Tuesday, June 23, 2015

Celebrating Big Sis



See that beauty? She's about to graduate from Kindergarten, and I could not possibly be more proud of her.  Georgia, if you ever get to read this blog - you are my sunshine, the light of  my world - I love you so much.  Please don't ever change for the world - you are awesome the way you are.

Jake is completely in love with his big sis.  He follows her around and asks for "sissy" when she is not there...and so often I see him trying to do the things she does.  I'm so glad they have each other.



In regards to my last post, the nose swab came back positive for human metapneumovirus, but by that time Jake had beaten it.  He's so tough and strong - his half a heart does not hold him back!  Shortly after that Georgia came down with all the same symptoms, but of course didn't need hospitalization, and it seems like for the moment we are in the clear in our house.  I probably shouldn't tempt fate there -- knock on wood.

Another Heart Mom shared a verse today that I needed to hear -- sometimes this life is completely overwhelming. Sometimes I just forget to wait on the Lord, and spend days, or weeks plowing straight through - until it becomes too much.  And eventually it always becomes too much.

Psalm 27:14King James Version (KJV)

14 Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.


The thing is - when I pack my diaper bag to leave the house, I need to pack a G Tube replacement kit, a feeding pump, feed bag filled with special formula and syringes for flushing....For some reason I was struck by that this week.  It's not "normal" but it is my norm.  My diaper bag is HUGE :) Today I feel fine about it, but some days it just strikes me as incredibly unfair -- for Jake.  On the outside he's Mr. Perfect but there is so much maintenance that goes on behind the scenes.  I find myself praying daily for guidance, strength and acceptance -- especially when the feeding pump keeps kinking up and it takes 2 hours to get 300 ml into Jake, or when the feeding tube won't connect correctly and I find Jake standing in a puddle of stomach contents crying because his socks are wet when I've only left the room for 2 minutes.  Does that make me ungrateful, feeling this way sometimes? I hope not.  Because I know how blessed I am.  I wouldn't trade my reality for anyone else's.  I am blessed and my cup is so full.



The last two weigh in's Jake has lost weight, of course...he's weighing in again on Friday but I'm not holding my breath for a gain.  Two weeks ago we were faced with the reality that Jake needs to gain - we have to let go of this pressure we have to get him to eat and drink, and just feed him ourselves and let him gain.  So that's what we have been doing.  Jake is on a set schedule, so at 10 am, 2 pm, 6 pm and 11 pm regardless of where we are or what we are doing, the feeding pump goes on his back.  I've been setting up feeds on the side of the TCH, in parking lots, random driveways, etc.  I keep thinking that his legs look a little fuller - please let it be reality not wishful thinking.



I need to send a huge shout out to Little Bay Island's Home League group -- When I wrote my post about the costs of maintaining Jake's feeding tube they all chipped in and sent Jake a check.  It's so thoughtful, and self-less and amazing.  The amount goes right into Jake's account, and will be used when we need to buy supplies once again.  Thank you.  Seriously.  From the bottom of my heart.  



One huge development in the recent weeks...Jake now brushes his teeth.  Any parent of a child who is tube fed will understand -- Jake has never let me brush his teeth, or been willing to brush them himself, and because of the possiblity of developing an oral aversion we were advised not too push him.  But with coaxing, and encouragement from Big Sis, he now does it himself with a touch up from me afterwards.  I'm so proud.




Thought I'd share a couple of pics from today with you - it was cold outside so we painted this afternoon.  I just love that expression of concentration on Jake's face.  The little doll.






After breakfast Jake vomited his feed.  Unfortunately that's not an unusual occurrence and he went straight into the tub after.  Here is is just after I took him out and asked him to tell me what a monkey says....The cuteness is too much.







Saturday, June 6, 2015

When life gives you lemons...go to the Janeway :)

June has not been an easy month for Jake so far...and we're only 6 days in.  Jake gave us another reminder of how precious our "normal" days are - the days with no hospital involvement.  The bug that Jake has been struggling with for a couple of weeks intensified on Thursday/Friday, and led to Jake being taken to Emerge because of low oxygen saturations.  Jake always has low oxygen saturation (100 is normal.  Jake lies in 80-90 range most days), but when he gets sick they can really dip and then he needs oxygen assistance for a little while.  On Thursday night they dipped to 68-72, then when we were ready to bring him to emerge they recovered into 78 range.  Friday they dipped again - 66-74 range, so I called cardiology then packed him up and went to Emerge.  After 5 hours of trying various things to see if they would help, iv, bloodwork, nose swab, and blow by oxygen....Jake was admitted to the Janeway for observation overnight.





After some oxygen, and IV antibiotics Jake seemed to rally - and held his own for the rest of the night with no oxygen required.  That meant he could go home today! It was his shortest hospitalization to date, and I'm so thankful for that! Thanks so much to Poppa for all his help - it's hard being in two places at once when Georgia can't be in Emerge or the Isolation area with Jake.  We couldn't have managed it without you.  Jake was so happy when his Poppa came in - with new dinkies for him to play with, of course.  He fell asleep in his Poppa's arms soon after being admitted.

Jake has a follow up on Tuesday to get his blood levels rechecked (both white blood cells and platelets were low), and follow up with the admitting pediatrician.  He's on stronger antibiotics here at home, because we still don't know if it's viral or bacterial.

As you can see...Jake is happy to be home :)



It's funny the moments that stick in your mind...since we've been home I  keep having this flashback.  When the nurses were attempting Jake's IV (Jake is an extremely difficult poke), I was trying to comfort him while holding his arm in place.  It was too hard to look at his face, so I looked down at the table and noticed that his ear was filled with tears.  It was a pool of tears - my heart broke.

The nurses always say it's harder on the Mom than on the kid, but I don't know.  I think in the case of a kid like Jake who is always at the hospital and frequently being poked and prodded - it's harder on them.  My prayers lately have been focusing on Jake's mental health and strength - I don't want him to be a child who fears everything, who expects the world to hurt him.  That's not right.

Tonight as I try to calm my mind to go to sleep, I'm rewriting this verse for Jacob.  And for Me.  And for Georgia and Jon.

Psalm 18:2New International Version (NIV)

The Lord is my rock, my fortress and my deliverer;
    my God is my rock, in whom I take refuge,
    my shield[a] and the horn[b] of my salvation, my stronghold.


The Lord is Jacob's Rock, Jacob's Fortress and Jacob's Deliverer;
my God is Jacob's rock, in whom Jacob takes refuge,
Jacob's shield, and the horn of his salvation, his stronghold.


The Janeway telethon is currently underway, and that hospital has played a crucial part in Jake's journey.  Cardiology, Dietician, Occupational Therapy, Audiology, Gastrointestional, Perinatal, X Ray and Cat Scan, Emerge....I don't know where Jake would be without them.  Especially Dr. T - we are so thankful for you.  

To make a donation to the Janeway, click here.  

Check out this year's theme song...Bounce Back...and be warned...I cried...


Thursday, June 4, 2015

Oh dear...

Our excitement over Jake's smaller nutriport feeding tube was short lived...The Nutriport was excellent in that it didn't make Jake's skin sore and it was small  and unobtrusive but...it has now malfunctioned twice - the balloon keeps bursting, and then the tube is falls out. When it comes out this is what Jake's belly looks like - and yes, that is milk in his stomach that you are seeing...




 The first Nutriport lasted 2 weeks to the day before falling out, and we were unable to reinsert it at home and then the doctors were unable to reinsert it at the Janeway.  Jake was throughly traumatized by all the pain from each attempt - it was unbearable.  He cried himself to sleep while still in the examination room, and then would shudder and cry each time I reached towards his belly after that.  Jake went 24 hours with a foley catheter in his stoma before the swelling went down enough that Dr. P was able to get it back in.  Now, 6 days later - the balloon burst again.  This time we were able to get the surgical g tube in place here at home with minimal pain for Jake.  Now, we have to buy new tubes to have on hand in chase the balloon inside the surgical tube also breaks.  We are not buying another Nutriport though - they run at $185 plus tax and that cannot be maintained at several changes each month.  We are considering trying the Mic Key although its very similar to the Nutriport, but for now we're just ordering one of the Mic G tubes (the long surgical one that Jake was first given when he got his G Tube), and waiting to hear whether our insurance company will help with the cost associated with the G Tube.  Jon called today to check on that and the company rep told him that she had no idea if G Tubes were covered, but none of the 3 kinds Jon  listed out for her were in their system.  That doesn't sound promising.  Jon was told to compose a letter, outlining the need for the G Tube and accessories, and enclose the prescription.  Upon reciept of that letter, the company will then determine if they can help us out with cost.  So, a answer is a little far away right now, but it is coming.  Jake had a good look at the broken feeding tubes today...




In the meantime, my priority is keeping Jake happy and pain free - and if he needs the larger tube to make this possible, then he'll keep the larger tube.  

Since my last post Jake has gained a pound! Really, he gained a pound and 5 ounces at one weigh in but a week later had lost the 5 ounces so it was exactly a pound of gain.  He hit 23 lbs 0 oz on the button.  Tomorrow is weigh in day again, I'm hoping for another gain, no matter how small!  

In even better news, we learned that Jake's pacemaker placement is intra abdominal - meaning that even though it looks like it could come through his skin, it is actually held in place by a pocket of muscle that was hollowed out of his stomach.  It was an enormous relief to read these words in an email from Jake's cardiologist.

Jake has been sick for a couple of weeks, and the cough seemed to worsen this week with the fever reappearing so he is now on antibiotics - but he has not been himself at all.  Here he is napping, while having a snack and sleeping off a temperature.  Poor little mite.


Note, that is the Nutriport in the picture above - Jake's current Mic - G feeding tube does not look like that!

Thank you so much to everyone who rallied around Jake last week he was going through the painful tube change process.  It is so appreciated, and such a comfort.  If anyone does not believe in the power of prayer, they need to spend a week or two in my life....