Prayers needed for my grandson Luke <3

Tracy in WI · Post by **Tracy in WI** » Fri Jun 03, 2011 9:02 am

Okay, that picture just brought tears to my eyes. No little guy that beautiful should have to go through what he already has. Prayers will keep on for you and your entire family.

P-600 · Post by **P-600** » Sat Jun 04, 2011 6:58 pm

Thanks again so much for all of your prayers and support! BCH called Erica while she was driving me to the airport (and her husband was in Atlanta) he got a new job there. They plan on listing Luke when he comes home. The problem is he is too unstable to fly the last thing anyone wants is a medical emergency in the sky. She freaked! I felt awful that i had to leave her.
We all sorta knew this was coming but she does not want this for her son. Her husband is a bit in denial. Luke looks so good when you look at him minus the big belly but his blood tests aren't so great and this is the only option for him.
They told my daughter they want a full one year plus commitment from her to stay in Boston. She was
Pregnant with Luke when they moved to Tampa and now his job takes him to Atlanta. She feels like she is supposed to be in three different states right now.
Luke goes back to his GI on Tuesday and he will talk to Boston to see if it is okay for them to get on an airplane. They are also thinking about just taking the car and driving up they will definitely need the car up here.
Thanks again. I will definitely keep you up to date on what's going on with the little guy.

lprof · Post by **lprof** » Sun Jun 05, 2011 9:57 am

Reading your post, I think you know the journey ahead.
Stress in so many ways... caring thoughts to you and your family.

California Girl · Post by **California Girl** » Sun Jun 05, 2011 11:32 am

You are all still in my thoughts. Thanks for keeping us updated. All the very best to Luke.

Coden · Post by **Coden** » Mon Jun 06, 2011 8:07 am

That poor dear baby, Luke. It is not fair that he has to go through this. I wish there was something I could do. I send my best healing wishes possible and hope he is comfortable. I know he is glad to be home.

bdkane · Post by **bdkane** » Mon Jun 06, 2011 9:47 pm

So sad to hear of anyone dealing with such an illness - even tougher when it such a innocent baby, many thoughts and prayer for Little Luke and your family...

chicagoans · Post by **chicagoans** » Tue Jun 07, 2011 8:17 pm

Continuing thoughts and prayers for Luke and you and your family. I hope you all have some good news soon. He sounds like an amazing little guy.

P-600 · Post by **P-600** » Thu Jun 09, 2011 6:00 pm

Luke had another brief hospital stay this week. He appeared lethargic to my daughter and she brought him to the ER on the island they live on in Florida. They transferred Luke to his primary hospital in St. Pete 30 minutes away. He has a double ear infection, 102 fever and they also think his fluid in his belly is infected and/or he got an infection from the endoscopy. His white blood cell count was really high. He had some iv fluids and iv antibiotic and went home with some more antibiotics.
The plan is for them to return home on June 25th and see the liver team in Boston on june 27th where they will do more tests and another scope and list him. The doctor said he will be listed at a low to mid level number. She also said by his blood numbers they can tell he has decompensated liver cirrohsis.
Luke has B+ blood type (only 9 percent of the population has this blood type) so it could be a really long wait or a short wait depending on the circumstances.
I hope everyone considers being an organ donor! I always have been but now I know how important it truly is.

flip-flop · Post by **flip-flop** » Wed Jun 15, 2011 3:55 pm

How's Luke doing? HOpefully much better!!

P-600 · Post by **P-600** » Wed Jun 15, 2011 8:35 pm

He is finally stable enough to fly so my daughter is coming home with Luke and his big sister Olivia in the morning! His Dr.s at Childrens want to see him Friday morning for blood work, an appt. with the nutritionist, a GI appointment, ending with a ultrasound in the early afternoon. She was originally supposed to see them on the 27th but were able to see him sooner. His belly is getting bigger again. His doctor said that is to be expected.
I'll keep you posted after his appointments on Friday. He's been happy and started saying Mama this week, he puts up his hands for my daughter to hold him! Too cute!!
Now to teach him to say Meme!

linne · Post by **linne** » Thu Jun 16, 2011 2:07 am

Good news. Best wishes for his recovery!

Linne

traveler22 · Post by **traveler22** » Thu Jun 16, 2011 4:10 am

Sending prayers your way.

P-600 · Post by **P-600** » Tue Jun 28, 2011 4:31 am

Luke has been listed!

BCH put him on the UNOS liver transplant list last evening. He has a PELD score of
-2 but they are appealing to UNOS for exception points because of his recent bleeds. So he could possibly be as high as an 8 or 10 soon.

His doctors put him on Lasix another diuretic that works a different area of the kidneys and in three days he lost 1.5 lbs of fluid from his belly. It is starting to creep back now though but on the good side of his ascites the doctor's told us yesterday that because his belly is so big, he can actually get a larger liver or piece of a liver and it will make their jobs a little easier having more room to work in there.

His blood test today showed that he is losing blood again. He is having another more invasive endoscopy on Friday and if his blood work on Wednesday isn't better they will admit him and give him another blood transfusion prior to that surgery just to be safe.

We are also hoping that his rare B+ blood type will help him get 'the call' sooner. I am FB friends with another woman who's baby needs a liver transplant and BCH has already turned down two livers because they are not the "perfect liver" so I know they are going to get Luke the perfect liver at just the right time.

Thank you for all your continued prayers and support!

Coden · Post by **Coden** » Tue Jun 28, 2011 8:50 am

Thank you for the update on precious Luke. I send my best wishes that all goes smoothly with his endoscopy on Friday and ultimately with his transplant. XOXO

P-600 · Post by **P-600** » Wed Jul 06, 2011 8:48 pm

Luke is back in the hospital. He had a scope last Friday which they were trying to band his varices but they couldn't fit the scope down his throat so the schleroed some veins. After that procedure he has not been quite right. He hasn't had any energy, seems to be in A LOT of pain, wouldn't eat etc. Yesterday he spiked a fever and my daughter and her husband took him to Boston. They drained his belly or took a sample (I'm not sure) of his ascites fluid. Results in a couple days.
He is still in so much pain so they put him on Morphine every 2 hours but they now think he is having a "reaction" to it. His blood is down today from 7 last night to 6.2 today. He still has a fever, his ammonia is high causing confusion, his white blood cell count is 23,000 and tonight they did an ultrasound and he has portal vein thrombosis which is basically a blood clot in the main vein to his liver. Minimal amounts of blood are actually traveling through his liver right now. This is not causing his fever though so they are still unsure what is going on there.When it is time for his transplant that vein will not work and they will have to use another vein.
Tomorrow he is having a cat scan so his doc's can get make a "roadmap" for his eventual transplant. They are looking for some exception points since he is at -2 right now.
Wanted to let you all know what is going on with the little man. Thanks for keeping him in your thoughts and prayers!!

Here is a pic of Luke taken last week during his last hospital visit as you can see he was in much better spirits.

usvi-on-line

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Prayers needed for my grandson Luke <3