Flying to Stanford is going to be extremely difficult and costly with Owen's oxygen. If we use the airline's oxygen (which is required to fly with them), they charge an additional $150 each way... yikes... he doesn't even have his own seat! Another airline said we can use an oxygen concentrator, but of course insurance won't pay for it and it's $80/day to rent. With airline ticket expenses for the three of us, it would cost around $600 for us to fly roundtrip. That doesn't include rental car, OR arranging for oxygen delivery at the airport when we arrive. I have a few calls into angelflights and miracleflights, but am not holding out too much hope. Something about oxygen on a non-compressed airline is a "no-no". When all else fails, we drive and make it a 12 hour road trip.
The social worker kept using the word one-way and your "stay" may be long. I then said "we're coming home right??" She gasped as if it were obvious that we were staying and said "by the looks of things, the cardiologists sounded as if they might keep Owen here!" I'm not worried yet, because they haven't seen Owen... only his inner workings. I am still going to prepare myself that we may have to stay.
We go back to cardiology in the morning. Dr. Stock wants to see Owen again, he just gets worried about him. We increased all his meds and with it came increased puking. I will change his NG tube tonight, but I'm pretty sure that isn't the issue. Owen still only eats a bite or two a day lately...don't even think about drinking... poor guy is just too tired to eat! We skipped physical therapy today because he was falling asleep in the car on the way... he is tired 70% of the time. The rest of the time he just plays quietly. It's hard to watch him exhaust so easily. On another note... it reached 102 today and it actually wasn't too bad. It's going to be a good summer! Unless of course we're in Palo Alto, CA.
15 comments:
Oh little Owen, I am sad to hear you are tired lately. I have been too with bad allergies :(
If you come to San Francisco area will you let people know where they can come to meet this little guy and his wonderful family? I am in Walnut Creek and would love to meet you and if possible help any way I can to make your stay more enjoyable and less stressful. (even if it's just bringing you some lunch)
Please let me know
cicidoodle@hotmail.com.
In the meantime I will surely keep him in my daily prayers. and you too Andrea, as this is harder on you than anyone, as a mom and a worrier I know for sure.
Hey... if you won't hold onto hope of miracle flights or angel flights... I WILL!!! I know that one of the two of them will PURCHASE your commercial flight if they cannot fly you privately! Maybe that would work out for you guys! I know this because some friends of ours fly from SC to Cincy all the time!
Sending many hugs and prayers:)
If Owen came to see me, I wouldn't let him go home, but that is just because he's so stinkin' cute. Surely they won't keep him just because he's so cute-ha.
I hope your appointment goes well tomorrow, fingers crossed, prayers said.
Oh I hope he gets some energy back very soon!!!! You would think that the airlines would be alittle more accomodating and understanding when it comes to sick babies!!!!!! What is wrong with those people?
Praying for all of you!!!!
I'm so happy to have the chance to pray for Owen. I have a 5 year old with hlhs and know some of what you're going through. Keep hope in the angel flight! We flew with them twice WITH oxygen from Alabama to Wisconsin.. a long flight.
We think of you guys often. It's so sad to think of that sweet little boy tiring so easily.
His smile is so amazing. His spirit is so amazing. Sigh. I just love him to pieces!!
We will keep you guys in our thoughts and prayers that things go smoothly and everything works out just the way you need it to.
((HUGS))
Wow, your plate is so full, but you still have such a geat outlook! Your cute family are always in our prayers.
Placed Owen on the prayer role today. He is so sweet. I am excited to see this little man and actually meet you. Let me know how we can help when you find out more information.
Wow. So much to plan. I've heard good things about San Francisco. I hope it's a "quick" stay.
just fyi...it was 101 in the palo alto area today. (not that temperature is the reason your time here wouldn't be wonderful, i know, just saying...)
Hi there came across your blog from another blog and thought I would let you know about a family from here in Alaska who was at Stanford waiting for and received a heart for their son. While there their youngest and oldest daughters plus Shawn attended the school at the hospital.
Since the username and password for their care page are on a lot of Alaska sites I figure I can put it here for you.
http://thestatus.com/index.cfm?fa=patient_login&sid=0
PatientID: Stockwell
Password: plum-vanilla
They speak not only about thier sons condition but also about the area, Ronald McDonald house, the doctors, school and hospital itself.
I wish you all the best!
Oh, my little man. I'm so very sorry to hear that you are so tired. I hope we all hear positive reports from your appointment!!
I keep you in my thoughts and prayers daily! I wish there was something I could do. Know that we love you and your sweet family!
Kerri, Mel, McCanless and Mary Clare
So glad things seem to be falling into place at Stanford. Not sure if I mentioned it's my Alma Mater. I was trying to find an article I clipped this fall about the brand-new state of the art cardiology stuff there--very impressive and I'm glad Owen will benefit. My godmother also spent thousands of hours volunteering for the LPCH Women's Auxiliary so I think it's neat that some of the $$ she raised will benefit Owen. That Bay Area climate will be a welcome respite, as will the milkshakes at the Peninsula Creamery in the Stanford Shopping Center--an easy walk from the hospital.
Peace and comfort,
RG
That's an awesome toy! I'm sorry that Owen might end up stuck in San Fran but I'm so excited for him to get himself a heart - wherever it comes from!
We hope he responds well to all the changes in his meds. Sounds like the car trip is the way to go.
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