Thanksgiving in August?

After looking back over my last few posts, I have decided enough of the Debbie Downer here. Sorry everyone! Instead of being so concerned about what goes wrong I NEED to focus on the positive. This week has been a really good week and I am so thankful when things stay non eventful! On Tuesday we were instructed to stop Will's meds due to his constantly low white count and are optimistic because this also means they are confident they have killed all the yuckies! We just have to flush the PICC line once a day and then hopefully at our follow up with Infectious Disease next Tuesday they will remove the line and send us on our way.

I am so lucky to have little William in my life and he has really showed me the important things in life. I have experienced so many raw emotions over the last 4 months and it has truly made me such a stronger person. I cannot imagine going through this without Michol and I am so glad life led us to each other. Looking back on different situations in life I can truly say the man upstairs was preparing me for Mike. Making sure I had to go through some tough things to truly appreciate such an amazing guy. Mike always has way too much to deal with and yet always seems to put our little family first. It amazes me every day.

Not to get all churchy but I have to express my gratitude for the guidance we have both received through all of Will's struggles. I am so unbelievable grateful for the priesthood and the true power that it can have. It has been so invaluable in little Will's life so far. It not only aided in keeping Will strong but it showed us the signs when he was getting sick both times. All the Doctors sat back in amazement at how fast "we" caught things and I know there was something more powerful helping us protect William. It scares me to think of what could have happened without the priesthood in our home. Every day I thank Heavenly Father for trusting us with William and giving us the opportunity to be his parents. I cant imagine anything more important to do in my life! Sorry y'all, you know I get irritated with people that always talk churchy but I just had to share a little with everyone.

Most of all thank you to YOU! If you are reading this you are a true friend and your love and support is more than words can ever express. We know we didn't always handle things perfect the last 4 months and are sure we offended some people but we just had to worry about us. Thanks for sticking it out with us. We love you and need you in our lives!

Why not make a quick stop at Primary's?

As if my day wasn't exciting enough on Friday, it only got better at Will's doctor appointment. As our Doctor went through all the basics and did his usual poking and prodding, we discussed any new concerns with little Will's health.
Let me back up and explain a little of what has been happening with Will. Last week Will started having some really strange and scary breathing episodes. He will be breathing fine and then all of a sudden he starts sucking in air really hard and fast (kinda like when they have been crying for a long time and are trying to catch their breath). Being kinda used to scary stuff by now I watch and observe Will and see that he really isn't struggling for air (not turning blue etc) but I call anyway and explain everything. They tell me to continue watching and if it gets worse to bring him back in asap. He continued to do this strange breathing once or twice a day but it didn't seem to be getting a lot worse. So I wait it out until our appointment Friday.

So at our appointment I again reiterate my concerns with William's breathing. With thorough discussion Doctor Allred decides it probably wouldn't hurt to do a chest x ray to check the placement of Will's PICC line. At this point I am pretty calm and not too worried about things. So I immediately head downstairs to the lab. The way they do a chest x ray on a awake baby is much harder than when he is sedated and drugged up. It is well worth explaining so you can understand my roller coaster of emotions. Stay with me people!

They have this little cart thing with a wood slab cut with a round hole with a little bicycle seat in the middle for the kids to "sit" on (probably not as difficult with an older child than with a baby). So I place Will on the little seat and try to sit him up as upright as possible. Then there are curved plastic pieces that they try to wrap around his body from each side and clip into place. Meanwhile I am trying to hold his arms above his head, support his head, and keep my arms out of x ray all at the same time. Sounds easy right?! The tech kept pushing his little body around and giving him nice plastic burns and pinches from trying to position the pieces correctly. The clips kept popping out of place and his PICC line arm is so scrunched against the plastic things he is screaming. So she finally gets the x ray and I head back upstairs slightly traumatized.

Doctor Allred pulls up the x ray and we check things out. I am getting pretty knowledgeable and can tell something just isn't right with the placement. Doctor Allred explains it looks a little "off" and says we might need to head up to Primary's and have them pull the PICC out a little. At this point I am starting to get a little worried but realize it probably isn't a big deal. So I wait while Doctor Allred calls up to Primary's. He gets the specialist on the phone and has him pull up the x ray. I am close enough to Doctor Allred's office that I can hear the whole conversation on speaker phone.

The specialist says things definitely don't look right and it appears the PICC has migrated in (which apparently never happens, we are really doing good with statistics lately) into the right atrium of William's heart and is pushing against the wall of his heart. So here is where I start to panic a bit. Then the specialist proceeds to say that it can severely damage the wall if not puncture it altogether. Ok so now I am really freaking out. Surprisingly still able to fight back tears though. The specialist says to repeat the x ray this time with his arms to his sides since this is normally how PICC placement is checked (not with arms above). So we head downstairs again.

This next x ray was by far much worse the second time around in the little contraption thing. Trying to pin his arms down and keep him sitting up means his little face and nose gets smushed into the front of the thing. Again the clips wont hold the plastic things in place and Will gets even more fun plastic burns and pinches. The tech decides to switch out the plastic things for a bigger size and we attempt again. Keep in mind the whole time Will is SCREAMING. We try again and in our struggles one of the plastic things pops off and hits the floor sending a dozen pieces flying everywhere. At this point I grab Will and say that's enough, there has to be another way to get this x ray. The tech decides to lay him down and get a nurse to help hold his arms down (why didn't we try this earlier) and surprise, it works perfectly. So we head back upstairs.

I wait while Doctor Allred tends to other patients and try to keep it together (as I am sure he is getting tired of seeing me have a meltdown every time we come in). We pull up the new x ray and get the specialist on the phone to check it out as well. To my relief, false alarm!! Everything looks good with the placement when the correct position is used for the x ray (thanks for the scare little techy). So all in all things are ok and no need to head to Primary's. We are still unsure what Will's new breathing is being caused by but are watching closely to keep him safe. Man I cant wait for things to be "normal".

Home Health 101

Ok so let me vent a little of my weeks frustration with the wonderful folks at Home Health. Here is how my week went down. Monday was the normal day for labs to be drawn and Will's PICC dressing to be changed. It was no big surprise when our Nurse called to say she would be late again. Not really a surprise since every week she is at LEAST 15-30 min late. She then called back to say she would not be able to make it since her car broke down. Ok I'll give her that one. So instead she sent another wonderful Nurse. This Nurse was at least way more efficient in drawing labs (its bad when we can pick apart everything they do wrong) but had some major difficulties changing the PICC dressing. Granted she doesn't usually work with Pediatrics but she left without the dressing even being pushed down and adhering to Will's little arm. Humm, so if I remember correctly that's a BAD thing in lieu of preventing air/germs/icky stuff from getting sent straight into Will's body and getting pumped all throughout him. Call me crazy but I just wasn't going to let this fly. I tape it down and wrap it up and called our normal Nurse first thing Tuesday morning (per her instructions if there were any problems with the dressing change). She of course didn't answer so I left her a message. My amazing nursing skills were holding up pretty well so I wait patiently for her to call me back. Finally Wednesday afternoon she calls me and lets me know she will come Thursday between 1030-1100am. I ask her if I should call the scheduling department and she says no, she will just take care of it. Ok no biggie, whats another day right? So we wait. And wait. And why not wait some more. With our nurses track record I plan on her being late so by the time 1130am rolls around I am a little annoyed. I call her up and she politely tells me she forgot and will not be able to make it. So now I am really getting upset. She explains that she will have the Nurse Friday come and change it. Ok so really, whats ANOTHER day? I told her Will had a check up at 2 so they needed be here in the morning. So this morning I wake up and wait, and wait, and wait. At 1100am I wise up and decided to call scheduling and double check things. To my surprise a Nurse WAS scheduling to come see us (yeah for something being done right) and they paged the Nurse to have her call me. I was a little less than ecstatic when Nurse #2 (the incompetent dressing change one) calls me back. She then proceeds to tell me to pretty much just put a band aid on it, wrap it up, and wait till Monday. Easy for her to say right? It's not her little baby that's sick. So instead of arguing to have her come and "attempt" another dressing change, I hang up and bust into tears. Seriously what are these people thinking? As if things aren't hard enough lets throw this in the mix too. It is frustrating that people cant just do their job. Ya know the job we are paying them to do. So Mike is going to "take care of things" and hopefully chew some peoples butts out along the way. Until the Will and I wait, trying to be patient.

Tech Savvy, or not

Ok so if you are looking at our blog before Mike gets a chance to fix my booboo's sorry. I thought I had our page updated and looking cute but I somehow messed things up a bit! Hehe, good thing for brainy husbands.


Oh and if your looking at our blog and it looks perfect, disregard the above note. I did it perfect in the first place :)

Cabin Fever

The toughest part about Will's IV therapy PICC line is our limited contact with the outside world. We are instructed to stay away from places like the grocery store, anywhere with lots of kids, and church (wohoo) in order to be as cautious as we can for little Will. As you can imagine this results in some intense cabin fever for BOTH me and Will. Luckily we have amazing friends to help get us out of the house and keep us sane! Last weekend we headed up to the Uinta's for some great fishing and fun. We love you Clark and Ashley!

Party On Rock Star

Last Friday was Aunt Whitni's fabulous 21st birthday! We had so much fun watching her open gifts and eating her amazing strawberry shortcake. We had a sleep over and got ready to go boating. Mike was generous enough to stay behind with Will (I think a little bit of guilt from the PS3 purchase the night before helped a bit:) and we headed to the lake. We had so much fun testing out our tubing skills and swimming around all afternoon. We were just getting ready to brave attempting to water ski when a huge storm rolled in. It was the worst hail storm I have ever seen! The little pellets stung so bad when the pegged your bare skin and it was pretty intense to be out on the lake. We still had so much fun though!

Mister Bones

Life seems to get so busy when we make it out of the hospital and don't have the wonderful nurses to help out. Sorry for the delayed post! Little Will is doing good and adapting well to being home again. We got released late Saturday August 2nd and it is so nice to be home. We are back acting like doctors again and get to administer Will's meds via his PICC line once a day instead of every 6 hours like last time. It is much easier on Mom to say the least! On last Wednesday Will went back into PCMC for a Bone Scan which was a little scary because of the need to be sedated again. Will was so tough and didn't fuss too much despite not being able to eat for many hours before. Will did great and came out of the sedation much happier than he did after his PICC line. I am sure it was due to a lot less pain! Will and I got to spend the next 12 hours yet again in another wing of the hospital. This time we had free snacks though! Will was watched carefully until given the ok to be released at 2am Thursday morning. We were both a little tired and ready for our comfy beds waiting at home with Daddy.

So the results are in. The bone scan and the immune deficiency tests came back completely normal! So its a relief and a frustration all in one. We are so thankful it is neither of them but we still have no idea what caused the relapse. I am trying not to be super paranoid over every little whimper Will makes but it scary considering all that has happened. It is turning out to be rather difficult. This time the Infectious Disease Doctors at PCMC are monitoring Will VERY closely and running labs every week to check his progress. The Ear Nose and Throat specialists advise that if Will should ever have another neck infection that surgery is necessary to check out what's going on inside. We also get to see our Pediatrician once a week and its a good thing we love him so much!

We wanted to say thank you to our families and friends who have supported us so much throughout all of our ups and downs the past few months. We couldn't have made it without all of the many prayers and fasts in our behalf. We recognize the sacrifice and we just want you to know how much strength we received from them. We pray this is the last of the struggles for little Will for a while and are thankful every day that we have him in our life!

Cerberus

Mythology has always been a great interest of mine. I love the stories, the symbolism and noticing artifacts of these stories in our modern society. In Greek Mythology Cerberus was the guardian of the gates to the underworld. Today we view underworld as meaning hell, however to the Greeks it was simply the afterlife. Heaven and hell existed in the same realm; just those living in hell couldn't enter heaven; however those in heaven could pass through hell and even had to in order to reach heaven.

As I was taking pictures of William our ferocious hound Bella decided she needed to guard her family. Somehow I must have appeared like a threat (must've been the extra slice of pizza). As she snarled and growled at me I was able to capture this humorous moment which I just had to share. Only afterwards did I think about Cerberus and how to some extent this picture does represent that entire process. Our little guy has had to pass through hell to once again be held in the loving arms of his mother. This I would say is the closest thing to heaven in this boy’s life right now. In reality it's the closest thing Jamie and I have to heaven as well.

A Friend in Need is a...

I apologize for the delayed update from Jamie and I, things are hectic; but if you are at all aware or have read any of our previous post before today I am sure you are aware of this. While many of you may already know Will came home on Saturday. He still has his PICC line and is on heaps of antibiotics. No one really knows what is causing this to keep relapsing and thus we get to get blood drawn every Monday and follow up with the pediatrician weekly. On Wednesday we get to do a bone scan to determine if his bones are infected and if any are Will can enjoy a lifetime of enjoyment through metal detectors. It is highly unlikely though that this will happen.

The good news is we administer the antibiotics only once a day at 3:00 PM. This is much better than the every six hours we were previously on. This will continue for a month so please enjoy pictures for a while until he gets the PICC line out and everything is clear.

It is funny how in comparison to last time this time I find myself much less grateful to the Doctors that worked on Will. It wasn't that they did a poor job, they performed excellently, rather I think it is that we are just so burned out from everything. I have mentioned to Jamie numerous times that it is interesting to me how many analogies can be drawn from this experience and comparing it to our relationship with God. For me at least it has been an incredibly insightful journey into understanding how our Father must feel for all of us while we go through our own struggles in life. While the analogies are many and quite personal let me summarize by saying it has been nice to know that Will has at least two fathers by his side helping him along; just like the rest of us if we will but ask.

"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.

Is there a Doctor in the house?

With all the hype and excitement of my brother-in-law graduating from Med school last Saturday, Mike and I decided we did NOT want to be left out of all the fun. I mean seriously who needs to go to school for however long it takes to be an ER Doc like Justin? Why not just keep admitting your little one and on the upside learn lots of really cool things? OK not particularly how anyone would want to learn I suppose, but we are finding ourselves highly knowledgeable these days (Mike is a cheater with a head start from interning in Pediatric Surgery.......no fair). All joking aside, congrats Justin! He is already an amazing Doctor! Besides with all the medical bills starting to roll in we are looking forward to all the free services :)

In the mean time here is what we are doing to try to keep with him y'all:

Every 6 hours we get to infuse Will's Ampicillin via his PICC line. It takes us about an hour from start to finish. We start by washing our hands (of course) and then sterilize and prep all of the needed items: 3 syringes (2 with saline, 1 with heparin), 1 ampicillin, 1 pump, alcholol pads, and sterile caps. Then we get to work. We start by flushing the line with saline to make sure it hasn't clotted over then we hook up the ampicillin and turn on the pump. It takes 35 minutes to infuse and so we sit and wait.......Will usually sleeps while we just sit........... Once it has finished infusing we flush the line again with salin and then flush with heparin so it doesn't clot. Then we sit back and relax for another 5 hours or so until we get to do it all over again!

Ok, so maybe we aren't particularly ready to be doctors anytime soon! Our small experience is plenty enough for us. We are just hoping Will stays out of the hospital in July, that will make it the first month of his little life WITHOUT being in an ICU. Keep your fingers crossed with us! And Will, lets NOT make it 4 months in a row. We are so grateful for such a tough little guy though (and a pretty tough Dad too)!

Monkey Business

It may be the exhorbant amounts of junk food people keep bringing us or the joy of having Will home pulsing through our veins but Jamie and I are just loving to write about all things Will-ish.

You may remember from our previous post that William has a wonderful friend named Milton. Milton is a monkey who stays by his side almost all day and definitely all night. He sleeps next to Will and keeps him comforted. The best part about Milton is that he only has the head of a monkey; his body is a blanky. Thus hugs come a'plenty.

It was during Will's second trip to the hospital that Milton finally came out of his wrapping. Milton slept on or beside Will each and every night. Milton had it pretty easy as his companion was completely paralyzed and couldn't squirm away. Well one night William decided to even the score and prove to Milton that he did yet have one last secret weapon. As tends to be the case with Will genius strikes at 3:00 AM! Out of nowhere diapers were erupting with the pent up pressure of four days. As any good friend would do Milton courageously gave of himself to protect the nurse on night duty. Covered across his body with the contents of Will's diaper Milton got a quick dunk in the cleaner and then was shipped away from Will in his biohazard suit. Jamie and I could not help but giggle at the sight of Will's little buddy stuffed in a biohazard bag of all things with his little monkey head peeking out.

Milton needed a bath, and so we went home and gave him his own private bath to prepare him for a lifetime of servitude to his buddy William. We have extra Milton's on order knowing there is no way one will make it throughout Will's childhood. Thanks to grandma Bev for finding Milton!

Me and My Little Owl

Jamie was not feeling well last night. So bad in fact that it had completely debilitated her. She could barely move around between all the aches, pains and headaches. Thus like a good heroic husband I charged in upon my noble steed and rescued her. Well my steed was actually equal amounts of sleep deprivation being supported by my intense male ego and illogical sense of joy of being a rescuer! Nonetheless it was my joy to take care of William all night.

Our readers may remember a previous post (On Daddy's Watch) in which I ran into a similar debacle. Will decided to up the ante this time. From 10:30 PM to 4:30 AM Will taunted and teased me with the idea that he may eventually sleep. We watched Harry Potter 1,2 & part of 3 together to pass the time. He would sleep for 15-30 minute intervals in his crib (we slept in the nursery so Jamie could rest), just enough time for his caretaker to just doze off before the bellows erupted. While this may sound a bit negative it was honestly just about the best time I have had in a long time (I'm an insurance broker remember; we don't have much fun). It started to become almost an enjoyable competition; who would last longest? In one corner we have the father with a decade's experience staying up to all hours of the night studying (or playing his geeky computer games) and then dragging his worthless carcass to work. In other a freshly minted bundle of energy who is gleaming with joy to be out of the hospital and ready to run a muck. Well my money was on experience... my money failed me.

I stayed in the race pretty well until the 3:00 AM hour broke and Will was still toying with me. I kept dozing off as I rocked him in his rocking chair. We would bounce from rocker, to daddy snuggling with him on the floor (my bed), to the gentle-vibes mattress, and back to the baby bean pillow. Every fifteen minutes a new location. Everytime I thought I had the solution as he would doze off, then POW eyes wide open and he would call to me like the sirens to the sailors of old (except the naughty parts of course). Well around 4:00 AM I tossed in the towel and lucky for me Will decided to relent having won the match. I awoke at 5:45 AM with him reminding me it was time for food and drugs (ampiccilin). We took care of that and napped a tiny bit before asking Mom for some respite. As I stumbled back to the guest room Will couldn't help but give me this self-assured smug smile. Thank goodness Jamie is feeling better; my ego can't handle anymore of this.

The Fallout

Today we made the trek down to our kind pediatrician to check in on William. Alas, I am getting ahead of myself. William has come home again! We made it home late Tuesday, we get to administer ampicillin to him every 6 hours via his PICC line. It is quite scary for his parents but it is really not supposed to be that big of a deal. Will has been a bit fussy since returning home but is quickly appeased. The ampicillin causes a lot of stomach ache and diarrhea which is the main cause of his fussiness. Plus having a tube through your arm to the top of your heart can't be enjoyable! He and I have been enjoying some late night conversations about it, it seems to be onesided though but we still try. Anyway he is home which is nice. Back to the appointment.

So Dr. Allred was kind enough to go through all the scary stuff the other doctors kindly kept away from us. We knew the situation was quite serious as they rushed him into the ER and intubated him, however the raw data is what really spoke to his poppy. He had a CRP rating of 17.1 which is extremely high for an infant. We wanted to get a basis point and the doctor said below 1 is normal and anything above 3 is of high concern... hmmm... 17 isn't that much more than 3! His blood was just loaded with group B strep in so much that his white blood cells were almost non-existent because they had all thrown themselves at the mercy of the strep B. In conclusion the doctor concluded "he was a very very very sick boy". As he relayed that were you to have a marshmallow roast with a bunch of pediatricians they would all share their strangest strep B stories all night, this is his most amazing after thirty years of medicine. He went on to explain that the retropharyngeal cellulitis in conjunction with strep B is incredibly rare; less than 100 cases a year. Will was trying to prove to his daddy that statistics didn't mean anything by being one of the 1,100 annual late onset group b strep patients. I'm getting the picture now, so much for my masters explaining everything! He went on to explain that most cases end up in spinal meningitis which was amazing Will did not and that most stay in the hospital a month. It has been amazing. The doctor just sat there in bewilderment over everything; I think we are still trying to realize we have been in the hospital.

In conclusion though one important fact was stressed over and over again to us. THERE IS NOTHING THAT WE COULD HAVE DONE TO PREVENT THIS. It is important to realize that Group B strep is really carried by many of us but the only way to get it is when you are born. There is nothing more. Additionally he stressed that Jamie responded in the absolutely perfect matter by taking him to the hospital as soon as symptoms became apparent. Jamie is an amazing mother who not only has amazing motherly intuition but can already understand her son's needs whether by her own accord or that of the spirit. He concluded that Will is alive today because of how his mother responded and took care of her son. So for any of you who may have been in contact with Will in the past two months rest assured there is nothing you did to cause this, and more importantly trust Jamie as she helps her son grow; momma knows best.

So now we are back to square one; just home from the hospital. Still planning all the fun trips in the future with our little dude. We can't wait to go hiking, boating and traveling with our little man. The greatest reassurance is that none of the reasons he has been in the hospital will affect him the rest of his life. He won't even be able to tell he was in the hospital!

Thank you all for your support and concern throughout this whole ordeal. We appreciate the gentle concern and allowing us to deal with this in our way. We hope the blog has allowed you to know what has been going on.

P.S. As a side note the doctors have requested he not be visited for at least a week after he is off medication so it will be a bit still before we get to show him off.

Happy + Sleepy

Jamie and I are so exhausted, I think we are finally starting to suffer the crash after the high of mass stress and running on adrenaline! We both were dead tired last night at 9:00 PM which is strange for night owls like us! So there's the bad, the good is that Will is doing AWESOME!! They pulled out his feeding tube and he is exclusively on bottle or mommy. They just turned his oxgen off and still high stating so we are stoked. Lets hope he keeps this up! On a side note, when we asked our doctors & nurses if anything could possible be caused by our puppy Bella they all laughed, so don't worry all you animal lovers the pups are all right with Will!

And the diagnosis is........................

So after 2 CT scans, 2 spinal taps, a million blood tests and gases, chest x rays, right lung collapsing, too many d stats, a blood transfusion, a truckload of fluids, and being tubed and relying on a ventilator we are finally heading in the right direction! The official diagnosis is group b strep that some babies can get during delivery. During pregnancy you are usually tested for this before you go into labor so they know what to treat you with. Even though I had not been tested yet, during labor I was given several doses of penicillin that is suppose to treat it. Usually if a baby comes down with the virus it shows up shortly after birth, not 6 weeks later like in Will's case. Needless to say the doctors were a little confused. It is very scary because it often times turns into menangitus which we all know can be fatal. He also contracted a rare form of cellulitis on the right side of his neck that showed up at the same time just keep things interesting. All around he was just a really sick little boy so its no wonder his breathing shut down.
Good news though! He is responding really well to his treatments and looking a million times better. He is being treated with antibiotics and is not growing anything back in his cultures (this is good it means he is getting better)! He is also starting to pee like crazy which means his puffy body is slowly starting to decrease and he is looking more like himself again. They are starting to try and wean him off the ventilator and they have started to do spontaneous trials to see if he can sustain breathing on his own again. So far he is doing great and being such a tough boy! They are starting to cut down on the sedatives and they are no longer giving him the paralytic so he is starting to wake up more and move around.
We are so thankful to see glimpses of our little boy again and are excited for all the small things. It is so awesome to recognize his little movements and know that he is still there. We are so proud of him for being such a big boy!

World of Willcraft....

GEEK, yes that's me. So if the title didn't give it away, or you haven't known me more than 10 minutes this video should explain my geekiness.

Well this video will walk you through the entire set-up that surrounds him. There are so many pieces of medical equipment. This will give you a brief taste of the chaos.

On the sidelines

It is so hard to be a bystander in my sons life again. It is weird to transition through all of the ups and downs of the last 7 weeks. The hardest part is having no responsibility in William's well being again. The PICU is nothing like the NICU and I don't have the opportunity to participate in anything, especially since he is so sick. The only thing I can do for him is pump breast milk but now my milk supply has diminished so I cant even provide that for my son anymore. It is so hard. I am responsible for none of his needs and I just sit by and watch while everyone else tries to make Will better. I cant even hold him and tell him everything is going to be alright. It is the most difficult thing I have every been through in my entire life and I would not wish this on my worst enemy..........ever. I am grateful to have a supportive husband who stays strong through all of my moments of weakness. He is such an amazing man. There is no way I could make it through this without him. I know that this will make us stronger and that there is great plan behind all of this misery. I just wish it were easier to handle, but then I guess what would be the point of enduring this trial. For now I just have to be content with watching on the sidelines.

The Gauntlet

So for those of you who may not be up to date or aware of the current happenings at the Scott Clan we had another little bump. Will decided that he missed all his friends at the NICU and wanted to make some new ones up at Primary Children's Medical Center. Alas I seem to have gotten ahead of myself.

Jamie called me on Monday right smack dab in the middle of lunch. I could barely discern what she was saying over Will's screams of injustice! He had been crying since 10:00 AM and hadn't stopped. For those who are familiar with Will, or have read this post, it should be obvious that our boy doesn't cry unless he has a reason (needs a change, hungry, binky in his ear) and quickly calms down once a need is satisfied. When I arrived home about 1:30 he still hadn't stopped crying. I held him while mom took a nap. He calmed down for a few moments in between outburst. Unfortunately though dad has a job which requires talking to people so at 3:30 Jamie took over again so I could join a conference call. The good news is that the conference call went well.... the bad news is Will didn't. Within 20 minutes he became completely congested and was struggling to breathe. Oddly his nose had almost nothing; it was all in his mouth and throat. We would suction it all out and it would reappear before we were finished. Additionally (unbeknownst to Jamie due to dad's super sleuthy skills) his right side of his neck began to swell effectively taking out what was a neck. In calling our wonderful pediatrician's office the nurse quickly said 'Just come down to KidsCare it isn't a big deal, but they can't see you for an hour and a half'. Being good little sheep we followed.

We bundled up Will and I suctioned him as mom drove with all care and haste. We arrived early to KidsCare to be greeted by a nice elderly lady who was completely incompetent. Yes I am harsh, but she was. So after bringing in ALL the other patients (skinned knee, fever, mom's jonesin' for crank) they let in the child with respiration problems. Seems logical to me. Immediately upon getting in the on-call doctor is concerned and requests and ENT (ear nose & throat) consult. They all say rush up to Primary Children's. Thanks to the nurse at our pediatrician for not asking (or possibly caring) what was going on we got to watch our child suffer for two and half hours for no reason. We back tracked to Primary Children’s.

Primary Children's was ok, other than no one had relayed the information from the KidsCare to them so we did the whole thing all over again with a new Resident. I'm sure he is/was good at his job, but as a parent you want the Chief of Medicine not the newb. We hung out in a small little room for 5 minutes until the nurse freaked out, then 15 minutes in the other room 'til the resident freaked out and then FINALLY we got treatment. While it seemed like a blessing Will was immediately encircled by doctors, specialists & nurses. Literally 12 to 15 people would encircle him as they tried anything to get him back up. Long story short they had to shove a pipe down his throat to bypass his upper respiratory problems. They induced paralysis so the ventilator could take over. By this time his neck was no longer visible as it had completely swelled up. He was breathing but no one knew what the problem was. Two hours later we were admitted to the PICU (Pediatric Intensive Care Unit).

Hours and hours pass. We still have no idea about why these problems have come on, no bug bites, no respiratory problems (asthma, pneumonia, etc.). The spinal tap (cerebral spinal fluid) yielded no disease at all. This was a mixed blessing. He didn't have meningitis but we still didn’t know what he had.

After spending the night sharing a 2x5 couch Jamie and I were pleased to find that they had found something in his blood and that he had a strong reaction to antibiotics. Unfortunately they still didn't know what it was. The rest of the day passed away with Jamie and me hangin' with our boy. Jamie's mother was kind enough to speed down to the rescue which has been a wonderful blessing.

While I would like to say everything is fine, it truly is not. Will is somewhat stable but no one knows what is going on with him and what is causing these problems. He is hangin' in there like a trooper but it is rough. I do have to say it has given a lot more perspective, understanding and empathy for parents that have to go through this and worse. As a child I always wondered why my aunt had such a difficult time, twenty years after the fact, of moving past her child’s early passing. I still don't assume to know what she went through and such a statement would be an insult to her, but I can at least truly begin to fathom what that experience may have been like. It brings chills.

While this post is a bit of a downer the upside is that because of Jamie's excellent maternal instinct and insistence something was wrong Will is still with us. Because of the superior medical training & abilities of the staff at PCMC he will continue to stay with us. The future looks good; there shouldn't be any long-term repercussions but the present, that is where the challenge lies.