"Pay No Attention to the Man Behind the Curtain"

The title is from the Wizard of Oz when Dorothy & Co. are wondering who is behind the curtain. I have only seen the movie once with the actual dialogue many more times to Pink Floyd's Dark Side of the moon. I prefer the latter. Anyway, I had to comment that today has been quite the roller coaster. Let me explain.

I visited Jamie & Will this morning at the hospital, dropped off clothes and all the essentials. Will looked decent and had made some minor improvements from the previous night. Jamie shooed me off to work as I reluctantly read my blackberry and realized I had to deal with annoying customers all day! As you can imagine work was less than productive (I did buy some new books on EBay though). Halfway through my lunch appointment Jamie called to have a doctor try to get my consent for surgery. This was the first time I heard he may have Necrotizing Fasciitis, I had a basic idea what it might be (I translated it to "dead face" and wasn't too far off), she then proceeds to say they need to do surgery which may result in him not being able to raise his right arm, smile, feel the right side of his face, etc. Quite fun!

Fast forward to tonight. I feel like we are in an episode of "House". Every few hours it feels like the doctors change directions on what they think the cause is. They now believe there is no Necrotizing Fasciitis (which is good) but they still don't know what the problem is (which could be worse). The CT scan revealed evidence that it was not Necrotizing Fasciitis but also didn't tell them much else except he was making improvements. Now I realize that there is not much a doctor can do under these circumstances. The update stats show late onset GBS has a 0.77% chance of occurring and recurrence is even more incredibly rare meaning there isn't a lot of data to draw upon for this. So we sit and wait. He does have GBS but we don't know why it keeps coming back and that is their concern. No one wants to try surgery yet as it isn't "necessary" but may be to find what is the underlying cause.

Exhausted

These pic's pretty much sums it for little Will right now, after a rough day he is content once again in Daddy's arms. I am not sure which was tougher on Will, all the blood draws and poking from several different Doctors every half hour, or not being able to eat since 10:30am. Either way we had a pretty tired guy 0n our hands tonight. I am sure the Morphine and Lortab had something to do with it too :) We are so thankful to have so many wonderful Nurses, Doctors, Specialists, and Teams looking after Will right now. We ended up NOT doing the surgery tonight and will re-evaluate things in the morning. The Ear, Nose and Throat (ENT) Doctors are highly recommending the surgery and are working closely with the Infectious Disease Doctors (ID) to determine the best plan for our little guy. After looking at the CT scan they decided they wanted to watch things close through the night, continue all the tests, and have another CT scan in the morning and see what things look like then. Again he has tested positive to GBS and has the same cellulitis as before so the are confident they have the right meds, its just finding out whats underlying thats causing all this.

The Invasion

Little Will is most likely heading into surgery in just a few hours. The Doctors have just clinically diagnosed him with having Necrotizing Fasciitis along with testing positive with Group B Strep (GBS) again. They are very concerned because Will's blood is not showing hardly any improvement with all the antibiotics he has been given, and they want to be very aggressive so it doesn't get worse (it can move extremely fast in infants). His swelling is getting better under his chin but is now spreading farther back behind his ear and it is even more sensitive when touched. We just got back from another CT scan right now and are waiting for the final word on if surgery is for sure needed.

We have asked all the right questions and just have to trust in the Doctors opinions and abilities. There are many scary risks to the surgery because of many important nerves that happen to be right where they will be working. It is scary to hear that your little baby boy might permanently loose the use his shoulder muscles, sensation in his ear, jaw, and face, and the worst is his ability to smile. Not to mention the risks of surgery itself.

Lemonade, or Something Like That

When life gives you lemons your suppose to make lemonade right? I think we have had enough lemonade this summer and are just trying not to get to frustrated with the sour taste in our mouth. We were really starting to settle into being "normal" parents and cant believe our little guy is sick again. I am sure there is some reason for all of this but is hard not to get down while watching your little one in pain. I don't want to sound like a broken record but this is by far the hardest thing I have ever had to deal with in my life. It seems like things should be easier this time around since we know our way around and half the staff at PCMC, but it is still an emotional roller coaster. The PICU is filled with familiar faces that adore Will but in ways it makes it harder for me to stay tough and not have a major breakdown.

Good news and bad news. Bad news is they still are not positive what infection Will has and what is causing the relapse. They are uncertain if it is the same kind cellutitus as before and are trying to figure out any underlying problems that could be causing it again. They are assuming it is some form of strep again but there are a million scenarios they are sorting through. They are concerned with the infection entering his heart and have done an Echo to monitor whats going on. They are starting a full workup tomorrow to check out lots of things that I will explain tomorrow. We are also most likely heading home with a PICC line again which means limited visits and outings for me and Will :( But there is most definitely a bright side! Will is breathing good and has managed to stay off oxygen and has not needed to be intibated or paralyzed so far. They are limiting his fluids so he shouldn't get as puffy as last time and are working on getting us moved out of the PICU to a normal room. His Spinal Tap and CT Scan look good and they are watching very closely for meningitis and/or new developments that might need surgery. Overall he is definitely not as sick as last time, we caught it unbelievably early. Round 2 here we come!

Three for Three!

As many know I am quite a geek, I love math, science and most recently statistics. Our beautiful boy has decided once again to prove to his papa that statistics mean absolutely nothing when dealing with medicine (at least that is what I am concluding, any Doctors are welcome to correct). So as we just crested his third month of life we were getting excited to begin going for little hikes, taking some more fun pictures, and were getting very comfortable with Will. Will however has decided he REALLY loves the hospital! So this officially marks that he has been in a hospital every month he has been alive.

At 5:00 PM when I got home from work last night Will once again started crying and was somewhat inconsulable. He wasn't nearly as fussy as last time so Jamie and I assumed it was gas or upset stomach (there were plenty of signs of it) however as time went on breathing became shallow and temperatures began to rise. When he broke 100.00 farhenheit we decided it was hospital a hoi hoi. We enjoyed all the same jazz as last time in the ER (saw a lot of the same folks that helped us last time) however he did not get intibated.

So rather than spell out all the details, largely because I am a little sleepy and should be working right now, I will summarize that Jamie and I are hanging out at the PICU at Primary Childrens again for a few days. He has something in his blood again but no one knows what, his meningitis came back negative however it is possible it could be a false negative so they will test again later. It looks and feels like GBS again however the probability of that is incredibly slim so they keep saying "or maybe a staph infection". Regardless he will probably get a PICC line again and be on medication for at least 14 days again.

One thing that is surprising to me is the reality of a mother's intuition. Jamie decided to do the baby blessing on the July 20th when he was happy and healthy. Had we waited until the normal time will may have been talking to us during the blessing!

The Brave Little Toaster

I just wanted to let everyone know that William and Mommy are headed on there first road trip! We decided that after the blessing tomorrow, I mean today, ok seriously why am I still up at 1:30 in the morning??? Any who after the blessing I am taking advantage of my family coming down and have convinced Grandma Bev to ride with me back to Idaho Falls. So I guess it didnt really take much convincing, love ya mom :), and I am way excited to have the help on the drive! I plan to stay Sun night through Thursday morning and would love to meet up with old friends. Let me know if you want to get together! Email me at jamie_leigh_21@hotmail.com or feel free to call or text me if you have my number. Wish us luck on our first little trip!

It's About Time

We wanted to let everyone know that we will be blessing Will next Sunday. With all the craziness that has happened we are excited to finally get the chance to bless him. We know it is short notice but we just got approval to bless him sooner and we aren't going to chance waiting around for fast Sunday! This is the official invite and we would love to see you all there. We do however understand if you are unable to attend due to such short notice, no worries! We just want to make sure everyone knows they are invited to attend. Mike will be asking those individuals we would like to stand in on the blessing and plan to keep it pretty simple. We will also be having a BBQ at our house afterwards and ask that you bring your own meat. Grandma Stacy will be coordinating the other food so please call/email her if you would like to bring something. Please RSVP by Saturday so we can get an idea of who is coming.

Our Sacrament meeting starts at 10:50 and the below link shows the directions from our house to our church. Just make sure you drive PAST the first church on 1500 South, our church is the second one on the same road (gotta love utah).

http://tinyurl.com/62jzdo

Happy & Healthy

William is such a tough little boy and amazes us each day with his strength and endurance. We are happy to report that Will is officially 100% healthy. No oxygen, no PICC line, no antibiotics, and no more complications! Over the 4th of July weekend we had more blood drawn and labs run and were pleased Monday morning to find out things were looking good. So good in fact that our Doctor immediately ordered that Will's PICC line be removed. So Monday night around 7:30 we got to hold our little boy for the first time without equipment or IV's to worry about. It was and is the best feeling in the whole world. It is so amazing to have him healthy and are so thankful to have such a little fighter. There was no better feeling than getting to throw away all of his accessories from Home Health. We are so grateful that there will be no long term effects from all of Will's trials so far and cant wait to have things be normal for a change!

Like Father Like Son

Nothing is more cute than watching Mike adapt to fatherhood. He is such an amazing Daddy and Will LOVES him so much already. The pic on the left makes me laugh, they are definitely two peas in a pod! The other night I looked over to see them vegging out watching Discovery Channel in the same exact position. Honestly how can you not laugh at such a cute pic! I can only hope that Will continues to follow in his Daddy's footsteps and becomes an amazing man like Michol. I am so lucky to have such a supportive husband that is so involved and willing to help. Mike is always so willing to help and yes he truely does take the night shift with Will! I couldn't make it without him! Muah honey, I love you!

The Scotterhoofenstiens

I hate being called by the wrong name, I hate it! Not so much when I am called John (my first named) or even My-chole as many people do. No, my anger comes from the fact that a tool of my daily work life; Outlook, has an option of how you want to file someone's name. Thus sometimes I am in peoples address book as "J. Michol Scott" and other times as "Scott, J. Michol". It is when the latter occurs that problems arise. You see many people whom I am assuming are just lazy, will continue a long email chain with 10+ replies all calling me Scott. I will call them by their obvious first name every time and sometimes even enquire if a chap named David prefers Dave or David just to get them to think. The last successful attempt to get someone to realize the error of their ways was to have them check my signature that is at the bottom of my email which states my name and contact information.

Thus I have determined my only solution is to simply change my last name to something that could not be mistaken as a first name... thus from here on out me and my posterity will be known to all mankind as the Scotterhoofenstiens. It has a nice germanic ring to it! I can finally get into Oktoberfest with a name like that! But alas, I should realize that if they think my last name is "J. Michol" what chance do I have of preventing such problems in the future?

Please, my name is Michol, my wife is Jamie and my son is Will. No one in this family should be called Scott unless they are on the basketball court.