Hope for Max

Up and down, same old story

So the calvary arrived yesterday bringing a yummy breakfast. The down side of having supposed to be out of town is that our nurses were assigned at other houses for the weekend. Thankfully, Nurse Robin was able to come in on Friday and help us work Max over. My parents arrived Saturday morning and as thankful as Aaron and I were for the food and help, I think Max was happy to see some faces besides mommy and daddy. It was actually pretty evident given that he told Aaron to leave his room, but not the house :) and I don't even think he noticed me.

Max still sounds pretty rough, but he is definitely improving. His mood is much better. He even felt like playing today. Below is a picture of the fluffy friend zoo he opened with Nana this morning.

After Nana and Papa went home Max took a good nap and was ready to race cars and cheat at Candy Land. This evening has been a bit more challenging. After his last treatment we did get quite a lot out via the deep nasal suctioning. Incidentally, this morning he made my mom stay in the room for the deep suctioning. This is usually the part of the treatment where unecessary personnel make themselves scarce...apparently it's not pretty to watch. I'm usually helping in some way and frankly, I like seeing what comes out. There is nothing better then conquering a mucus plug and pulling it out of the lungs...I will take mucus over blood any day. The change in Max is instant. Aaron has seriously rocked the deep suctioning too. It's something that we both get out of practice doing, so it always takes a bit of getting use to. Anyway, late this afternoon his numbers were just hanging out in the upper 80s again and you could tell he wasn't comfortable. Even the mention of taking his mask off, even for a moment was/is causing him to break out in hives. Well, being the well trained respiratory therapists that we are we took a listen to his "lungers" as we call them. Well, he was hardly moving any air at all in his left lung. I have to say we were less than thrilled. Now he was favoring his left side, so I guess we should have known. We proceeded to do a pretty aggressive series of coughs with the cough assist machine and after about 20 minutes we heard some air moving. You can tell Max is much more comfortable. As I am typing, Aaron is going old school with some manual CPTs to keep his left side open while we get a little food in him and get ready for a very aggressive treatment. Between trying to keep his treatments on schedule, giving 2 antibiotics, acid reflux meds, probiotics, and oh did I mention he needs to stay fed and hydrated...I feel like our heads are swimming with details, but have I mentioned that this is WAY BETTER than being in the hospital, the beauty of being able to crawl into our own bed for a few minutes is priceless.  We are praying that we can literally knock this crap out of him over the course of the next hour or so. We are using every trick in our respiratory book. It makes me so grateful for the aggressive RTs at MUSC who taught us so much. There is no way we would be prepared to deal with this at home if not for their teaching.

Here is the difference a week can make...

Still got a sense of humor...

If there is one thing that is constant in our house it is an inappropriate use of laughter (for Modern Family fans, think Clare when the next door neighbor died) and Max's ability to keep us smiling.

So Max's numbers, for the most part have been much better. He has been moving air, but his chest still sounded tight. Well, now his numbers are a bit lower and his lungs sound much more fluidy and there is quite a bit of rattles. This is a good thing, because we are knocking the stuff loose. He is still feeling pretty crummy. He just wants to watch tv and "rest his eyes." He refuses to let us take his bi-pap mask off and just wants to be left alone.

We are in the midst of what we hope will be a productive treatment. Aaron has gotten quite a bit out with some deep nasal suctioning. Max hates that. Always the trooper, after the suctioning Aaron was getting his CPT vest started back up and with all the machines it is a bit loud. This is how the conversation went down:

Max: Daddy, what lies on the bottom of the ocean and shakes?

Aaron: What??? (not understanding where this is going)

Max: WHAT LIES ON THE BOTTOM OF THE OCEAN AND SHAKES!?!

Me and Nurse Robin: Aaron, it's a joke...

Aaron: Oh, what?

Max: A nervous wreck!

Seriously, the kid had just been coughed and deep suctioned twice with numbers plummeting and upon recovery our kid pulls out a joke. Let's just say this was not what we expected.

Given what is looking like a rough evening, gives us hope for a much better tomorrow. Here's to hoping that all these yuckies get out. I'm actually excited to listen to his lungs after this go round.

Peace

 

 

Reality Check

Living with the reality of SMA, for us it means all plans are set in Jello. I should be posting pictures of our week with my parents at the beach and telling you about the beginning of our vacation in Charleston, heading to Disney World in a few days. Boy, that would be nice if reality didn’t have to check in now and again.

You may have recently read about a little girl named Avery with SMA. She was diagnosed April 6^th…she became an SMA angel April 30^th. In her brief time she seems to have caught the world by storm, I guess timing is everything. It has called attention to SMA, which is always good. The reality of SMA comes in all different forms. I was struck by the description of the day she died. Declared healthy, all things considered a mere 3 days before a lung collapse and cardiac arrest. She was smiling the morning of her death.  Your average parent may wonder how that could happen so quickly, your SMA parent just nods in understanding.

This is how our day went down…Max woke up with excellent numbers ecstatic about his trip to Charleston. We did a routine treatment and loaded the van. Okay, Aaron loaded the van. We hit the road about quarter to 10. Max was a happy camper watching DVDs. About two hours in to our trip, we stopped for a bathroom break, Aaron got Max out of his chair and they were watching Scooby Doo on the TV while I took the wheel. We were about 10 miles from stopping for lunch when Max asked to get back in his chair. We told him that we would be stopping soon. Within a matter of minutes Max started saying his chest hurt. We pulled over and got him in his chair. We continued to get lunch, but he was still saying he hurt and you could tell he was uncomfortable. By the time we got to our stop Max was asking to be coughed with his cough assist machine. Thank God for the generator. So here we are in the parking lot of Chipotle coughing Max. We made two big decisions, one to forgo Chipotle and two to head back home. We were only on the interstate for a few minutes when Max started asking for his Bi-pap. By this time Aaron had broken a full sweat no less than four times. We unpacked the Bi-Pap and Aaron ran the generator the whole way home. Max slept, all be it, uncomfortably. Needless, to say the ride home felt pretty long.

They say that ignorance is bliss and sometimes I am inclined to agree. The one thing we didn’t do was pull out the pulse/ox to check oxygen saturation. Looking back this was probably for the best. When we got home it was the first thing we set up and Max’s numbers were in the low 70s. I have to say Aaron and I were a bit shocked. We had been listening to his lungs consistently and he was moving air. Needless to say we called the pediatric pulmonary on call immediately. Thank goodness it was our favorite, Dr. Stewart. We know as sure as we are sitting here that anyone else just would have told us to bring him to the ER. Not that this would have been bad advice, just not necessary given our equipment and assistance at home, unless he needed intubation. Dr. Stewart wanted continuous, very high power treatments until we got his O2 into the 80s. If we couldn’t get it within a few treatments and/or got to the point we were uncomfortable we needed to call EMS to bring us in. She already called PICU to let them know that Max may be heading in. Per her instructions we started a very powerful treatment, probably the toughest we have ever done and when it was over his numbers (still with O2 bled into his Bi-Pap were in the mid-80s. We talked to the doctor again and she was pleased with the progress. She feels he has a pretty big plug that we need to move around and told us to expect numbers to get worse before they got better. Aaron and I took turns with the nurse all night doing treatments every 2 hours. By early morning his O2 was in the 90s with only 1 liter of oxygen bled in, his respirations had gone from the 70s to the 30s, and his heart rate was down in the low 100s (vs. high 100s to low 200s…which was more disturbing to us then the oxygen levels).  Our biggest fears were respiratory failure/collapsed lung. This morning has been a bit rough, as Aaron and I are both pretty tired and holding vigil in Max’s room. Max is saying his chest hurts which is consistent with pneumonia. We have started him on all his antibiotics, both oral and inhaled, so we are now on our 30 day regiment.

That, my friends, is how a day can go to hell in a hand basket. Aaron and I can sit back and play coulda, woulda, shoulda, all day long. The fact of the matter is that we know at the end of the day we provide the best care we possibly can and make the best decisions we can. All the while we live with the reality that despite our very best efforts SMA may win. The difference between us and the average kiddos parent is that every time Max gets sick we have the interior knowledge that this could be the time he doesn’t recover. It is not fun, it is not pretty, and it is definitely no day at the beach. I pray all the time that the day Max’s suffering outweighs his joy, that he goes quickly, because at the end of the day there is absolutely nothing worse than watching your child suffer and I would gladly live my life suffering his loss than watching him struggle to breathe. I for one am glad that little Avery’s journey wasn’t filled with suffering.

So with all that being said Max is doing much better and Aaron and I clearly made the right decision to return home, as much as we wanted a replay of last year’s Charleston trip and subsequent hospital stay at MUSC…we are very happy to be with all our stuff and not on the road. As Aaron often says, a bad night at home is better than a good night at the hospital.

The poop has hit the fan...

So just when you thought, or at least we did, that the High family had this whole SMA thing nailed we get thrown yet another curve ball. Many kiddos with SMA have trouble with constipation and slow gastric motility. Max did have some problems, but with all the work on his diet in the last two years things in the belly/bowel area have been working really well. Now go back to our hospitalization and major antibiotic use…looking back that is probably where it all started. My kid, like many with SMA, are quite sensitive to any changes in food and /or medications. Well, when he first went on the antibiotics it was as expected, totally explosive BMs, which we got under control quickly with the use of probiotics. However, ever since he discontinued the medications his typical normal schedule just hasn’t quite returned , if you get my drift. Lots of smaller poops which basically have been wreaking havoc on his bottom. I think this all came to a culmination last week. He became severely constipated and all of our past remedies for constipation weren’t working. Typically ½ a cap of Mirilax mixed with food will do the trick, then we had to move to a cap and still nothing, Nathan, nada. Last Thursday I called his gastro doc and spoke with the nurse. Now I really respect the profession of nursing, believe me - we love ours, but trying to impress upon her that Max is not like 95% of kids was a bit difficult. We needed action. I know she wasn’ t even looking at his chart, because she didn’t know he was g-tube fed or in a wheelchair. We kept Max home from school on Thursday in case we got in for an appt. or he had a major blowout. No such luck on either account. By this time, Max was not processing his foods super well, so nutrition was becoming a concern.  Friday, still nothing. Luckily Max wasn’t in any pain or feeling bad, so I just kind of continued the day normal, while continuing the discussion with the gastro nurse. By Friday afternoon she recommended a Mirilax cleanout, which is basically like prep for a colonoscopy. It is at this point that we had a serious communication meltdown. She couldn’t understand that I literally couldn’t force his belly to process food or liquid and that now we were concerned about aspiration and his respiratory health. Her instructions were not super thorough and actually left out some important information. Needless to say we ran him on Mirilax all night during his feeds with absolutely no results. So here we are on Saturday of Easter weekend and things are not going well. Aaron and I are really frustrated and this was our first major gastro issue in years. We saw the writing on the wall and it all said hospitalization. For the poop counters we were at 6 days with anything. Max’s bowel sounds were getting slower and his belly wasn’t doing super hot either. So I called the pediatric gastro doc on call, I figured if my holiday weekend was getting ruined then so was everyone else’s. I know it wasn’t the nicest sentiment, but I had also been working on this all week and trying to convey to his nurse the urgency of our situation to no avail. He was very nice and proceeded to give me a thorough understanding o of how Mirilax actually worked and what were doing wrong. I expressed all of my concerns and he agreed that if by Monday there was no change then Max would be a direct admit to the hospital. I followed his advice to the tee giving Max 8 oz of Gatorade with one capful of Mirilax in under an hour, then waiting 30 minutes and going again until Max couldn’t tolerate it anymore. Apparently that was the valuable information the nurse left out was exactly how quickly the Mirilax needed to be ingested. After 32 oz. Max was done. His belly was so distended and he couldn’t process any more food. We knew we had done it correctly because he wasn’t urinating at all and his belly was empty. It was all in his bowels. The poor kid was miserable and in turn so was everyone else in our house. I called the doc back, because I figured bothering him all weekend was better than being at his mercy in the hospital where we had absolutely no control over nutrition at all. Most physicians have a poor understanding of the SMA kid’s dietary needs and tend to try to treat them like all other kiddos.  Not realizing that even brief periods of fasting can have irreversible effects.  The doc suggested going to get a glycerin suppository to try and help speed things up. I have to say I’m pretty sure that was a complete waste of time and slightly traumatic for all of us. Max was up most of the night and so were we. He was so uncomfortable and we were all on edge.  He was awake and wanted to be turned every 20 to 30 minutes until around 3:30 am – when he finally fell asleep. When I woke up the next morning, I found that Max was finally able to get some much needed sleep. He slept until 8:30 and when he woke up Aaron and I were never so happy to see literally mountains of poop!  Traci almost painted “hurray” in the driveway with his brown aftermath for all of our neighbors to relish, but alas I was able to talk him out of it. Needless to say it was a busy morning, but filled with relief…for all of us. Unfortunately, we were unable to make mass on Easter, but we were able to have some friends over for a wonderful meal that evening.

So Monday we actually got to roll with our normal day! Which was made even better when Max got to school. A few weeks ago the school had a ramp put in so that Max could have access to the recess area. Previously, given the way it was set up he would have had to take his chair through a lot of sand and end up getting stuck  - sorry Robin! I have to give the physical therapist in the school a lot of credit, because she pushed really hard to make this happen so Max could enjoy recess with his classmates. He has since been having a blast racing tricycles and playing games. Well, the maintenance guys who installed the ramp pathway really took a liking to Max and had some special signs made in his honor.

We feel so fortunate that Max has found such a loving environment in this school district. We have continually seen people go out of their way to make Max’s school experience successful and as normal as possible. We hope the trend continues when we go to Max’s IEP meeting at the end of the month to plan for kindergarten at Helen Caro Elementary.

A brief update

So it's hard to believe that it has been almost a month since the MDA walk in Panama City. Time seems to be flying by faster and faster...case in point, Alex will be here in 3 MONTHS PEOPLE and we haven't done a thing for the little guy, seriously, not even a car seat.

Aaron and I want to thank everyone who donated and came out to walk with us. We set a really high goal this year and were overwhelmed when we not only reached the $4,500 mark, but surpassed it by almost $200. In addition, we almost reached our goal of 50 walkers this year. We say it often, but we have the best friends and family around, for sure.

We managed to survive March, even our "bad weekend," the title given to the last weekend in March where something with Max's health always seems to happen. Boy, did we go out with a bang, let's just say the High family fun meter was pegged with an Easter Egg Hunt and Potluck at the church on Saturday, birthday dinner for Uncle Travis Saturday night, a great Palm Sunday mass at church on Sunday and some dear friends little girl, Sophie's first birthday party Sunday afternoon.  All three of us were exhausted. On the up side, I was given a reprieve from kitchen duties this weekend.

April is already shaping up to be a busy month. Max has a sleep study tomorrow night, which Aaron is going with him...these are not fun. The pulmonologist wants to make sure that Max's Bi-Pap settings are still at the appropriate levels. In addition, Sacred Heart in Pensacola is now contemplating providing Max with his bone density infusions, which means no more trips to Mobile (fingers crossed). We meet with the doctor about it next week. My parents will be getting a condo on the beach over here towards the end of the month. so we are looking forward to some solid beach time too!

Now on to fun equipment news...we have been trialing an eye gaze system for Max with the school and it worked wonderfully. Not only that, but the school has already ordered Max one to complete school work at the school and our paperwork should be submitted this week for Max to get a system for the house through insurance. Max has a little trepidation, given that there is a lot to learn, but the benefits are immeasurable. For one thing Max would be able to communicate with us, even when he is sick. Max and I had a long discussion about how we all have to learn things and he seems to be warming to the idea. After all driving his chair seemed hard at first and now he is a pro.

I have to admit, it's kind of nice not having something more exciting to report. We have just been enjoying some wonderful weather and a brief respite of normalcy. And since I know everyone loves a picture...here is one of Max sporting his new shades with Daddy.

Peace and have a blessed Holy Week!

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!