So these nurses rarely do it.

So the two nurses come in for the administration.  They have several redundancy safety measures built in.  And then both stay for the first 10-15 minutes (as that is when the risk of reaction is the greatest).  Then the primary nurse stays for about 30-45. 

But somehow, after the first 10 minutes, we repositioned him and saw that the blood was all over him and not going in him.  There was something wrong with the tubing and the way it connected.  Pretty easy fix. 

But there was a lot of blood all over him, his bed, etc. It looked like a crime scene! I was joking saying I should take pictures and punk all you readers but their reaction was soooo horrified that I realized most people probably don't take this so lightly as I do.  But I'm relieved!  He was finally going to get some blood, some much needed blood.  I saw this coming for weeks. So I was happy that he was finally getting the help he needed. 

About 10 minutes after the blood was actually going into him, he had a definite reaction.  He WOKE UP!  I mean it was hilarious.  He went from this grumpy baby who was screaming and objecting to everything back to "Manny".  He was flirting with the nurse, asking to get up in his wheelchair, asking to play ipad, asking for TV on.  He even said he wanted to go to Chuck E. Cheese.  The nurse asked if she could go too and he yelled, "NO!"  In a very playful voice and then laughed. 

The problem was ... it's almost 2am and he's wide awake and ready to play.  Me?  Ready to crash.  Thankfully, I'm good at being boring at 2 am so he eventually faded back to sleep.

The rest of the night (the next four hours) were uneventful. 

And now this morning I'm just thrilled to have my baby back.  He's himself.  He's still sick as a dog ... has a high fever, feels miserable, is trying not to let it settle into his lungs, is still weak (all flu related) but for whatever reason, he needed blood.  And now he has it. 

Now we work on the two things.  1) Get him over the flu without letting him get new complications.  2) Uncover the cause of the dropping hemoglobin.  Hopefully some of the blood tests will be back and point us in the right direction. 

10am, got the results of the Liver Ultrasound ... completely normal!  I am beyond relieved about this.  Why?  He was on TPN for 3 months when his gallbladder "died" and typically liver is next on the list.  He is showing some signs that could be liver failure ... so this is huge!  Great news.  Phew! One thing off the list.  (For now). 

11:30 Doc came by.  I told him I was only 2 hours into researching iron studies so I wasn't exactly an expert yet.  I was having a hard time differentiating between iron deficiency and anemia of chronic disease based on his labs.  Doc said that is because he has both.  It's a good thing that I know my kid and trust my gut.  For 6 weeks now I have been concerned.  Something is wrong and I knew it.  Sadly, I was right. 

Am anxious to see the Hematologist for the next steps.  She should be able to explain where we stand, how bad off he is, treatment options, etc.  It's so complicated because what helps low iron will actually exacerbate the other type of anemia.  So have to find the fine balance. 

1pm Dan and the kids showed up to bring me a few things from home and relieve me for 30 minutes or so to run to the grocery store to get us some food.  It's so difficult to get to the cafeteria and leave Manny when he is so sick. 

Just after they arrived, the hematologist arrived.  She said we will take this in steps.  He definitely has low iron.  They will try to solve it with the least complicated method first and then go from there.  For most people, that would be to take iron.  Well, he can't do that.  So next would be to put it in the Gtube.  Those who have followed along  know that his gtube is basically unusable.  He hasn't had anything put in it since February 2011.  (Well over a year).  But the doc wants to try it anyway as this is his best chance of absorption. 

But as I type this, he is retching.  They say if we can keep it down for 30 minutes that would be good.  We'll see.  Also, his bottom lip is swollen.  (Strange!)  The nurse I have today isn't one of our "regulars" so she doesn't know us well enough to know that if I am concerned about something, then it's concerning.  But I looked up the side effects and swollen lips is on the "severe reaction" category.  Seems like we are allergic to the iron.  :(

Not to worry, if this doesn't work, we still have IV iron that can be done.  (It would be given at the Hematologist office which is inside the hospital for close monitoring.)  It's just a lot more difficult. 

And it's only with time that we could differentiate from "simple" anemia vs. anemia of chronic diseases (an inflammatory process).  She said that is only confirmed with process of elimination.  I am THRILLED to have someone monitoring his results besides me.  They have asked me to fax the results to them weekly. Yay. 

In the meantime, she felt that there is no hematological reason to stay in the hospital.  So once he is fever free for 24 hours, we can go home.  That means the flu just has to run it's course.  And with the blood on board, he has a fighting chance! 

He's doing better.  Still sick.  Still high fever.  Runny nose, cough, etc.  But he asked to sit in his wheelchair and play ipad.  It's the first time he's been out of the bed since we got here.   Happy to see it!

7 pm, Manny started retching even harder.  He wouldn't stop.  I vented his G tube and out came all the iron (that had been put in at 3pm) along with a whole bunch of other "gunk".  He was screaming as it came out.  Then he started yelling, "Owie Face!"  I've never heard him mention his face before.  Eyes or ears or nose or neck yes but never Face.  So very very strange.  His lips were still swollen and the skin below his eyebrows was bright bright red.  The nurse saw this and called the doctor immediately.  The reaction subsided as soon as it all came out his gtube. 

Then he crashed in exhaustion.  But he's been awake most of the day, so that is a huge improvement.

Full day

8:30am, Dan calls and says that Luke is the next soldier to fall to the illness that is going around.  So if anyone is keeping track, Dan, the girls and I haven't gotten this.  I find it interesting, it's all 4 boys that have gotten it so far. 
Us?  The night was long.  Every time someone would come in the room, he would SCREAM until they would leave.  He was very, very scared waiting for the next bad thing to happen to him.  But truthfully, this has been one of the easiest admissions so far. 

He has the central line to draw the labs off but usually with a fever, they want a blood culture from the line and one from a peripheral site.  Doc and I agreed that this is likely a flu so the cultures are just a formality.  IF the one from the line comes back positive, THEN we will do the extra needle stick.  But odds are it's nothing so why needlessly prick him?  (He is having a hard time healing and clotting right now and even more a difficult stick than normal.  And the blood sticks they did more than a week ago are still not healed. Not a good sign.)

The specialists have start to wander by.  First was the Neurologist who was the one assigned to us two years ago.  He is the one who gave us the news of his HORRIBLE brain scan and that he would likely not make it to his first birthday.  (I don't feel he made a mistake.  It was the wrong diagnosis but he was going by the other cases that he had seen of similar looking MRIs and thought that is what he was looking at.)  Anyway, he referred us on to a different neurologist once Manny's diagnosis was "beyond" him.  We haven't seen him in like 1 1/2 years.  So imagine his shock to see how GREAT Manny is doing ... sitting, talking, etc.  (All things his MRI would indicate he could never do.)  Why him today? Because this neurologist is covering for our regular one for the weekend.  It was cool to see him again, but I know way more about Manny's condition than he does so he was at a loss of how to help or what he could do.  (Which was to be expected by the way.) 

Next came in the lady to the the Echo for Manny's heart.  Doc heard what he felt was a difference in Manny's murmur.  He wanted specifically to see the Ejection Fraction (i.e. the function of the heart).  And the tech isn't supposed to interpret the results, but she is a friend.  She said it looked normal to her.  (phew).  That is good news meaning that his heart is still functioning like it should.  (With his underlying muscular dystrophy, about 1/3 of the kids develop a significant cardiac condition.) 

As I was typing this, I got the labs from the middle of the night ... uh ... he'll be getting a transfusion SOON I am sure.  Oh my, oh my I am glad we're in the hospital for this! 

Doc came by and stayed for a while.  We discussed the short term and the big picture.  (He is the ONLY one who will do this with me!)  We are on the same page, as usual. 

Short term ... this is likely the flu and we just have to support him through this with respiratory, fever, dehydration, etc.  He's being closely monitored so we're good.  I feel thankful to be here and not doing this all alone.  We're surrounded by people who love him, who know him and have his best interest at heart. 

Long term ... he feels this is a manifestation of the progression of his illness.  It's possible that his hemoglobin and red blood cell decline are "anemia of chronic disease".  He says he'll defer to the hematologist for that diagnosis for sure but that's his guess.  (That is not good news.)  And we're on the same page about the TPN too ... it's the only option we have right now, but it's a very life-shortening decision for him.  :(  

Look how tiny he looks in that bed.

He says we will be getting a transfusion today no matter what.  (Even if hematology doesn't agree with the decision.)  There are apparently new guidelines for adults of when to transfuse but the pediatric guidelines have not been established yet.  So it's gray area. 

Meanwhile, it's noon and Manny is already back asleep.  He hasn't asked to get out of the bed today.  He hasn't asked to play.  He hasn't played with his ipad.  For those who know him, they know this is NOT him. 

2pm he had to go down for an abdominal ultrasound (looking at the liver mostly to see if that is the culprit of our big picture problem).  He SCREAMED and begged to stay in bed, not get in the wheelchair.  He cried the entire way down and the whole time in ultrasound and the whole way back up.  Soooo not like him.  I did a temp right before we left and it was the highest his has been. 

Finally got back to the room (a long 25 minutes or so) and he went right back to sleep.  It's 4pm now and he's still out.  He is very, very pale looking.  Breathing is shallow.  He does NOT feel good.

I am sooooo relieved to be here and not at home with him this sick.  There are times I would rather be home as I feel I can better take care of him than they can.  But this time, I need help.  I need the extra eyes, the machines I don't have, ICU just a few feet away, etc. 

Still waiting for Hematology doctor to come give us the low-down on what they think is going on, what tests they want to run and their proposed treatment plan.  I know that either way, Doc is giving us some blood. 

And again, my brain goes to all those people who willingly give their blood for people just like us.  I used to be able to give  (prior to a health challenge of my own) and I thought NOTHING of it.  Just stop by, donate, no biggie.  Truly, truly never saw it as a big deal. 

I also think back to an Uncle I never met.  He died when he was early 20's and my dad was 16.  Uncle Billy had become a Jehovah's Witness (his wife was) and he got ill, needed a blood transfusion.  He would have lived had he gotten it but his religious convictions prevented him from getting it.  I do not judge him for the decision to stick with his faith.  But I do wonder what he was like.

And it makes me all the more aware that blood can be the difference between life and death. 

4:15 the hematologist came in.  Upon coming in, she was not convinced that he would need the transfusion. Upon seeing him, she knew immediately.  He is pale, not waking up, etc.  It was a no-brainer she said.  She will be doing a blood work up as well.  She mentioned iron tests, blood smear test, an electrophoresis, bone marrow ... but will look at the big picture first to see what all she will order and when.  I like that they are systematic and not reactionary.

4:30 Nurse popped in and said, "You are such a smart Mama!"  She said the labs just came back positive with Influenza B.  I knew it was the "flu" I just didn't know the exact strain. 

5pm talked to Dan and Luke. He's miserable and I can't be there to Mother him!  I feel so torn and helpless.  The "sick" room is all set up with vaporizer, fan, medicines, TV, etc.  I hadn't dismantled it since Sam used it.  And Sam will make a good "Nurse" ... he knows all I did for him and can do some of it for Luke. 

And by talking to Dan, Manny perked up for the first time.  He was actually happy, talking, interacting.  After Dan hung up, Manny asked to sit up and play ipad in his bed.  Yay. 


6pm, I hear the nurses getting all the orders read and prepared that the Hematologist ordered.  This takes a LONG time to do because of all the special protocols for blood transfusions.  Given that we are almost at change of shift, I bet this will be done later this evening.  (Which is fine.) 

6:30 blood was drawn ... lots of blood tests.  All ordered by the Hematologist.  If he weren't about to get more blood, I'd be greatly concerned about the volume they're taking out! But they're about to replace it with someone's much healthier blood so all is good.  I'm very intererested to see the results since they are all tests that have never been ordered before. 

6:45 he is back asleep.  He BEGGED to go to sleep.  At least he was awake for almost 2 hours! 

This blog is already long enough so I'll sign off now and start working on the next one. 

Thanks for all the prayers, notes, emails, calls and support.  We feel you holding us up in prayer!

Happy 2 year anniversary

Life is never dull.

Last week, Sam (our 10 year old) got a fever, no other real symptoms.  Lasted 5 days.  About 3 days in, Jacob (13) ditto.  Kept doing our darndest not to let the rest of them get it, but especially Manny. 

Why?  Because when he gets a tiny thing, he gets BIG sick.  And his labs are showing that his white blood cells and his red blood cells are way low, which leaves him vulnerable. 

Meanwhile, several people are looking at the labs and are concerned but it is not clear as to who is "in charge" of the case.  Why is this concerning?  His levels are below the level that would need a blood transfusion.  Now this is a matter of judgment as some people can handle lower hemoglobin levels than others.  But the problem is when the person becomes symptomatic. 

So here's a quick education on hemoglobin basically.  It is what carries the oxygen through the blood.  So the lower your hemoglobin, the lower the oxygen in your cells.  A child his age should be around 14. Most doctors like to keep it above 10.  Transfusions run their own risks.  About 10-20 years ago, the rule of thumb "transfusion trigger" was 10 for the hemoglobin.  And 30 for the hematocrit.  (His hematocrit is 23.8). Now the thought is below 8 for sure.  In the 8's if the person is symptomatic.  

What symptoms?  Well, any kind of breathing issue.  (High respiratory rate, low oxygen saturation, etc.)  

Manny's oxygen saturation is normally about 98-100.  Even a couple of nights ago, this was what he was running.  Last night, he was hitting the low 80's.  So yes, his breathing is being affected.  

Thankfully, this morning I had an appointment with his Pulmonologist.  He was concerned.  Concerned enough that he stepped out of the room and called his friend, the Hematologist.  They set an appointment for Monday.  All this was done before he came back into the room.  

I then got Manny into the car and when I did, he felt hot.  Very hot.  And I knew what this meant... a trip to the ER at a minimum (for blood cultures ... remember, the rule is: if you have a central line and a fever over 100.4, you have to get a blood culture... and then it's up to the physician if they admit and treat or not).  But I also knew that given his strange labs, they'd admit him.  

They did.  I called the pediatrician.  She called the hospitalist.  3 minutes later I got a call from the pediatrician that Manny would have a bed ready when we got there.  

I packed the last minute items.  (See, I keep a bag packed but the last minute things have to be added later like the phone charger, laptop, etc.) 

I explained to the other kids what was happening.  (that's always a hard conversation).  We prayed as a family.  

Kaley, Manny and I headed to the hospital.  The whole way (abotu 45 minutes), he was passing out and retching alternating.  He said, "I not OK."  and "I sick".  

Got to the floor and he perked up a bit to see all his peeps.  They always have the same reaction, "Hey!!  Nice to see y... Oh, no!"   They love seeing us but hate that it's because he's sick again. 

Doc came in and I said, "Happy Anniversary!"  He was like, "Of what?"  It was exactly 2 years ago that I was admitted to the hospital for the first time.  He wasn't sure if Manny would survive the night. So to see him TWO YEARS later, it's a blessing.  The three of us have been through a LOT together! 

So I tell him the symptoms ... High fever, lethargic, combined with erratic breathing, high heart rate and bad labs. (Specifically his WBC is 5.1, RBC 3.0, HGB 8.0, HCT 23.8 and all are dropping.)

Doc is going to call in a whole slew of specialists for him. 
Hematology for all his wacko labs.
GI for his TPN needs, etc
Cardiology for his "innocent murmur" that is "different" this time I'm told,
Ultrasound for his liver that is tender.
Neurology/MD Doc for a consult about a possible progression of his Muscular Dystrophy symptoms
He also ordered tons of bloodwork, a chest xray, a viral panel, a strep test, etc. etc.  

What does this all say to me?  Doc is concerned too.  

We got here about 5pm and he was begging to sleep.  He slept off and on until about 7:30 when he started screaming! He was burning up again too.  Tylenol.  Nothing would comfort him.  Finally, it kicked in.  Then he is now wide awake as I'm ready to crash... but I know there are more treatments and tests to be done still tonight.  More invasive tests, more blood to be drawn, meds to give, etc. etc.  So I hunker down for a looooong night. 

We've only just begun. 


Yes, Kaley is with us.  (She is a gift!  She was soooo excited to come back ... uh, she must have a boring life if this is fun! LOL) 

And me?  Somewhere between the lab test, the pulmonologist visit and driving to the hospital, I lost a filling in one of my teeth.  Thankfully it's one in back so only I will notice.  But it hurts.  And it's sharp and keeps cutting my tongue if I talk.  (Guess who won't be talking much the next few days?) 

Like I said, it's never dull around here. 

It's Complicated

I find Mother's Day to be a very complicated swirl of emotion kind of day.

Yearly, I find myself at the card aisle hoping to find a card that will say what I want. And always end up picking a card that says PART but certainly can't capture it all.  I mean, how can a cutsey verse or two of prose actually sum up one of the most important relationships that you will be entwined with forever? 

And it also reminds me of something my mother said.  The time had come for her mother to leave her earthly body and she was entrusted with picking out the casket.  Mom relayed to me that she walked around the place in a blur, eventually settling on a box.  But she said very clearly, "There is no box worthy of my mother." 

She went on to tell me that losing her mother was like this:  Ever since you were little, there was this huge oak tree in the backyard. You play under it, climb it, rely on it, enjoy it... then one day, it's just been uprooted and all that is left is this huge hole. 

That's been almost 10 years. 

At the time, I just listened.  Afterall, I have not lost a mother so I don't know.  I also only had two small children at the time and I was so in the thick of being a new mother that the whole concept of "Mother" was a bit daunting. (Who am I kidding ... it still is!)

So to all those missing your mother this year, I am sorry for the hole in your backyard, the hole that will always be there.  I am thinking of you. 

I used to look at mother's day and cry.  Afterall, I'd wanted to be a mother and it eluded us for many years.  Miscarriages.  Failed adoptions. Foster children that came and went.  It was complicated. 

Then I became a mother.  Again and again and again.

Now I think about my mother.  I think about my husband's mother.  These two ladies (friends by the way) are different in strengths and personalities but both share that same mother's heart.  The kind that would lift a semi off one of their kids and grandkids.  Both to be greatly admired. 

I also think about 4 birthmothers and a foster mother every mother's day. 

Mayola ... She birthed Jacob at home and then took him to the hospital to be adopted.  He was struggling to live so she isn't even sure he is still alive.  16 months later, she birthed Kaley and called the paramedics to take her.  She has no clue these two have found each other and are living together.  And I wonder ... does she ever think about them?  Does she know she made a great decision to place them for adoption? 

Cathy ... She birthed Sam and could only keep him for 10 days.  Choices she made prevented her from keeping him. And then 20 months later, she delivered Luke.  She was in jail at the time.  She got to hold him for a few hours and then he was gone.  She knows they are together.  She knows they are with us.  She hasn't seen Sam since he was 10 days old.  Hasn't seen Luke since he was 1.  I wonder what goes on in her mind every Mother's day.

Unknown ... Zoe's mother is somewhere in China.  We don't know her name.  We don't know the circumstances of why Zoe was found the way she was found (in a non-traditional way for Chinese abandonments).  We just know she was meant to be found.  Zoe recently asked about this birthmother and said she is dead.  I think it's her way of coping with the question of, "Why would someone abandon me?  She must be dead."  But I can't help but think of this mother.  She thinks her daughter is dead.  Ironically, she is named "Zoe" which means LIFE. 

Yima ... this is Zoe's foster mother.  At 11 months, this lady took Zoe in.  She loved for her and cared for her like her own.  I've had the chance to meet this woman twice now.  She is amazing.  She still calls herself Zoe's Mama.  I'm OK with that.  We all need all the Mama's we can get in this life. 

Rosa ... this is Manny's birthmother.  She is very, very young.  She kept him for 8 months before placing him for adoption due to health concerns.  She misses him a lot.  How do I know this?  She has contacted the adoption agency and asked if she could meet us and see him.  We have the meeting set up for Tuesday of this week.  I know many of you will be happy for the decision, but most of you will question if this is the right thing.  I'll have to write another blog on how we came to this very difficult decision, but we feel it is the best thing for everyone involved.  So I think of her mostly this year. 

I also reflect on the ladies who desperately want to be a mother but circumstances of life have not worked out that way.  Your arms are "empty" and there are no misspelled cards, sloppy kisses or pitter patter of little feet for you again this year.  There are no words that will comfort you.  I know, nothing comforted me. 

I reflect on those who have lost children.  Even if you still have other children, the loss of a child is so unspeakable that there are just no words.  Time doesn't heal the wound.  And so my prayers are with you. 

I also think about those people who, for whatever reason, are separated from their children.  Time, distance, idealogies, etc.  You want to hold them but you can't.  And as a mother, you feel incomplete because you can't BE THERE for them the way you want to. 

So Mother's day to some is about bad breakfast in bed.  Or cards.  Or flowers.  Or dinner out.  A special day to be recognized.  But to me, it's a very complicated day.   I love the cards and the flowers and not having to cook and being recognized.  I love that I am a mother.  I love that 365 days this is the hardest, most thankless, most impossible job in the world.  And some days I'm even up for the task and feel I do a good job.  But most days, I just struggle from the time they get up until I go to bed. 

Wondering.  Worrying. 

Is it enough?  Am I being a good mother?  Am I raising Godly children? 

And I never know.  Some days, I think it's working.  Other days I feel like I got hit by a tank. 

Another diaper. More dinner.  Dishes. Laundry to fold. Hair to cut.  Boo-boos to kiss. Hearts to mend. Lessons to teach. Praise to give. Displine to administer.  Toys to pick up. Medical decisions to make. 

And one day blurs into the next.  Always wondering if it's enough.  Praying for God to make up the difference (which on some days is 99% or more). 

One day, the rug is pulled out from under your feet and you look around to see if all your proverbial eggs in the nest are still OK.  Sometimes they're not.  And you just pick up and go on best you can. 

And in the middle of the heart wrenching chaos that is our lives some days, you hear a little voice say, "Mama" ... and you put on your proverbial cape and become MAMA again.  That little voice keeps you from spinning out of control on all the thoughts in your head, all the worries, all the doubts.  Because AT THIS MOMENT ... Someone needs me to be Mama. 

So carry on Mamas of the world.  You're doing a great job.  And no, it's not enough, but God WILL make up the difference.  Trust Him. 

He entrusted you with His most precious gifts in the world ... He has faith and confidence in you.  So carry on. 

And if you, like me, have mixed feelings about this day, it's OK... because it's complicated.  And that's OK too.

Sherlock Holmes

OK so I will try to break down what is going on with Manny currently.  Bottom line: We don't know.  But we have some "hints".  Eventually, this will become clear, but for now, I can only play Sherlock Holmes and follow the clues. 

Several things are going on simultaneously and they're probably all related. 

Looks like his bowels are starting to shut down. Bile is backing up into his stomach causing him to retch.

His labs are very concerning.  Last Monday the labs drawn were bad enough that when the docs saw them, they had a STAT re-draw.  Yesterday, the labs were drawn again.  I got the results today and they are worse. 

How bad?  I will try to describe.  In all of the hospitalizations, Manny's labs are always good to start with.  (For the really bad central line infection; for the gallbladder that ruptured, etc.)  They start good and then they start to decline.  Then they get to a certain low level and we start talking transfusion. 

THAT is where we are.  But this time ... we're not in the hospital.  We aren't on top of what is going on.  In fact, no one can even agree with what is going on.  After discussing today's labs with a couple of doctors, they are all on different pages. One wants to do watchful waiting, one wants to get a liver ultrasound asap, one wants to get us to Boston asap, one says I should get to the ER tonight. Clearly, this is not straight forward. Praying for wisdom (and healing, as always).

So what IS going on? 

These are a couple of the top contenders:
1. bone marrow dysfunction with low grade infection

2. intestinal failure or blockage

3. liver failure

 

So I'm continuing to be Sherlock Holmes and put things together. Trying to figure out this mystery.  Where is Dr. House when you need him?? LOL

 

What do we do in the meantime?  I'm watching him like a hawk.  (He's already in pain and crying a lot, and generally more grumpy than his usual self.)  My doctor will be faxing all our stuff to Boston tomorrow.  I will be getting an ultrasound of the liver ASAP (scheduled in the morning for the quickest they can get us in). And pray.  God has been faithful to keep us going one step at a time.  This is just another step.  And I will be faithful to walk this one out too. 

 

 

 

 

 

 

Hello Again

I know.  I know.  You've been wondering what the heck is going on with our lives.  Well, like I've said before, if I'm quiet for a while, we're busy living life. 

We've had some 'issues' with things (not related to Manny) that have distracted me from the blog.  (Understatement.) 

Now trying to summarize ...

Manny has been out of the hospital (except for the two days where we had a false positive) since February 27.  Can you believe it?   And as of tomorrow, May 7th, he will have had his broviac (central line) for 3 months without a line infection.  That is HUGE too. 

Now on to the not so good news.  His labs are causing concern as is his abdominal pain over the liver area.  It appears he's headed into liver distress/failure.  Last week I was very concerned about his labs.  But this week was worse. 

Every Monday he has his blood drawn.  Every Friday I get a copy of those.  This Friday, they arrived about 3:30 pm and I immediately went into grave concern.  I'd had them about 5 minutes (while I talked and prayed with Dan about them) when the home health nurse agency called and said the doctor was also very concerned and wanted a STAT CBC. 

What is going on?  His white blood cells tanked.  His red blood cells, hemoglobin and hematocrit are at dangerously low levels (some doctors would transfuse at these levels).  They didn't want to wait until Monday's labs to see.  If the new labs were the same or worse, they would hospitalize him. 

So Friday night, the nurse came by to do the blood draw (during a church meeting where we had about 15 people in our home nonetheless).  Saturday morning, the labs were back.  Each value was SLIGHTLY better.  Enough to let us stay out of the hospital.  (Phew!)

Meanwhile, he has some other concerning labs too.  All related to the liver.  Liver enzymes have greatly increased in the past 2 weeks.  Liver function is also being affected.  Why?  TPN is very toxic on the liver.  There have been adults that have been on TPN for a lifetime, but kid's livers aren't fully developed yet and they are more susceptible to the toxic effects. 

Even so, some kids can be on it for years with no real effects.  Manny was on it only 3 months before his gallbladder died.  Now the bullseye is on the liver. 

He also has periodic pain in the area of the liver. 

All not good signs. 

What can be done about it?  If he could get off TPN, this would all be over.  Effects tend to reverse themselves when the TPN stops.  But in his case, we haven't found a suitable alternative yet. 

Some kids have liver transplants.  Or even entire bowel/intenstine transplants.  Manny is not a candidate for this we are told. 

You can live without the gallbladder.  You cannot live without the liver. 

Other options?  Boston Children's hospital has a motility clinic that MIGHT be able to help restore his ability to eat.  (We're told if ANYONE can, it's them.)  Secondly, they might be able to help with an alternative to one of the components of the TPN.  Lipids are what "eat" the liver.  They are one of the few hospitals in the country that can prescribe this lipid alternative.  That might be an option for us. 

Therefore, last week I contacted them.  They told me what they needed to be registered.  I got right on that.  We certainly need a bit of favor as they are booking appointment 3-6 months from now... BUT ... they can expedite if necessary.  At this rate (if you're doing the math like I am), we don't have 6 months to wait.  He's teetering NOW. 

Any other concerns?  Yes.  The past two days he's had a low grade fever again.  (We have to get a blood culture at 100.4 and he's been between 100.1-3.)  He's also just "off" again.  And finally, he's starting to dig at his broviac site and saying "Owie" during these past 2 days too.  It actually got bad enough that he pulled the bandages off today at the park.  (Oh my he has wandering hands and he is persistent when something is not right.)  So I had to do a quick dressing change.  I was expecting to see some type of issue with the skin ... but there was NOTHING wrong with the skin.  Ugh.  So if he's pulling at the line and complaining about "owie", then it makes me wonder if there's something wrong INSIDE the line.  (Often a sign of an issue.) 

So where does this leave us?  Where we have always been ... needing MAJOR Divine intervention immediately.