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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, June 30, 2014

Catch up overhaul

It seems like I just can't stay ahead of anything these days. I know how important many things are, I also know how many wonderful supportive friends and family we have who want to know how we are doing.
We are doing Great!!!
Oh, you want to know the details??? alright, sit a while and I will share.
Jeff and I were asked to speak at a youth conference. It was an amazing experience to be in the presence of such amazing young people and enjoy their light and life. I however, am a chicken and had a beautiful and elegant talk prepared... then I blubbered through and muddled my words and prayed like crazy that they felt the spirit in some fashion. Jeff did amazing as always. I am in awe of his composure and his ability to invite the spirit. He has such a way of connecting with those he shares with. Maybe it has something to do with serving a full time LDS mission. Or maybe it has something to do with being the Bishop? He seems to have lots of training and at speaking. I just wanted to throw up ten times. The best part was driving up together and chatting. We love being together and there is so much chaos in our household, quiet time to visit doesn't happen very often. It was also nice because it was our anniversary week. It is hard to believe this.. but we have been married for 13 years. I am so thankful to my wonderful husband for everything that he does, pride doesn't even begin to scratch the surface of things I feel for him. In fact I still call him my boyfriend, because he treats me as sweetly as he did when we were dating and I was the center of the world.

That weekend Ry and Eden danced in the year end recital. They both looked and did fabulous. Eden stole the show. She knows every word and move. She cracks me up. I am sure this is one of her talents. Ryleigh did fantastic as well. She usually has terrible stage fright but still did great. The girls both earned their trophies (which Eden insisted on sleeping with the first night).







 Fathers day was a fantastic day to celebrate Jeff. We made him french toast for breakfast and tried to treat him to a day full of hugs and kisses. We got him a new grill. He has been wishing on this for some time, when our old grill died.
photo curtesy of Eden

On Monday I noticed that the Heparin Ball that continuously goes with Alex's Milranone
to keep his lines open wasn't getting any smaller. It is pressurized and slowly administers the medication. It is such a small flow that the Hep ball lasts 5 days. The darn thing malfunctioned in some way and it wasn't giving the medication and it wasn't keeping the line open.. which meant I called our awesome Home Health nurse Dillan to come to my rescue. When that didn't work we both decided I better run Gator up to PCH to have them look at it and hopefully save his line. I had called on the way there and let the on-call Transplant nurse know, we were on our way. I guess ED doesn't usually deal with PICC and Milranone because that is usually done in the RTU. RTU was super busy and packed full so we got to hang with the ED team. They loved us!! We were chill and laughing and telling jokes and we were thrilled that a little TPA later meant we were on our way home. Clear and saved line. The best part about it... Are you ready for this??? We got done at 11:50 P.M.
 That meant we could go to Walmart and buy the Lego Movie!!! Gator had been counting down the days...
He watched it three times the next day!


We have been hanging out in clinics, managing home life pretty great. I have come up with a daily schedule that includes reading and school. Some days we get to do it all. Somedays we don't get to much. We are learning how to balance it. Alex's teacher has been over for school. We still haven't nailed down what we are doing next year. I don't know how to handle it all yet. I am afraid I am not a very good teacher. I have to stop everything, sit with Alex and help him. I can't give him an assignment, tell him to work on it and leave to accomplish another task. It is very difficult for a multitask-er to focus on one thing. Plus it seems like the little girls need me right when I sit down to help him. We do a lot of reading and floor games while he works. When Ry gets home we want to play and be crazy so that isn't a good time. When the baby naps I have 40 other things to accomplish that I can't do while she is awake so that is no good. Somehow we will find the balance.

Jeff's brother Ryan, wife Alisha and Grace came into town and we have been playing with them. We even had family pictures done. Thanks to the amazing Angie for your work.



As most of you know, on the 21st was the big fundraiser for Alex's healthy heart. It was an incredible day. We want to thank everyone who came, who spread the word, who worked a million hours, who prayed for us and who helped in whatever capacity you did. I don't even have words to describe how it felt. We were surrounded by so much love. The air was thick with it. Bright and Early there was a 5k run and then a 1mile fun run. Jeff ran and pushed Gator. He was accompanied by our neighbor Kyle Hansen and Jeff's brother Ryan. They took turns pushing Gator. The very last bit of the run, Alex got out and finished with his dad. It was a huge moment for me to see my guys accomplish this run together flanked by men who love him so much. 




Together we did the mile...
I was so amazed with every runner out there. We even had the Mayor of West Jordan and his sweet wife. They were impressive runners and finished before daddy and Gator so we only have a picture with the Homer girls. The Mayor has such a huge heart and gave me everything he had in his wallet, and expressed he wished he had more to give. How absolutely generous of someone who knew so little about us but wanted to help. To top it all off, we know he must be extremely busy with his city obligations, and his wife had only met Alex one other time at the hospital but was so sweet to him. He never remembers anyone while there. I think he might block out somethings he doesn't want to relive. She happen to meet him on the clogged PICC, dumb bath mommy day.  But I remember her, and I am thankful that she took the time to come to the aid of someone in her community.


After that Alex had pre-carnival playtime and he used it to ride the trike bikes and go in the photo booth and get snow cones. I was amazed and humbled by the organization and expertise of each booth.  Everything was amazing. Things that could have been a problem for the committee resolved and the silent auction, boutique and the un-bake sale were in full swing. Gator especially loved the dunk tank. He spent most of his time trying to put people in water. A big thanks to all the dunk-ies.
This is one of our hospital buddies. Cody works in the lab at PCH. We call him and our friend Chelsea "One poke wonders" 
Dunk a doctor!! Chris Gee is a invaluable resource. I even called him in the middle of the night. He is such a great friend! 



Alex has the neatest Primary teachers EVER!!! Brother Jones brought his "toys" so we could play.
Sister Jones thought of writing on the bucket...



was worried that Gator was getting sick and would try and make him take breaks often and keep him hydrated. Some of the breaks were successful and others..... weeeeellllll, not so much.


The grandparents took care of MayLee for naps and care.. And super Auntie Ave was Eden's personal carnival buddy. I didn't have to worry about the two little girlies one bit. The best big cousin in the world held my little Eden after she crashed! 
enjoyed talking to everyone and wished I had the time to talk and thank every person. More pictures to come! 
We want to express our gratitude and want everyone to know that it was a huge success. Our medical financial worries have subsided and we are so grateful to everyone for giving us this gift. I bawl every single time I think about it. It is such relief. It is one thing we can remove from the hardship and just focus on the kids and getting the best care possible. YOU did that for us!!! With our WHOLE hearts... THANK YOU!
Especially to Marti and Nic. They are the masterminds behind it all and have recruited the most incredible team of helpers. We love that team. We are thankful to them for their selfless love and want them to know that we will do everything we can to pay it forward.

Most of you know that our friends have a little boy that is in the same boat as Gator. Teagan is just one year younger, with HLHS and is also currently waiting for his healthy heart. Teagan is even similar in that he is home on milranone and has the same blood type as Gator. The boys have bonded in such a special way. They both believe that their buddy is sicker and that the other gets their healthy heart first. We pray every day for our Teag to have someone say "Yes" to organ donation. It is amazing how when these guys are together they laugh and giggle and enjoy each other so much. He supported Alex at his carnival when he had been home from the hospital one day.. His mom Brytten ran the 5k.. 

 Teagan's Benefit concert was Monday. The very talented and amazing Transplant recipient Paul Cardall played. It was fantastic! Alex loved listening to his music and turned to me and said..."man he is pretty good at the piano!" I agree. Their family was so amazing to share Teags spotlight with Alex. 


Miss Jen and her husband (who is super cool) came to support the boys at both events.. I caught a picture of Alex and her together! 
Sibs are incredible! 

We have also been to Grandma and Grandpa Clawson's for birthdays and belated Fathers day. We love spending time with everyone. The weeks fly by. I wonder if I even accomplish anything sometimes. My mom has been a huge blessing to us by taking the little girls on clinic days. This means that they are home for naps. Both sets of our parents have sacrificed so much for us and we love them dearly for it. I know that not everyone has this kind of support, so I want to express my gratitude to them for being such amazing parents/grandparents and for giving up so much for us. They would both say it's not a hardship (that is because they rock). Our parents worry about us, our spouses, our children, their other children and how they are feeling about all of this and so much more. 

We met with members of our team on Thursday for a care conference. We went over the very best way to manage the funds from the fundraiser, and discussed another medication. And we talked about how things are looking from their stand point. It is somewhat depressing and we hope for a good long time with Gator. The reality is that his time without a healthy heart is looking rather short. We are trying to do what is very best for him. One thing that I did a happy dance for... Duh dun an naaaaaa!!! Alex's antibodies dropped a little!! He is now at 77%... I am a "glass half full" kind of gal. So even though it isn't that much on paper.... It is HUGE to me... Prayers are being answered. 

We are not stopping our lives at all. One of the things we all really look forward to is the MS ride. Daddy does the century and the rest of us who are old enough and capable, volunteer. This year we were lucky enough to have Grace with us.

 Some wonder if that is a good idea for Gator. The best way to forget yourself and to forget your trials is to do something for someone or something else. So this year in his oversized T-shirt, Gator volunteered along side Ryleigh, Gracie and myself. 




We unwrapped medals, hung them, passed them out, misted the riders at the finish line, cheered and worked the snack table. Preparations for this was a little crazy and I forgot the extra oxygen tank and bottle for May who was staying with Grandma and Papa Homer. But they are amazing and totally worked it out!
About two miles into the ride Jeff got a screw in his tire and I got to drive the course with my hazards on as "support".. He was amazing and it only took him 1/2 hour to make up the lost time. I am always blown away at how great of a rider he is. 

G&G brought up the little girls to cheer daddy at the finish line. 
I actually got a photo of his finish!! 
I am excited to start riding with him. I am going to do the SOJO ride with him in October.

Now that you are at the end of this novel...

my last thought is from Gordan B. Hinckley.... I have this taped to my calendar and it makes me happy and so I share...

Be Alive, Cheerful, Patient, and full of SUNLIGHT!
"Stop seeking out the storms and enjoy more fully the sunlight."




Friday, June 13, 2014

Cleaning out the medicine cabinet


September 9, 2002

DO MEDICATIONS REALLY EXPIRE?

Try An Experiment With Your Mother-In-Law

By Richard Altschuler

Does the expiration date on a bottle of a medication mean anything? If a bottle ofTylenol, for example, says something like "Do not use after June 1998," and it is August 2002, should you take the Tylenol? Should you discard it? Can you get hurt if you take it? Will it simply have lost its potency and do you no good?

In other words, are drug manufacturers being honest with us when they put an expiration date on their medications, or is the practice of dating just another drug industry scam, to get us to buy new medications when the old ones that purportedly have "expired" are still perfectly good?

These are the pressing questions I investigated after my mother-in-law recently said to me, "It doesn't mean anything," when I pointed out that the Tylenol she was about to take had "expired" 4 years and a few months ago. I was a bit mocking in my pronouncement -- feeling superior that I had noticed the chemical corpse in her cabinet -- but she was equally adamant in her reply, and is generally very sage about medical issues.

So I gave her a glass of water with the purportedly "dead" drug, of which she took 2 capsules for a pain in the upper back. About a half hour later she reported the pain seemed to have eased up a bit. I said "You could be having a placebo effect," not wanting to simply concede she was right about the drug, and also not actually knowing what I was talking about. I was just happy to hear that her pain had eased, even before we had our evening cocktails and hot tub dip (we were in "Leisure World," near Laguna Beach, California, where the hot tub is bigger than most Manhattan apartments, and "Heaven," as generally portrayed, would be raucous by comparison).

Upon my return to NYC and high-speed connection, I immediately scoured the medical databases and general literature for the answer to my question about drug expiration labeling. And voila, no sooner than I could say "Screwed again by the pharmaceutical industry," I had my answer. Here are the simple facts:

First, the expiration date, required by law in the United States, beginning in 1979, specifies only the date the manufacturer guarantees the full potency and safety of the drug -- it does not mean how long the drug is actually "good" or safe to use. Second, medical authorities uniformly say it is safe to take drugs past their expiration date -- no matter how "expired" the drugs purportedly are. Except for possibly the rarest of exceptions, you won't get hurt and you certainly won't get killed. A contested example of a rare exception is a case of renal tubular damage purportedly caused by expired tetracycline (reported by G. W. Frimpter and colleagues in JAMA, 1963;184:111). This outcome (disputed by other scientists) was supposedly caused by a chemical transformation of the active ingredient. Third, studies show that expired drugs may lose some of their potency over time, from as little as 5% or less to 50% or more (though usually much less than the latter). Even 10 years after the "expiration date," most drugs have a good deal of their original potency. So wisdom dictates that if your life does depend on an expired drug, and you must have 100% or so of its original strength, you should probably toss it and get a refill, in accordance with the cliché, "better safe than sorry." If your life does not depend on an expired drug -- such as that for headache, hay fever, or menstrual cramps -- take it and see what happens.

One of the largest studies ever conducted that supports the above points about "expired drug" labeling was done by the US military 15 years ago, according to a feature story in the Wall Street Journal (March 29, 2000), reported by Laurie P. Cohen. The military was sitting on a $1 billion stockpile of drugs and facing the daunting process of destroying and replacing its supply every 2 to 3 years, so it began a testing program to see if it could extend the life of its inventory. The testing, conducted by the US Food and Drug Administration (FDA), ultimately covered more than 100 drugs, prescription and over-the-counter. The results showed that about 90% of them were safe and effective as far as 15 years past their original expiration date.

In light of these results, a former director of the testing program, Francis Flaherty, said he concluded that expiration dates put on by manufacturers typically have no bearing on whether a drug is usable for longer. Mr. Flaherty noted that a drug maker is required to prove only that a drug is still good on whatever expiration date the company chooses to set. The expiration date doesn't mean, or even suggest, that the drug will stop being effective after that, nor that it will become harmful. "Manufacturers put expiration dates on for marketing, rather than scientific, reasons," said Mr. Flaherty, a pharmacist at the FDA until his retirement in 1999. "It's not profitable for them to have products on a shelf for 10 years. They want turnover."

The FDA cautioned there isn't enough evidence from the program, which is weighted toward drugs used during combat, to conclude most drugs in consumers' medicine cabinets are potent beyond the expiration date. Joel Davis, however, a former FDA expiration-date compliance chief, said that with a handful of exceptions -- notably nitroglycerin, insulin, and some liquid antibiotics -- most drugs are probably as durable as those the agency has tested for the military. "Most drugs degrade very slowly," he said. "In all likelihood, you can take a product you have at home and keep it for many years, especially if it's in the refrigerator." Consider aspirin. Bayer AG puts 2-year or 3-year dates on aspirin and says that it should be discarded after that. However, Chris Allen, a vice president at the Bayer unit that makes aspirin, said the dating is "pretty conservative"; when Bayer has tested 4-year-old aspirin, it remained 100% effective, he said. So why doesn't Bayer set a 4-year expiration date? Because the company often changes packaging, and it undertakes "continuous improvement programs," Mr. Allen said. Each change triggers a need for more expiration-date testing, and testing each time for a 4-year life would be impractical. Bayer has never tested aspirin beyond 4 years, Mr. Allen said. But Jens Carstensen has. Dr. Carstensen, professor emeritus at the University of Wisconsin's pharmacy school, who wrote what is considered the main text on drug stability, said, "I did a study of different aspirins, and after 5 years, Bayer was still excellent. Aspirin, if made correctly, is very stable.

Okay, I concede. My mother-in-law was right, once again. And I was wrong, once again, and with a wiseacre attitude to boot. Sorry mom. Now I think I'll take a swig of the 10-year dead package of Alka Seltzer in my medicine chest -- to ease the nausea I'm feeling from calculating how many billions of dollars the pharmaceutical industry bilks out of unknowing consumers every year who discard perfectly good drugs and buy new ones because they trust the industry's "expiration date labeling."

Reprinted with permission of Redflagsdaily

2003

I found this article very helpful today as I revamped our medicine cabinet.. Just the usual cough syrup, Tylenol, anti dia-rah-ha, and vitamins. But I was worried when I looked at our Tylenol and found them to be expired by two years. I have always been concerned disposing of things we no longer need. I very cautious because, I don't want to grab something for Alex and his special heart if it's not right. I firmly believe in not having prescriptions stay longer than the prescribed dosing and to take it as directed by the doctor, if done correctly will mean there isn't any left over, or very little. But I have wondered about these other over the counter things that seem to stay around much longer. It's nice to know that we have a little more time to use them up. 
Now we are organized and labeled so we can clearly see what we have. 

Tuesday, June 10, 2014

14%

Has it really been so many days since I have caught up on all the happenings??? The hard part is pulling away for just a few minutes in order to put my thoughts on paper. (Computer really)... 
Alex received his PICC line. It didn't bleed and it has been a good line except the very next day it clotted and we had to put in an IV in order to take care of the PICC and give his meds at the same time. In order to prevent clotting he has an extremely low dose of Heprin going at the same time as his milranone. That very same day after all the IV drama, I decided to give him a shower. Most boys his age avoid showers.. Not Gator man, I think it has to do with his temperature not regulating well. Showers warm him up just right. He was so happy to get soaped up and scrubbed down. Sponge baths just weren't cutting it. They actually give those in the hospital. We got him out early when I realized I had gotten the dressing around the PICC wet which is a huge No No!!! I frantically tried to dry it but there is such a huge risk of infection that it had to have a dressing change and he was not happy with me. I felt horrible and tried apologizing but it really burns. As brave as this little guy is, some things just stink!!! 
His school class sent him a video text and he sent them one back! 
We are so lucky to live near this incredible hospital, Alex has appreciated such wonderful and caring nurses, who end up thinking he is pretty great too. He especially loves Miss Jen from child life. She has been more then a specialist, she is his friend. He really looks forward to seeing her anytime she is available. 
This incredible nurse is Carolyn. She has taken care of Alex since he was just a teeny baby. She is another person we love and look forward to seeing. 
After getting his PICC line we were able to move to the 3rd floor... There Gator constructed this awesome car with boxes.. He and Teagan played in them as often as their nurses, meds, resting, and moms would allow.. Then they would take these "ramps" and race the cars down them. 


Keeping him down when he feels a little better is tough, planning discharge is our top priority.


We made it home....
Aaaaahhhhh.. *content sigh*
It was tons of education, organizing, planning, signing, and still Gator distracting and packing. 
It seemed a little crazy to have so much equipment in our home. Two pulse oximeter, two concentrator, tons of tanks, and oxygen supplies, new pumps and meds, and everything else we had before.... 
Together... 
I love that I never have to worrying about who is watching the girls, organizing everyone's schedules is the tricky part. I love our friends and family so much and appreciate them being so loving, helpful and brave.. Yes, brave. MayLee can be overwhelming with her oxygen, tubing, stickers, and regular baby needs. 
So being together means I can manage my little peeps.
Everyone loves helping me scrub the bathroom...


I have found there is so much to do at home. Which is great because we need to stay here away from germs. We do try and take walks. We decided to walk over to the school to pick up Gator's school medical kit. His class was so sweet and came out to see him. I could see relief in their little faces. I know some of his friends worry about him, or that being sick means he will change or forget them. But he knows them and is so thankful for their thoughtfulness. 

His wonderful teacher even came over to our home to visit Alex. It is such a blessing to us to have a wonderful supportive school and teachers. 
We still have a few moments of grief and frustration. We know that is normal. 
Today we headed back to the hospital for clinic. Everything is about the same as when we left last week so we plod on. 
One really neat thing. We met with Dan Rascon from channel 2 news. We shared parts of Alex's story in hopes of spreading CHD awereness and donate life. Mr. Rascon was so nice and very compassionate. We hope to also publicly share our gratitude to so many out there who we haven't even met. It is humbling to be the recipient of such generosity. 
In fact... There have been two groups of Alex's friends who have given to his heart fund. They have worked hard for this money and have handed it to us with smiles on their faces. I love you guys, thank you... One group also sent this sweet candy gram.. 
Why 14% because that is our miracle number.. It is so much better than 5 or 3 or none. So we are choosing hope and joy.