Hope for Max

Just for fun

I know my last two posts have been kind of heavy, so I decided you could all use a reminder that life is fun too.

Max happened to notice on the forms that the nurses have to fill out for each shift that there is a diagram of a human body. Max decided that he wanted to play veterinarian and we needed to print out diagrams for all of his fluffy friends.

 Needless to say I could see lots of internet research in my future, as this kid isn't one to forget. Then I remembered that one of his nurses found a site called Enchantedlearning.com and I actually paid for the subscription. I love this site. First of all as for learning sites it has been the best we've found for science and history stuff. We have done everything from printing little books on the history of the American flag, to making that Thankful Wreath, to printing life cycles of animals. I was able to find all the outlines for all his fluffy animal friends along with diet, habitat, and important facts about each animal. The site only costs about $20 a year and you can have up to 5 computers assigned. It is a great tool for rainy days!

After we printed all the diagrams we set up our clinic at the kitchen table. Incidentally, this table was the Island of Sodor last week. Now most of you probably don't have a stethoscope and otoscope lying around your house, but such is life with the High's. We also had thermometers, syringes, medicine cups. We then lined all his fluffy friends up in the waiting room and called them one-by-one. Here are some pictures of Max examining his fluffy friends.

 

 

Now, we don't just have boo-boos in this clinic. We had an ear perforation (from a q-tip), ear infections, broken feet complete with x-rays and tummy aches. We had to read about each animal while we examined them and he made me document our findings. This kid was cracking me up. So far only one fluffy friend has completely recovered and was sent home. The rest remain in cages at the "clinic."

DON'T FORGET IF YOU HAVEN'T MADE YOUR MDA DONATION FOR THE WALK THIS WEEKEND,THERE IS STILL TIME.

Just click on the link to make your secure donation. So far we have raised enough fund to send ONE kid to camp and TWO clinic visits.

http://www2.mda.org/site/TR?fr_id=1446&pg=personal&px=1053284

ALSO, IF YOU PLAN ON WALKING AND NEED A REGISTRATION FORM PLEASE CLICK ON THE FOLLOWING FILE.

Download MDA Muscle Walk 2012

 

   Thank you so much for your continued support of Max and the Muscular Dystrophy Association!

Happy St. Valentine's Day! A day early...

Finally done with the antibiotics! Let me tell you every treatment has been a real challenge and carefully orchestrated plan. We even had to divvy up the work with the nurses. I’m sure it didn’t help that Aaron and I were so exhausted when we brought him home from the hospital we could hardly get a coherent thought out of our mouths. It would have been comical, had it not been so critical to get it right. The poor nurse was so confused that night.  Max isn’t supposed to go without food for more than 3 hours. Well, he had to be without food for 1 hour prior to taking the antibiotic. Then that antibiotic had to be flushed in with 30ml of Sprite to get it to make it through his g-tube. Two nebulizer treatments of Xopenex and Pulmozyme allowed time for the antibiotic/Sprite to digest. Then we had to start his 30 minute CPT vest treatment and his four sets of coughs with the cough machine. Then he needed all his other medications and a probiotic (which had to follow by one hour to keep his belly from messing up with the antibiotic, parents take note…it worked awesome). Then we had to get him on his last nebulizer treatment of Tobrimiacin (which is an inhaled antibiotic that lasts for 28 days, so we still have a while to go on that). After that we can feed him again. All this takes about 2 and a half hours when it is said and done and that is when we are totally on our A game.  Needless to say it is very nice to be done with the antibiotic and the probiotic boluses (now those go back to his normal probiotic doses with his food).  I know the kid is excited for more condensed treatments and so are Aaron and I. But enough about that.

Last week I met/conversed with two separate families dealing with brand new diagnoses. One is a form of Muscular Dystrophy and the other is SMA. Wow, what to say. The MD must be a situation of Divine Intervention. There is a little boy in Max’s class that is his very best friend. They just love each other. It is that little boy’s younger brother. The mother was expressing to me how happy she is that our boys have had the chance to interact with each other and how good her son is with Max, because it gives her hope for the relationship with her own sons. The whole time we were talking the boys were wandering the school grounds holding hands and talking about complete nonsense.

What do you tell a family with a new diagnosis? Their hearts are breaking. Their minds are reeling. They have both been dealing with tests and genetics for months just trying to find an answer. Then this…in the days of such medical strides there is no cure for their child. As a parent, especially of a young child…you expect doctors to have all the answers. Then you learn the harsh reality…it’s called “practicing medicine.” The answers not only don’t exist, but you face challenges from the very people who should be helping you. Like what, you may ask…how about the number of families that are turned over to child services, because instead of entertaining the possibility of genetic issues the pediatrician assumes the family is abusing the child. I am so grateful that we never experienced that, but the stories I have heard are horrifying. Heaven forbid if you don’t live in a large medical community where every test is a road trip for days, more time off work (for many who can’t afford it), more doctors, more bloodwork, more watching your little one suffer. All for an answer you never want to hear.

What am I thinking in these moments, with these families? Get ready to fight. While the vast majority of people are loving and value all kinds of people, our system does not. You will spend most of your time trying to provide a reasonable quality of life for your child in a system that is always trying to save a dime. You will, in anger, cry, write letters, complete appeals, and sometimes even yell to get your child the things most families get to take for granted. You are the mama bear in its most vicious form. Max's PT told me that he told the director of outpatient rehab (refering to me), "you can give her what she wants now, or try to fight her and give her what she wants later...the end result will be the same." This was regarding problems with scheduling Max's most critical therapy, aqua. To give up would be to allow your child to give up and that is not even an option.

What do I actually tell the family? Be ready. Be ready for the most beautiful, amazing kid ever. Be ready to see an outpouring of love like you never imagined. Be ready to see the best in human nature when dealing with people in public (and for some embarrassing emotional social moments, I try to avoid those). Be ready for a kid with the biggest heart ever. Now I know you’re thinking, how can I possibly know that, well, I have proof. Below is Max’s Valentine project at school. Guess which one is his…

I have a kid that lives out loud. You will never find DJ Max E Max hiding in the shadows. A little guy that while purchasing new sunglasses on Saturday informed me he was stylish, cool, and looked like a rockstar!

Yes, there are many days that your heartbreaking moments will outweigh your good ones, but that makes the good ones so much sweeter.

Happy St. Valentine's Day from our heart to yours!

How can you help? Join us in the fight!

http://www2.mda.org/site/TR?fr_id=1446&pg=personal&px=1053284

In case you haven't figured it out yet...I'm a Catholic

I truly never try to be political. My only goal in writing this blog is to keep you updated on our lives, be a voice for families with special needs children (even though the drastic budget cuts are making this a political issue I would tackle), and remind everyone that all life truly has dignity. I just feel like I need to speak up on this issue.

These are my beliefs:

 I am Pro-Life and not the pro-life that many ascribe to regarding abortions....I mean REALLY PRO-LIFE, as the Catholic Church teaches. I DO NOT believe in the use of contraceptives...other than natural family planning, I DO NOT believe in abortions, and I DO NOT believe in the death penalty. I believe in protecting life at all stages. Whether that life is young, old, disabled, "bad" or has breast cancer (BTW - apparently the Susan G.  Komen organization doesn't even agree with that). I believe in the dignity of all life (that would be my tie in to an ongoing theme in this blog).  I am sick of the supposed "majority" of Catholics speaking for me and being in favor of the current HHS mandate.  Please people, do me a favor and call a spade a spade...you aren't Catholic. Faith is not a salad bar, truth is not a menu. You don't get to choose what is most in line with your personal beliefs and call is truth, the subjectivity of truth is a lie. God is not a democracy, you either believe or you don't. Sure, if you don't agree you can turn your back on him, but He is still God. He doesn't get voted out of office at the next election.

You may not agree with me regarding the use of contraception and that is okay, you are entitled to your opinion. I have no problem with that. If that is the case, do what I do...I don't support Planned Parenthood or the Susan G. Komen Foundation (yes, I truly appreciate the work this foundation does, but because they financially support Planned Parenthood I refuse to support them), so don't support, work for, or utilize Catholic hospitals, universities, adoption agencies, or charities. That is your right. What I do have a problem with is forcing my or any faith organization to violate its moral conscience. This is a clear violation of religious liberty and YOU should be worried about that. I often think about the quote at the end of the Holocaust museum and I think it is incredibly appropriate for the current situation...

" First they came for the socialists, and I did not speak out -- because I was not a socialist. Then they came for the trade unionists, and I did not speak out -- because I was not a trade unionist. Then they came for the Jews, and I did not speak out -- because I was not a Jew. Then they came for me -- and there was no one left to speak for me." Pastor Martin Niemoller

I really don't want to offend anyone, but I feel like we see a lot of bishops, priests and religious standing their ground on this issue and appearing on television or speaking out. Please know that many Catholics (and shocker...non-Catholics) are also in union with the Catholic Church on this issue. I am not trying to convince you to quit using contraception or even attempting to change your beliefs on the death penalty. I just am so disgusted with the "polls" that seem to mean so much. Here's an idea, if polls are how we make decisions I think we should take a poll of active duty service members currently serving in the Middle East and if more than 50% want to come home, then we bring them all home. If over 50% of the people polled think that a president isn't doing a good job, at any time...then, well, step aside for the next person. At the very least our government is what faith is not, a democracy. Seriously, does this sound like a good idea? See what I mean, this "logic" just doesn't work.

In the end, this is not really a pro-life or pro-choice argument. This is not even an argument of contraception. It is the question of freedom. The first amendment protects you from having to believe what I believe, but it also means that my faith based organization can freely practice their beliefs. I challenge you to think deeply about this issue and not just dismiss those "crazy" Catholics.

MDA MUSCLE WALK SATURDAY, MARCH 3RD!!!

Okay, Max is feeling much better, he even went back to school yesterday. He was so happy to see his friends. We have finally gotten a few full nights of sleep in a row. Aaron is back to work and I am catching up on my to-do list. It's hard to believe that the MDA Muscle Walk is less than a month away. Aaron, Max and I are making plans to head to PC to join everyone this year (and hopefully no pesky viruses will keep us away).

The Muscular Dystrophy Association was started by a group of parents who simply wanted a better life for their children suffering from neuromuscular diseases.
Sixty years later the lives of those living with these diseases may be improving, but we want more...we want CURES!

Team Hope for Max is once again participating in the MDA Muscle Walk at the Panama City Mall in Panama City, FL on Saturday, March 3, 2012 (registrations starts at 7:30am) and we want YOU to join us!

Whether you are in PC and want to FLEX YOUR MUSCLES or are supporting us from afar with a financial contribution. We need your help. We had a GREAT turn out last year. Our goal for this year is 50 walkers (We count all those on wheels too ) and $4,500.

PERSPECTIVE WALKERS: Send me an e-mail letting me know that you plan to walk with us. T-Shirts are available (the gray with green lettering, sorry no kids sizes this year) for $15 a shirt. Our team colors are kelly green, gray and white. Feel free to copy and paste to forward out to potential walkers/donors. Just make sure the link is still active. It will direct them to our team page.

If you can, just click here to make a secure, online donation before 3/3/2012.


Thanks so much for helping me Make a Muscle and Make a Difference.

Aaron, Traci, and Max High (Team Hope for Max)

Finally Home!

Well, you know what they say about the best laid plans...we were hoping to be released from the hospital on Monday. We spoke at length with the doctors on Sunday afternoon. The scales had been tipped. There comes a point in time during Max's extended hospital stays when the risk of being there outweighs the benefit. The benefits we were receiving with IV antibiotics and treatments every two hours were going to be overshadowed by the other germs he was being exposed to in the hospital. By Sunday we could see that point coming. We basically run our own hospital at home and with all our nursing care it was time to head home for the real healing to begin. He was started on oral antibiotics on Sunday and as long as his fever didn't return on Monday we were good to go. Really, our only benefit of staying in the hospital was that Aaron and I didn't have to do the "deep suctioning." We could leave that to the pros. Let me tell you it is not fun sticking a suction catheter down into your child's lungs. I'm pretty sure it is miserable for all of us who have done it and even though we know the benefit of doing it...it just feels so darn cruel.

Monday started out pretty well. Aaron had been at the hospital with Max all night running his treatments, but there is no rest for the weary. He had to head home and get to work on figuring out how to get us back home. Max was still dependent on his Bi-Pap and we haven't gotten the power inverter installed on the new van yet, so we had no way to power the Bi-Pap en route from the hospital. Aaron had to go get a receiver hitch cargo carrier for the van (yes, dad, I know, you have wanted us to get one for months now) and then he had to strap down the generator on it, so that we could have mobile power. Aaron headed to Harbor Freight with tools in hand to purchase and install it (thank goodness it wasn't the middle of summer). Well, it's not the easiest thing to assemble, especially on only a couple hours of sleep. Thankfully, a gentleman from Iowa (I point this out, because we have seriously only met the nicest people from Iowa) stopped and helped him take care of the whole thing, spending about an hour out of his day to help Aaron.

By the time Aaron made it back to the hospital Max's oxygen was hanging out in the 80s and his respirations were really high again. Clearly, we weren't going to be able to take him home like that. Now I know this sounds rough, but in reality it was great. Apparently, we had really knocked some stuff loose on the last treatment, now we needed to get it out. As I explained to the respiratory therapists, I think of the mucus in the lungs like those Mucinex commercials. I consider them the enemy. He ended up getting deep suctioned four times and then we rolled with another treatment less than two hours later. After the next treatment we were able to get his lungs sounding so much better. It was awesome. He went to sleep with the best numbers in over a week.

Tuesday, we were really ready to go. Max was his spunky self and we were prepared for transport. We were also able to get home much earlier in the day which is better for everyone. Max still didn't want off his mask at all and the doctors told us to prepare for a slow wean back to baseline. Nurse Robin met us at the house to help us get settled and paperwork in order and Nurse Nancy worked last night. Poor Nurse Nancy, by the time she got here at 6pm Aaron and I were so exhausted we could hardly keep the treatment structure straight. Max is on four different nebulizers and his antibiotic has to be given VERY specifically with his g-tube feeds, combine that with some changes in medications and our usual game was off. We have run with treatments every four hours and Aaron and I were able to get some sleep by rotating working the treatments with the nurse.

As always we have learned a lot from the hospitalization and really accomplished quite a bit with fine tuning some of his care and treatments. As luck would have it one of the respiratory therapists is also the rep for Max's CPT vest. He taught us how to reprogram the machine to customize the CPT therapy  for when Max is sick and needs more support. We were also able to get lots of face time with the pulmonary doctor who wants Max in for a sleep study to make sure his Bi-Pap pressures are at the best for him. The PICU attending physician was also great at going over Max's medications in detail and reevaluating and changing some things up based on the latest research. This was one of the first major illnesses with Max's Amino Acid diet and also the first that Max didn't have any digestion issues, coincidence? We think that helped the healing process immensely. There was a lot of talk about Max's Amino Acid diet in the PICU. The biggest thing I think we took from this stay was confidence. Not just because mass is held daily at the hospital and a priest stops by daily and there are morning and evening devotions over the loud speaker (although that didn't hurt), but we really liked all the doctors and the nursing staff. I think respiratory will experience some growing pains in the near future with the new pulmonary doctor and her "new" ways, but it will only benefit us and other families. I guess change isn't so bad after all. Aaron and I would like to see some more equipment for respiratory on the pediatric side, but now we know that when we make donations to Sacred Heart Hospital we can request that they be specifically for respiratory equipment for the children's hospital.

Today was pretty hectic and tiring. Max is definitely feeling better, but we are still doing treatments every 5 hours. He actually spent more time off his Bi-Pap than we expected, but we are working hard to make sure he isn't overdoing it. As always, he sets the timeline regardless of what any doctor says. Aaron and I are trying to not only catch up on sleep, but on all the things that slip to the wayside when living at the hospital (paying bills, doing laundry, cleaning). Thankfully, food has not been one of them. Our AF family has stepped up again to keep us fed for a few days and we are so grateful. Thanks for all the prayers and well wishes, continue to pray for a speedy recovery for all of us.

Here is a picture of Mr. Max "taking a nap." He has that grin on his face that says, sure I'll nap for you, NOT!