Thursday, April 30, 2015

Our Chunky Monkey!

I am happy to report that Little Lukey Poo is almost 3 pounds heavier.  Since having the G-J tube placed about 7 weeks ago,  he went from 13 lbs. to 15 lbs. 11oz.  He's actually got chunk and fat rolls on his legs!  Yippee for a chunky Lukey!

As I type this message, Luke is in the process of getting his new G-J feeding tube.  Instead of a Popsicle stick wrapped with surgical tape, he will have what is called a Mic-Key button.  The button is about the size of my thumb and won't have a long tube attached at all times.  This means the chances of accidentally pulling on the chord or having it come out are VERY slim. Yeah!

Thank you for all your prayers!  We pray that today's surgery is successful, without complications and that our big guy can come home this afternoon.  We pray that Luke continues to gain weight and that he grows developmentally!!  As Addie would say, "Dear God, let Luke's brain and body grow big and strong!!" 

Love to you all!

:) The MN Juliens

Saturday, March 21, 2015

At Home

Thank you everyone for your prayers this past week.  It was a long 8 days and 7 nights that Luke spent in the hospital, and we are so thankful to have everyone back home!!  J-tube feedings have been going great.  Stefan and I are quickly learning the tricks of a successful tube feeding. 

We would appreciate continued prayers for Luke's tummy.  He has been vomiting at least 1 time a day, often 2 or 3 times.  I called the on-call GI doctor today and he said this is normal.  Because Luke does not have food in his belly, his stomach bile and saliva all mix together and are causing him real discomfort.  We were taught to vent or "air-out" his tummy 1 time a day (open his G-tube and just let it drain).  That is proving not to be enough.  Today I opened his G-tube and vented his tummy 3 times, and he still vomited 2 times.  He feels so much better once he is done, we just feel so bad that he is throwing up.  We pray that with time we will be able to figure out the perfect venting time that our little guy needs.

It was fun to have family time together!  This morning we did the Epilepsy walk through Upsher-Smith Labs at the MOA.  What a great cause, and what a blast!  The kids favorites were riding on the rides, walking, eating purple cupcakes, and being able to take home a HUGE bucket of Legos. 

Lots of love to you all,
The MN Juliens

Tuesday, March 17, 2015

Luke - Post surgery

Lukey had a successful  GJ-tube surgery yesterday.  He went in at 3:45pm and we finally got to see him around 6:15pm.  He was REALLY sleepy.  We stayed with him until around 9:00pm and went home to sleep and be with the kids.  That was a really hard decision, but we knew he was in good hands.

This morning at 7:00am, Stefan received a call that Luke had had a couple seizures overnight, one of them being a prolonged seizure.  They moved him to the PICU on 5th floor.  We hurriedly got ourselves ready, Grandpa came over to be with the kiddos, and we raced down to Children's.  We were really shaken and feeling a lot of anxiety and guilt over leaving him along overnight.  When we arrived, they had just transferred him and were trying to get him stable. 

Already this morning we've seen his new on-call doc, the GI doc gave the okay to start feeding, he had a chest x-ray (everything looks good), and the on-call neurologist is on her way.  Seizures have stopped, Praise GOD!!! They have given him an extra dose of seizure meds to put a stop to them, and so far it seems to help.

As far as Stefan and I can determine, we really believe that this influx in seizures overnight all stems from not having food for the past 42 hours.  In the past, he tends to have seizures when he is sick or throwing up his food.  We pray that once they start his feeding, seizures stop and are controlled with his regular dose of Keppra.

With this little jaunt down to the PICU, I'm assuming our stay at Children's has been increased.  I am thankful that I am off until next Tuesday, and pray that Stefan will be able to get a bit of work done this week.

Thank you again for all your prayers, texts, and visits!  When we have more info, we will update the blog again!  Love you all.

Monday, March 16, 2015

A Family Update

Hello Everyone!  It's about time, eh?  I can't believe it's been almost 6 months since our last update!  We've been enjoying the pleasures of family time, that's my excuse.  I think it's a good one.  :) 

Addie Rae - A sweet, spunky and precocious Kindergartener!  She is LOVING school, reading "chapter" books, and enjoys playing with friends at school.  She told Stefan the other day that her bus buddy asked her to marry her...  Oh the fun conversations you have with 6 year olds!  She is the best big sister, and absolutely adores mothering Luke and such a big help.  James and Addie love playing together, and he is ecstatic when she gets home from school every day!  She has now lost 3 teeth, and has the cutest smile ever. 

James Warren - A curious, active, and tender-hearted 4 year old.  He is continually reminding us that next year he gets to go to preschool, then the next year Kindergarten, and then he'll finally get to be as big as Addie.  His main goal in life!  James enjoys playing all types of sports, but his favorite lately has been baseball with dad.  They play countless hours of catch in the house and batting practice in the driveway.  He also loves playing with his buddies!

Luke Walter - aka Lukey Poo is now 16 months old!  His favorite things to do are cuddle, have us help him jump in our lap, read books with Addie, and hang out with his brother.  Last week, Luke sat up during PT.  A huge milestone for him!  He used all of his strength in his arms to balance his body in a sitting position!!  You can see the progression of pictures below.  

Luke is growing length wise and is now in 9 month clothing, but has continually struggled to gain weight since October.  He is still just 13 lbs. 

I took Luke down to Children's on Thursday to his Feeding Clinic appointment.  We had them do a swallow study and found that Luke aspirates the majority of his milk while bottle feeding.  He seems to do fine with spoon fed solids, but not liquids.  This finding confirmed A LOT of the issues he has had the past 3 months.  He has been on and off sick for what seems like forever!!

Because of the swallow study findings, we went to Children's Minneapolis ER right after the appointment.  We spent from 2-8pm in the waiting room and in the ER.  Luke was admitted that night to the 8th floor.  We were originally hoping they could put in an G-tube on Friday, rest over the weekend and go home on Sunday.  But nothing moves super fast in the hospital.  We ended up not even meeting with a doctor that Friday until 6pm.  Luke hadn't been able to eat or drink anything until 6pm, and was VERY hungry. 

He spent the weekend just hanging out in the hospital.  He was lucky to spend lots of quality snuggle time with friends and family over the weekend. 

His surgery is set for 3pm this afternoon.  He will receive what is a called GJ-Tube.  The G-Tube goes into the stomach and J-Tube goes into the small intestine.  They will experiment with his feeding the next couple days in the hospital to see if he is able to get bolus feedings (all the milk in one feeding) or continuous feedings (slow-drip throughout the night-time).  At this point, we are unsure what type of feedings Luke will need. Selfishly we pray that he is able to have bolus feedings, if not right now, eventually.  

We had been discussing G-tubes for quite some time now.  We originally thought it would be nice for Luke to have one for times that he is sick. He has a REALLY hard time keeping down food when he is sick (coughs make him gag, which consequently make him throw up).    I think the hardest part through all of this, was finding out that a G-tube was a necessity, not supplementary. 

We are thankful that modern medicine allows a way for our little guy to receive the nourishment he needs to grow.   We are thankful for the expertise of all the doctors and the kindness of all the nurses. He has stayed in the hospital on his own overnight, and I so appreciate the nurses' willingness to facetime and let me talk with Lukey before he goes to bed at night.  We are thankful to all our friends and family who have come to visit Luke or drop off meals/food.

The surgery itself takes only 30-45 minutes.  Please pray for the team of doctors, for Lukey, and for us.  Pray for peace, understanding, and comfort.  Thank you all for your continued support!  

We love you, 
The MN Juliens