there is a possibility that these are also three areas that didn't have optimal blood flow during surgery and had injury. It would be very odd to have it happen in three areas but Luke like to do thibgs rare and odd. For now it means IV nutrition. That means almost surely no Christmas dinner which is very hard for Luke to think about especially after not being able to eat Thanksgiving dinner.
We continue to try to drip a teaspoon an hour into his intestine feeding tube but after about two days he doesn't tolerate it. He is still allowed to have liquids that drain out of his stomach tube but he isn't drinking a whwhole lot which tells me his belly feels bad. This AM his feeding had to be stopped again because of belly pain. A little bit of food would help his body not get stressed (mostly his liver). Over being on IV nutrition only. It is likely this is not going to get better quickly.
His kidneys continue to need lots of fluid via IV to keep them happy. Hie needs talmost twice the amount he should need in IV fluids to keep his labs good. We tried to turn down his fluids and his kidneys did not like it.
Good news... His PFTs were the best ever likely due to the fact we fixed his reflux. So though there has been negative fallout from the surgery, the reason we did it (to protect his lungs) seems to have been successful.
As we forsee staying through Christmas, we decided to bring Christmas to Luke. The girls decorated the tree with their own decorations as soon as it was set up.
This is Luke doing his best PFTs ever
Kyara waiting for Luke during his PFTs
The girls continued to add decorations
Kyara doing school
Luke has enjoyed board games
Luke decided he needed to make it mire of his tree (a bit crushing to the girls). Each day for his advent calendar countdown to Christmas he opens an ornament and outs it on the tree.
Luke doing school
Santa came by to take pictures, give some goodies, and let the kids know he had a special GPS that tells him where each child is (so if they are in the hospital he knows where to find them).
Makayla was so shy!
He had a special gift of a signed football from two Steelers who dropped by one day.
Last week a fraternity from Thiel College walked from the college to Childrens Hospital (100 miles) to raise money for Childrens Free Care fund. Last year they raised 30000.00! They all with cans so people can give them donations along the way. We had the honor of meeting them when they arrived and sharing how Childrens has impacted our lives. They heard about Luke and brought him a special Captain America action figure and gave him a signed shirt. What a special way for them to give back.
Luke receiving an ornament for his tree
Different groups are coming to Ronald McDonald house decorating a floor. This is how our floor was decorated. It is wonderful stepping off the elevator seeing this on our floor.
Three families came and made cookies with the kids. This was great fun!
One day Luke decorated his tree with his almost 2000 beads of courage. The tree tipped over under the weight.
Of course we have to have some fun!!
This is Kim. She is his Patient Care Tech and we have known her for years.. she always makes Luke laugh. They swapped wigs one night!
Luke and his transplant pulmonologist.
Another Patient Care Tech brought Luke this hat.
Making ornaments
doing puzzles
Drags to check his spine because of his weak bones and history of vertebrae fractures
To see his neck bones they had him open his mouth.. we laughed about this one!
Smoke medicine time
One day Makayla came over to Luke s room like this.. guess she wanted to be a cat (she did this all by herself a couple of days aafter watching the Broadway show Cats on TV).. then she turned around.. guess her outfit was complete with a tail!
hmmm. Wonder why Makayla doesn't gain weight.. she is wearing more of the food than eating it!
Every year since 1970 the Penguins team comes and givisits all of the children in the hospital and gives them a toy (this year a build a bear penguin hockey player). The team bubucame by this week
bubbles!
Doing school... Notice the balloons to the left floating downward... A sign we have been there a long time
Ho ho ho
Being on isolation is tough for Luke. It means he can't go to the library, group activities in the atrium, or the larger playroom. Friday evening his Child Life therapist decided to have BINGO in the hallway so all the kids on isolation could sit in their doorways (some required masks) and play BINGO. Luke LOVED this.
BINGO!
I came home to work and since I was working on a Saturday I brought the girls. They have not been home in about 6 weeks. They were very excited to go home for the weekend. They are not ones who usually like to go to sleep (it takes lots of reminders it is time to quiet down). I thought it was quiet after going through the mail. When I went upstairs they were both sleeping in their beds. I think they were so happy to be back in their beds they put themselves to sleep!
Huge thank yous to all who have taken Glen, the 3 older kids and my Dad a meal in the past two weeks. This has been a HUGE help! The meal schedule is found here:
http://www.takethemameal.com/meals.php?t=JXHS5863
Recipient name is Maeding and password is Luke if you go to the main page at www.takethemameal.com
It was so incredibly helpful for Glen to not have to worry about making dinner when arriving home from work. During the week the big kids have lots of evening activities on different days. Thank you so much to those who have picked up or dropped off some of the kids at their activities. That has also been a huge help! Some nights Glen needs to literally split himself in two! And some nights even with my dad and Glen driving it is very tight getting everyone where they need to be. Of course December has been a month of medical appointments which have also been very time consuming back home.
Speaking of I am so thankful Childrens will see our other kids when we are there a while. Kyara had to have some dental work done and Elijah needed to see ENT. Children's is so great with understanding and getting them seen or cared for.
For those who have donated towards our Ronald McDonald house stay by adding funds to Luke's COTA account for transplant related expenses we are so thankful. If anyone sent a check or is sending one to COTA remember for write Luke M in the memo or if making an online donation make sure it is designated for Luke (his account gets 100% of funds donated in his name. We submit receipts and they directly deposit the reimbursement funds into our bank account). 100% of your donation is tax deductible.
http://cota.donorpages.com/PatientOnlineDonation/COTAforLukeM/
If you mail anything to Luke please use the Ronald McDonald House address. We are still waiting for a card Alex mailed two weeks ago to the hospital for Luke. The mail room is like the black hole. At RMH we get things as we would at home (the same day delivered).
Luke Maeding room 1104
Ronald McDonald House
451 44th st
Pittsburgh, PA 15201
A lot of people have asked me for the above info and hopefully it helps to have it all in one place.
Glen and I also want to thank everyone for their thoughts and prayers. There are a lot of unknowns with Likes kidneys and intestines in the future. Please continue to pray for their healing, knowledge for the doctors to know how to treat the issues, peace in his heart, and strength for us all.
While I am gone Luke's night nurses facilitate Santa leaving ornaments with a little note on Luke's tree. He gets so excited about them. I am so thankful for all the nurses who care for him both the medical care they provide as well as the emotional care... That is why nurses are so incredibly important!
No comments:
Post a Comment