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.

Did I sign up for this??!!!

So after reviewing how I spent my day yesterday I have to sit back and laugh. I spent every minute taking care of my little guy and went to bed exhausted. Here is how my day went: Every hour and a half or so was spent feeding Will, apparently he is STARVING all the time and some days its tough to keep up! If I wasn't feeding William I was changing his diaper and most likely getting peed on. Who knew we could go through a jumbo pack of diapers in just a few days. Feel free to drop off diapers any time people, chances are we need them! It is always a battle to keep his oxygen on and I tried everything in the book to keep it tapped on yesterday. No such luck though because it was off every time I turned around! In between keeping his tummy full, his bum clean, and breathing I was changing Will's outfit constantly for one reason or another. He wore everything he has in one day! It was so crazy! So this is how he ended up, stripped down to a diaper and enjoying every naked minute! As I lay in bed pondering the days events I couldn't help but smile. If you know me and know me well you should know what a dedicated and hard working person I am and I can say I have had some pretty insane hard days. But nothing compares to yesterday! However, I drifted to sleep feeling the most content and fulfilled I ever have for such a hard days work. I LOVE being a Mom and I am so glad I can experience all that it encompasses. It is so amazing!

Open For Business

We appreciate everyone's patience in waiting to come see Will; we believe it has been very beneficial for both him and us. Well we wanted to invite family and friends to feel free to stop by if you would like to visit. Because he is still on oxygen and enjoying as stress free lifestyle we would ask that you come in small groups, especially if you have children. He is quite the toughie but still needs some extra protection. Feel free to call, text, or email when you would like to come and we will make sure both Will and us are available.

Upon hearing the news that he would have visitors Will responded with a strange grunt and an expression that I can only interpret as sheer joy.

Buttons & Kittens Move Aside...

Jamie braved allowing me to handle Will all on my own while she went to the gym today, and what was the result? Well I decided to update the blog and let Bella watch him! Honestly though I did start to update the blog as he napped away. As I was looking through the hoards of pictures we have taken in the last month I have come to a conclusion. Now I may be biased here but I think I may be on to something; My Son's Cute. So cute indeed that I begin to look at other peoples babies and think "You are so much better than me, I would be sad to know my baby isn't as cute as William". Yes I know; shallow, pathetic, down right mean, all of these would be appropriate terms; but at least I no longer have my long held belief that ALL BABIES ARE UGLY. So to any of you who have babies presently and we have visited you in the last 30 days, I'm sorry, now you know how I feel.

Will enjoyed a nice bath provided by mom and dad; Grandma Bev provided logistics. It was quite funny. While the pictures show some angry moments he generally enjoyed it and was quiet! Yes it was quite strange given what we have heard about babies in the past and their hatred for baths. No William was rather even tempered, as he always is! Enjoy the slideshow below and please forgive my shallow nature...