chILD Foundation
http://www.child-foundation.com
This is a foundation promoting research to find a cure for the group of childhood and diffuse lung diseases that Luke's fell under. These are a collective group of rare lung diseases in children. Many have now been named since the work by the doctors and sites the foundation supports. I have met all of the doctors in the research network and could not find more passionate and compassionate people! The grandfather of chILD, Leland Fan, was the first to give us direction at age 6. The grandmother of chILD pathology, Claire Langston, was the first to say Luke was going to grow out of his lungs and most importantly introduce me to Luke's transplant pulmonologist Geoff Kurland in 2007. That connection brought us to Pittsburgh which in turn brought hope to us all.
Wings Flights of Hope
http://www.wingsflight.org
If it weren't for Joe and his pilots I'm not sure how we would have gotten to Pittsburgh both on his transplant night as well as for many emergency trips and appointments. All flights are completely free for families and all pilots are volunteers. No one is paid in this organization. Litterally on call 24/7 they are lifesavers. Luke's pilot Joe and his wife Diane are one in a million.
Children's Hospital of Pittsburgh
Www.chp.edu
Not only did this amazing hospital give us hope but they also gave Luke life through his double lung transplant. Donations go to uncovered medical expenses/free care fund as well as family/child life programs. They care for our whole family and have become family to us. Would not go anywhere else with Luke!
Children's Miracle Network
This organization raises millions of dollars a year to help support the children's hospitals in their network (over 150). Of course Childrens Hospital Pittsburgh is our hospital choice within the CMN network.
Ronald McDonald House Pittsburgh
It has been our home away from home many nights. It allows our family to be with Luke, it allows Luke to be right next door to the hospital when he is outpatient, and it helps financially.( The free meals and the room is much cheaper than a hotel!)
Those are the biggies in Luke's life. There are others but those are the ones who have made the greatest everyday impact . If you aren't sure who to give to on a giving Tuesday or at the end of the year, please consider one of those fine organizations. They are all registered non profits so your donations are tax deductible. I have been intimately involved with them and know they are all amazing and doing fantastic things for kids like Luke.
People often ask us what they can do to help. As a parent of a chronicly ill child we try to do it all... After all this is our normal. During crisis you are in the mode to do what has to be done. When crisis is over you would think it is all a big relief and things go smoothly... It is ironically not that way as you finally have a chance to be out if crisis mode and let your guard down. All that stress that built up in crisis mode (all the sleepless nights, the 6hr communtes, the poor eating, the no exercise, the watching your child suffer) now has a chance to bubble up to the surface. I was talking about this with another lung mom (and have heard this from many others) and this is a reoccurring theme in our (parents of special needs children) lives.
It has been one month that we have been out here in Pittsburgh. The family is split up, I have a once a week 6 hr communte each way to work, Luke's health has had many ups and more downs, we dont have a clear end in site, Glen and the kids have to go on with everyday life.. it is hard. But we all know this is the best for Luke and we only want what is best for him . We try to keep things as normal as possible for the rest of the kids but it isn't normal.
One thing that would relieve some stress at home is meals Monday through Friday. We had a couple people drop off meals over the past month, but Glen and I decided to make a more formal request. I signed up for Take Them a Meal.
http://www.takethemameal.com/meals.php?t=JXHS5863
If you go to that link it will take you directly to our page. If you go to the main site out family name is maeding and the password is Luke.
Thank you so much to those who have already signed up. With evening activities some nights are tight so this will be a great stress reduction. Glen, the boys and my dad will really appreciate this (my mom is out here with us since the little ones are here).
We pay 15.00 a night to stay at the Ronald McDonal House. Obviously much cheaper than a hotel and dinner is almost always provided. But after a more than one month stay it does add up. If anyone would like to pay for one night of our stay you can do so at Luke's COTA page by donating 15.00. All donations made there are tax deductible and 100% of the donations made in his name go to his account. We submit paid original receipts and they then reimburse us. This assures the money is going to transplant related expenses.
http://cota.donorpages.com/PatientOnlineDonation/COTAforLukeM/
For the medical update. After three days of nothing through his feeding tube, Luke was restarted on pedialyte through his intestine feeding tube. His belly was hurting off and on but today started draining green and having distention and pain. The feedings were stopped this evening. He is once again on all IV nutrition. Not sure if just taking a break tonight or for longer. We will talk about it tomorrow. Again it is either his intestines are very slow to wake up or there is a piece of scar tissue creating a problem
His kidney functions have continued to improve! That is a huge blessing. They are not back to his baseline yet but close.
Both of these issues are also likely tied to his lung transplant. Today when his belly was hurting he didn't want to tell me because he knows it will prolong his stay here. He became very angry and though I know it is his frustration it is all hard to hear. He has been on isolation this whole stay and he has had two negative tests for the antibiotic resistant bacteria he had in June. If this next one we sent tonight is negative he gets to come off isolation. That will be huge and help him emotionally a lot. He wants to go to the library so much and just walking around the hospital helps a lot. Doing school has been a real struggle since the fall. Feeling horrible, having years of more school missed than attended, feeling so different than other kids, and I'm sure teen hormones make it extra challenging.
Photos of the past few days
The three teenagers sitting and talking. It was late at night and they were laughing and having such a good time. That was definitely one of the memories to store away.It was so good to see them joking around and being regular teens. Luke really enjoyed having them here. Oh how they are growing up.
Gregory and Glen getting some soccer in in one of the hallways. Logan wiped out on the left from his match with Gregory prior to this one.
Luke loves his nephew and he is such a good distraction.
puzzles help pass time
One of the patient care techs brought this in for Luke. Today we took down his door and room Thanksgiving decorations and started putting up a Christmas theme.
this was too cute
The girls.. being their silly selves!
Once again types on my phone please excuse typos and mis-spellings.
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