Blown Away

Today has been a good day. Max seems to be feeling much better, and the nurses and docs seem to have found his happy place from a pain control perspective. Kate said he was awake for a couple of hours, just calm and looking around. He was even trying to play with his toys with his arm that is taped to a foam board because of his IV...it kind of looked like he was flapping his wings instead though. But, with the amount of pain meds and other sedation drugs he has had in the last 36-hours, it is very impressive that he can focus on anything!! From a medical perspective, his incisions and new man-made orifices seem to be healing well. His blood gases have looked pretty good as well, his CO2 has been running in the mid 50s. His oxygen needs have been right at 40%, so the INO has certainly helped with that. The docs have decided to start weaning down the INO already. The dosage is measured in parts per million (ppm), and Max started out yesterday at 20 ppm. The plan is to turn the dose down by 5 ppm every 8-hours assuming he tolerates the changes well. They made the first move from 20 ppm to 15 ppm at 3:00 this afternoon and the change did not even register as a blip on the screen!! We are praying for continued changes in the right direction over the next 24-hours. Max also started to get fed through his new G-tube this afternoon and seems to be doing well. They started him at half of his normal feed and they will slowly increase his feedings and decrease the IV fluids until he gets back to full feeds and then the IV can come out...Max would REALLY appreciate that!!

Kate and I had our first of many meetings and training sessions before Wes comes home, hopefully next week Monday or Tuesday. Tonight was learning Wes' home monitor. Since he is coming home on oxygen, his O2 saturation needs to be monitored 24-hours a day. This is done by a little apparatus called a pulse sock that is worn on the foot. As long as Wes' saturation is higher than 85%, Kate and I sleep well. If it drops lower than that...the alarm goes off. I can only describe the alarm as a mean alarm. It is meant to do just one thing...alarm you. Wes' has been very stable over the last number of weeks, so we are hoping for a few alarm free days here and there. We also had to learn about the oxygen tanks and regulators, as well as the nebulizer machine for his breathing treatments that he gets 4 times a day. Wes is not going to be getting out of the house much for a while, but we do have a number of doctors appointments and therapy sessions in the near future. So Wes will come with a car seat, all of the diaper changing stuff, a spare feeding tube in case he pulls his out, his O2 monitor, an O2 tank, and the nebulizer machine depending on when the appointment is. And that does not hold a candle to the hardware Max will be toting. In fact, most kids with trachs get custom built strollers called "kid carts" that is specifically designed and built for Max and includes a spot for everything necessary to get him from one place to the next.

I titled this post "Blown Away" because that has been my overwhelming feeling today. Yesterday was one of the longest days I have had in a while, maybe since Kate was in labor more than 5-months ago. Today was a lot different than that. I was hoping to get into work early this morning so I could catch up on some things. The storm last night knocked out our power for a few hours, so instead of the alarm going off at 6:00, I woke up at 7:48. Whoops!! But the extra sleep was nice. I was talking to one of my buddies this morning on the phone about Max's surgery and Wes coming home. He mentioned that it would be a good idea for Kate and I to get a date night in before that happens. I told him that it is Kate's birthday tomorrow (Thursday) and we had plans to go to San Chez in Grand Rapids after we spend some time with the boys. About 2-hours later a co-worker of mine drops off an envelope on my desk containing a gift card to San Chez. A few minutes later I got an email from a high-school classmate saying that we should expect to see a check in the mail. We recently had out 10-year high school reunion (man...we are getting old!!), and Kate and I could not attend given the situation with Max and Wes. Apparently, a number that did attend made donations for Kate and I. Later in the afternoon, another one of my friends called and said he made a few phone calls and we should expect to see a handful of gas cards show up in the mail some time soon. Kate and I do not know how to react to all of this. To say thank-you is just not enough. God has asked a lot of us, but He has provided much in return. We have learned so much about what it means to be a Christian and what is means to empathize with others. Kate and I have commented to each other on a number of occasions that we cannot wait until we have the opportunity to pay some of this "forward."

Along those same lines, I need to mention a few other things. I struggle with how best to present this information, because Kate and I truly believe that God has and will provide for our needs. Some dear friends of ours have organized a 5K race/fundraiser for Max and Wes. They asked me to mention it on the blog because they felt like a lot of people want to know how they can help. I struggled with how to bring it up and how to make mention of it, and then a lot of stuff was happening with the boys and I was not able to get the info on here sooner. At any rate, they have a website where you can find all the details, and the link is below:

http://www.quest4cure.org

They organized a race for a gentlemen last year who had essentially an unknown ailment in which he incurred significant medical expenses. Please know that we have very good health insurance through my employer and that medical expenses have not been a hardship for us. Our friends Rob and Tiece Dykema, (you will see their names on the website), said they wanted to do the race again and have if be for the benefit of Max and Wes. This led to a lot of contemplation on my part. I never in a million years thought I would be in a place where I had to be a steward of not only my own money, but also of gifts given to us because of a difficult situation we are going through. Sounds like a good problem, but it is one that has weighed heavily on my heart. I looked into setting up an organization where donations could be tax deductible, but it turns out that the federal government doesn't hand those out very easily. So this is what we did (I say "we" because I had a lot of help and a lot of advice): We have set up an account at a bank (not Macatawa Bank, because I work there) called the Wiersma Family Fund. Neither Kate nor myself has access to this account. The fund is managed by three people of our choosing that all had to meet one criteria: they have to have the best interest of Max and Wes at the forefront of any and all decisions. I will keep two of their names confidential, but I will say that one of them is my Dad. My Dad has been in the "fund management" field (to put it very simply) for longer than I have been alive. I mention his name because his office address is where we would request any financial help be sent. That address is:

Wiersma Family Fund

85 East 8th St., Suite 150

Holland, MI 49423

This money will then go into the account and be disbursed to Kate and I as needed. It is Kate and my desire that these gifts be for the benefit of Max and Wes and not Kate and Mark. The committee will ensure that the funds are use appropriately. This will also be an anonymous donation with only the committee members knowing the origin of the funds. This has become an important feature for Kate and I as it allows us to focus on where and from whom these gifts are really coming from: God. For those of you that are technologically inclined, we will also be setting up a Pay Pal account tied to the bank account, I will get those details on the blog when they become available.

As always, please do not interpret this topic as a plea for money. We trust that God will provide for our needs as we focus on the needs of Max and Wes. This is such a difficult topic for me to discuss openly because I feel very unworthy.

For those of you that may have sent checks over the last number of months, I apologize for not depositing them. I was really having a hard time with how to best deal with the funds and make sure they are used appropriately and thought it best to get some outside parties involved. And even after we decided how to handle it, it took quite some time to get the account set up. The bank was convinced that this fund was really just a cover for a terrorist organization led by the mysterious Max and Wes Wiersma. We very literally have a document signed by Kate, myself and the three committee members that was drafted by a lawyer detailing how the committee will work and the funds will be used. Banks these days, I tell you what.