Brain Surgery- Second Time's the Charm?

I knew it.  I knew my mommy instincts weren't wrong.  I didn't want to be right, but I was.  Yes, after our couple of visits to the hospital last week, things started to improve.  Jayson was making great progress.  His wound was slowly healing with minimal leaking and bulging.  We were feeling encouraged, like we finally turned a corner.  Unfortunately, we hit a road bump that set us back more than somewhat.

Jayson's incision all scabbed up on Sunday, January 20.  It was looking pretty good!

I had difficulty sleeping again last night.  I started getting a migraine and took my meds and went to bed.  I could't fall asleep, then finally put a cold cloth on my head and calmed my anxiety enough to go under a light sleep.  At 4 AM, I woke up rather suddenly with a bad feeling.  I noticed Jayson was stirring a little, so I got him some Motrin.  I noticed he was almost out of food, so I reflilled his feeding bag.  I still didn't feel right.  I saw he had slumped down on his wedge while sleeping, so I felt the blanket he had slept on.  Wet.  Sopping wet.  I smelled it (weird I know, but it's important in the medical field) and it smelled like grossness and a little sweat.  I gently put my hand under his head and started to lift him back up onto his wedge from his slumped down position.  Wet, gooey, nastiness all over my fingers.  I didn't even know what to think.  I ran to the light switch and turned on the light.  I couldn't see what was on my hand.  I turned Jayson on his side.  Oh. no.  White, groos puss was oozing out of his wound.  How did this happen?  Things seemed to be finally healing!!!  How can this be??  I was supposed to be returning to work today and participating in an importnat teacher training.  Are we really heading back to Primary's again???

Jayson's oozing head at 4:00AM

I felt so anxious, deflated and discouraged.  I knew it.  I knew there was something wrong, but I almost let the doctors convince me otherwise.  Maya, our sweet pup, also knew there was something wrong.  I had a feeling something was coming because out of nowhere, Mays would not leave Jayson's side all weekend.  She was shaking anxiously for hours at a time, like she was uneasy, scared or afraid.  We couldn't figure out what was wrong and why she all of a suddent wanted to lay by (or somethimes on) Jayson.  Well, now we know.  She knew something wasn't right.

Shelby, our nanny, came over at 7:15 am as we planned.  I was supposed to be heading back to work. Instead, she helped me get Jayson ready to go.  This is more than a two person job, especially when we are in a hurry.  We got his diaper bag re-packed with his supplies.  We got his travel oxygen tank ready to go.  We got extra formula.  I prepared his meds so they could soak in the car and be ready to give once we arrive at the hospital.  I grabbed a couple of his toys and my ipad with all of his medical information.  And off we went.  For the first time in a long long time, I didn't pack an overnight bag for me.  The last couple of times I did, we were just sent home to "wait".  I assumed this would be no different.  I also took Shelby with me to the hospital, thinking we would be given an antibiotic and be sent on our way.  I thought I might be able to show up for the afternoon session of the training and help my teachers.  Boy, was I ever wrong.

We arrived at the hospital and in my head I thought it was Monday.  Not an uncommon mistake these days.  I rarely know the date or day of the week anymore.  I assumed since I thought it was Monday doctors would be around to see us readily.  Not quite the case on a Tuesday.  We lucked out and didn't have to wait too long.  We lucked out even more and actually saw the neurosgurgeon this time, instead of his plethora of residents.  I was not prepared for his frank and emotionless response to Jayson's head wound:  "It's a stitch abscess.  He's got to go back in the OR.  We should take him now.  He is allergic to the internal sutures and could be causing an infection and the abscess.  When did he last eat?"  Crap.  Big mommy failure.  How did I not suspect a surgery???  I had him on his continuous formula feeds.  I gave him Motrin in the early AM.  Both of these things are no good for a baby going into surgery.  He said we would have to admit him and wait while for him to be off of feeds for six hours in order to operate.  I hated the doctor for being so blunt and heartless.  I loved the doctor for being so blunt and honest.  Without emotion or concern in his voice, I didn't get emotional.  I took the news very matter-of-factly.  Okay.  My son needs surgery.  In the OR.  To get him different sutures since he was allergic to the other ones.  No biggie.  It's all under control.

Jayson's incision at the time we got admitted.

How I didn't completely fall apart today, I have no clue.  I still don't think I've had time to let it sink all in.  I went with Jayse up to the neurotrauma unit to our new room 2032.  It felt like deja vu... like we were just here.  Wait.  We were.  We got our same nurse as before.  It almost feels comforting in a way.  I waited in the room for almost two hours before making the decision to leave.  I needed my hospital bag.  I needed more of the mepore tape that Jayson isn't allergic to for surgery.  I needed my anxiety meds before I flipped the crap out.   I had to go home and get our things that I should have packed to begin with.  Ideally, I should have taken Shelby with me to drop her off at home while I pick up our things.  But I couldn't do it.  I couldn't leave Jayson alone without anyone.  He was starting to show signs of being in pain, and I knew they would come in at some point and put in an iv.  I decided to have Shelby stay with him while I ran home and then send her home on the Trax train.  Our plans worked out.  She was there for the little man when they poked him for his iv, and then poked him again because they failed to get enough blood for tests the first time.  She held him while he cried, when I could not.  She loves him so much.

Jayson was so sad he was back in the hospital.

Mike left work early to come to the hospital before surgery.  We anxiously waited to hear when it would be "time".  I also grew more and more confused.  After I spoke with the doctor this morning, I spoke with one of his residents.  He relayed to me what woud be done during the procedure.  It was different than what the doctor had told me.  He went into much more detail, whereas our doctor is a man of few words, but it was not the same thing.  The resident explained that there was an infection we were treating.  The doctor said the main problem was the allergic reaction to the sutures.  I grew more confused as I tried to let all of the new info sink in, and anfer we got Jayson's blood test results. They were perfect.  No signs of infection.  So why were they going to open him up to treat the infection?  It didn't make sense.  I really needed to talk to the doctor one more time before we go in for surgery.

We were able to meet with the anesthesiologist and the doctor in a private room just outside the OR to ask our quesitons.  I asked the neurosurgeon to please explain to Mike what he told me this morning.  He just stared at me with big eyes as if he wanted to say, "Why don't YOU tell him what I told you?" but he just stared at me in silence.  I broke the awkward pause by continuing, "So, you said he has an abscess, right?"  "NO!" he responded curtly, then he laughed in a scoff-like manner.  I laughed awkwardly to try and hide my anxiety.  He went on to explain that a stitch abscess is different than a regular abscess.  Jayson clearly had a bad reaction to the "vicryl sutures".  His skin was red, inflamed, irrated and refused to heal.  He said that just inside his head are another set of sutures to close things up around the brain.  These were also vicryl.  He is having a reaction to those as well.  His body is fighting them and rejecting them.  His body is pushing them out of his skin.  He would open back up the insicion, pull out the vicryl sutures, put in nylon sutures, clean the internal area completely, and sew him back up with nylon sutures.  He said it was all very superficial.  The patch sewn onto the dura also has sutures, but they are made of a material that Jayson would not be allergic to.  So he would not need to open up everything as they did originally.  I felt so relieved to hear his explanation.  He said it would only take a little more than thirty minutes.  It was going to be okay.

Jayson right before surgery.
Mike and I kissed the little man and walked down that long, sterile hallway towards the parent waiting room.  I hated that place, but it felt good to be among familiar faces.  We're on a first name basis with half of the hospital staff, it seems.  The receptionists gave me hugs and encouraging words, and handed me Ritz crackers and Oreos so I could eat my feelings.  Mike played games on his ipad while I juggled between my ipad and phone trying to charge one while I use the other to post updates.  After about thirty short minutes, Dr. House as I like to call him, came into the parent waiting room and said, "It was just what I thought.  Piece of cake.  He's doing fine.  See you in the morning."  Then he smiled and walked out.  Part of me wanted to junkpunch him, and the other larger part wanted to hug him.  He makes everything sound so simple, black and white, easy.  He's so confident, and I love that.  He is pretty much insensitive and arrogant, and honestly that's okay.  He knows what he's doing and that's what is most important to me.  And something about his insensitivity comforts me.  Again, his lack of emotion resulted in my lack of emotion.  Great.  Jayson was okay.  Piece of Cake.  Moving right along.


I was so anxious to see him.  FInally I got the phone call to go back and see my boy. Mike had to wait in the waiting room, whereas only one parent can go back into recovery.  Jayson was sleeping soundly when I got there.  The nurse informed me he was not happy a few minutes earlier, so they gave him some strong pain killer.  Once he heard my voice, he started to open his red, swollen little eyes.  He wanted me to pick him up so he reached for me and lifted his head.  This resulted in him realizing quickly that he was in a lot of pain.  Which made him want his mommy more, so he reached and lifted up again.  I tried to calm him, but we had to get him more pain medication until he was settled enough to sleep again.  All looked well so we were able to meet up with daddy in the hall and head back upstairs to our room.  I was so relieved that we would be going back to our room instead of the PICU this time.

Jayson in recovery.
Since we've been back to our room, we have been focusing on pain management.  He has seemed to have a lot of pain, but it is because he wants to wiggle, move, sit up and be held.  The morphine is making him shake, which I hate.  We just started his feeds again and once he has some food in his system we can try some Lortab instead of morphine.  The resident from this morning returned to our room to ask us if our doctor explained everything.  I laughed and again responded that our doctor is a man of few words.  He went on to explain details that were similar to his description this morning, and again contradictory to what our doctor told us he planned to do.  I am having a hard time deciding if the doctor did something different and just didn't let us know about it when he said "piece of cake" or if the resident is a complete idiot.  I'm betting on the latter.  I cannot speak with our surgeon until the morning to find out for sure.  So right now, I can honestly say that I don't know what in the HECK they even did in that operating room, which is not very comforting.  I do know this-- Dr. House has this.  He was right; everything went well as it always does in his care; and it was a piece of cake.

Jayson's incision looks very different this time.  I'm already feeling more comfortable just by looking at it.  The plan is to focus on getting him back on his feeds and ensure he is tolerating them, manage his pain, and ensure the incision is looking good.  My personal goals are to pick him up, hold him, give him a bath, and stay on top of his pain.  I hope he is comfortable enough for me to hold him tomorrow so we can cuddle up and watch our favorite season of BMW, our favorite hospital past-time.  The neurosurgeon said we may be able to go home as early as tomorrow.  I'm not in any hurry.  I want to make sure JAYSON is ready to go home.  He will let me know.  He always does.  

On a side note, my sister came by tonight to visit Jayson and me.  She mentioned something that would cheer me up-- Ben Savage (Cory Mathews from Boy Meets World) is in Park City at the Sundance Film Festival.  She was right!!!  That would definitely cheer me up!  The sad news is that we are here at Primary's and he is there watching films in PC.  Oh how I wish we could go walk the streets of P.C. hoping to run into him and other celebrities, but we cannot.  Not this year.  We joked about learning how to twitter and send him tweets or twitters, or chirps or whatever they're called about visiting Jayson in the hospital.  Every single one of our 13 hospital admits, we have played episodes of Boy Meets World non-stop.  It's a childhood favorite, and brings me so much peace and joy.  I watched the series in high school, caught reruns in college.  Then Mike and I watched all of the episodes together when we began dating.  We watched them for date nights after we were married and too poor to go out.  We watched them right after Jayson was born and we were up all night with a newborn baby.  Now, they are our constant companion during every hospital stay.  My sis used her new twitter account to message Ben Savage... multiple times... poor Ben Savage.  We didn't quite know how to use Twitter yet.  Then I mentioned it to a couple of my friends in my mommy online group, thinking they'd laugh at me.  Instead, they joined in.  Many of them opened up twitter accounts to also message Ben Savage.  Now I'm starting to daydream.  What if he came?  What if THE boy from Boy Meets World came to see Jayson??  What a cool story I could tell him as I tell him about his bravery and determination, and how he inspired people all over the world INCLUDING celebrities.  That would be an amazing experience.  I don't know that it will happen.  In fact, I'm sure Ben Savage is a very busy man, but maybe one day Ben will read Jayson's story.  Maybe Jayson will be a part of his thoughts and prayers.  And maybe while we're watching his beloved childhood TGIF series during one of our many hospital stays, Ben will be thinking about our brave boy and how he inspires him to be a better person.  That in itself would be an amazing story to tell our amazing little hero.  xoxoxo

Walking the Line

Wednesday, January 16, 2013

Before I went to bed last night, I said a prayer for guidance.  It has been 24 hours since I had my strong mommy instinct feeling.  It had been 24 hours of worry, research, tears, stress, anticipation, and thorough examinations.  I just wanted answers.  I wanted to know what was wrong and what I was supposed to look for.  I was exhausted from guessing and from wondering if it was his head, his wound, his spinal fluid, his tummy, constipation, teething, an illness... ahhhh!!  I just needed some direction.  As I was getting into bed, I had a strong feeling to find a white blanket or towel to lay under Jayson.  I grabbed a white blanket and successfully placed it under him without waking him up.  He didn't have any leaking the night before, but this way I can easily see any fluid leakage.

I spent the night getting up every hour or two to give his medications, and he seemed to sleep much better than the night before.  He only whined and fussed a few times during the night.  At 7:30 AM, Jayson woke up for the day in tears.  As I consoled him I looked down at the white blanket and almost threw up.  There was a good amount of blood and clear fluid on his blanket.  I tried not to panic.  I remembered the doctor on the phone and in the office told me some seepage would be normal, especially since the stitches were recently taken out.  It would be weird since he didn't have any leaking the day prior, but still a possibility.  He told me to look for fresh liquid on the wound.  I looked at the back of Jayson's head, and my heart stopped.  Shit.  Fresh, clear liquid.  And I could see it coming out of his head.  I blotted it with the blanket, and saw the moisture returned.  This was it.  This was the answer to my prayer, a sign that the problem was with his head and we would need to go to the hospital to have it checked.  There was no question whether or not I should go at this point.  It was out of my hands.  I placed a call to the neurosurgeon on-call at the hospital.  I needed to know whether we should come to the clinic at PCMC or go straight to the ER.  I tried to get ready to go while I waited for a call back, but I found myself physically shaking and pacing back and forth.  I couldn't collect my thoughts.  Leaking CSF fluid means he'll have to be opened back up.  The dura patch would have to be repaired.  Another risky procedure, and another long recovery.  And things had been going so well.  I really didn't know how much more Jayson could take; or how much more I could take. 

I knew I needed some help.  I couldn't emotionally do this on my own.  Mike was at work, and needed to preserve his sick time since he had used so much for the surgery.  If Jayse ended up going into surgery again, of course he would be there, but until I knew for sure I didn't want him to leave work.  I called our nanny Shelby to come over.  She could help me get Jayson ready to go and calm me down.  I also needed a Priesthood blessing.  I tried to think of who to call.  Most men were at work or about to leave for work.  I really wanted my second family, the Faulkners, to come over, but they were probably working and they had a lot on their plate as well.  I gave them a call anyway, and fortunately they were able to come over and give Jayson and me a blessing.  The neurosurgeon on-call called me back during Jayson's blessing, so I didn't hear it all.  But I know Jayson did.  He went from upset, anxious and in pain to giggling.  My blessing really helped me as well.  I stopped shaking, my head was clear, and I was able to be productive and get things done so we could go.  I packed an additional hospital bag, since the overnight bag wouldn't be enough.  Shelby and I got Jayson packed and loaded up, and we headed on our way.

Once I arrived to the Emergency Department, I knew I was going to have to play hard ball.  I would NOT let this be an opportunity for Jayson to get sick on top of everything else.  I checked in, let the nurses peek at Jayson, but I refused to take him out of his car seat and stroller for vitals or to weigh him on the scale.  They were a little put out, but thankfully complied.  We got right into a room.  The nurse took Jayson's temperature.  38.2.  That's a fever.  Crap.  She wheeled a "clean" scale in the room and asked me to place Jayson on it... with no towel, paper, or protective covering.  I asked if she had some paper to cover it, as they typically do, and she asked why.  I said, "Well, as I said before, it appears Jayson has a spinal fluid leak."  She responded, "Oh, yes, I see!  Of course we don't want that leaking on the scale and making a mess."  Right... No, I was more thinking along the lines of my son can get an infection in his brain if there is a leak!!  How about we don't lay him on random hospital equipment that is passed from one room to the other!  Geez...

That wasn't the end of the stupidity, and I knew it wouldn't be.  The ER is a very frustrated place for parents of "complicated kiddos" and frequent flyers at PCMC.  Lots of stupid questions.  Lots of oversights.  Lots of attempts to use the tape my son is allergic to.  Lots of mispronouncing of my son's conditions.  And even some mistakes that are apparently in his file that is only found in the ER.  After being told, "Well leaks are common after a brain surgery" from one ignorant resident ER doctor, we saw the attending doctor who got the ball rolling.  He ordered some blood tests looking for infections and a virus panel to try and find answers as to why Jayson has a fever.  He paged the neurosurgery team who was operating on a patient at the time.  He informed us we would be waiting a while as they finished up surgery, and hopefully we would have our test results by then.  Instead of just a finger prick, the doctor recommended the iv team came and placed an iv in case it is needed for surgery.  I liked his thinking.  Jayson did well with the iv placement and closed his eyes for a little nap.  I tried to buy time.  We arrived at the ER at 9:30.  It was 1:00 and we were still waiting for neurosurgery.  It was difficult not to let the anxiety get the best of me, but I tried to stay busy and productive to prepare for my discussion with neurosurgery.  They are very busy doctors, and not so touchy-feely.  You have approximately 4-5 minutes, typically, to explain all of your concerns, show any pictures or videos, and answer your questions.  You have to be organized and prepared.  I found my daily pictures from Jayson's surgery on my phone and emailed them to myself so I could open them up on my iPad.  That way they would be bigger.  I combined the past four pictures in a collage so they could be easily compared.  I did more research online about CSF leaks, how they are tested and how they are identified.  I practiced saying some of the new vocabulary out loud so the words could fluidly leave my mouth.  I felt prepared and ready.

Jayson woke up from his nap fussy and upset.  I am sure he was tired of laying on the hospital bed and waiting, just as I was.  The ER resident came back in to inform us that all of Jayson's blood work looked good and normal, and that his virus panel came back negative.  I asked the doctor if the blood test would rule out meningitis.  He said, "No, we still don't know about meningitis."  Finally, the neurosurgeon resident walked in.  I was hoping for a doctor, and not a resident, but this resident had seen Jayson several times a day every day during surgery.  He was also the on-call neurosurgeon I talked to on the phone all four times.  I felt pretty certain he lives at the hospital.  Of course, this is the time that Jayson completely changes his mood from whiney and fussy to happy and giggly.  He's smiling, wiggling, giggling, and babbling during our whole conversation, which made it difficult to explain to the doctor that my son hasn't been feeling well.  Thanks Jayson.  Perfect timing to get in a good mood. 

It was business from the beginning, and I could tell the doctor was in a rush.  I showed him Jayson's head, and he asked for me to identify the bulge I was concerned about.  I showed him the white blanket with the leakage and he said, "Okay, this is different from what I pictured when I spoke with you.  And that's a good thing.  Has your doctor explained the whole process of the procedure we did on your son?"  He grabbed a stool and had a seat.  I felt so grateful he was going to make the time to really talk to me.  He explained again the surgery process, but in more detail explained the opening of the dura and how it is patched.  He explained how sometimes liquid can find its way through the patch if it is not sealed securely enough.  He said it slowly pools and collects until the entire incision becomes one big bulge full of fluid.  Not smaller bulges throughout the incision.  He said that by the time the fluid is that backed up, it is under a lot of pressure and will not slowly drain as I have seen on Jayson's incision, but it will drip out just like a faucet.  He said it would be a constant drip and we could easily collect the fluid.  This was all information I did not know or understand before.  I wondered if I had been worried all of this time for nothing, simply due to my own ignorance.  He must have read my thoughts, as he interrupted my thinking to say, "No, I don't want you to get the idea that this is okay.  Your son's wound and head is anything but okay.  I am very concerned about this.  And it looks angry, red and ugly.  There are bulges and swelling, and there is some seepage.  I'm not going to say that this isn't a CSF leak.  This very well could be the first stages of a CSF leak.  However, we have to ask ourselves, 'What are we going to do about it?'  Well, if it's a CSF leak we open him back up and repair the patch.  So, if we are questioning whether or not this is a CSF leak, should we go in now and open him back up?  I'm not so sure we should.  It may not be a leak.  We typically wait until there is that constant drip so that we know that is the problem.  I feel we are walking on a thin line right now.  We are just a hair away from going back in, and we are not out of the woods yet.  A fever can occur with a CSF leak, or it can occur with an infection.  Or it could be something completely unrelated."  I asked about tests for CSF leaks, including CT scans.  He said a CT scan would inform us about hydrocephaly, which is also a concern, but Jayson wasn't showing enough signs.  It would be a lot of wasted radiation.  He said to test the fluid we would need more leaking and fluid to collect.  I asked about the blood tests and if they ruled out meningitis.  He said the opposite of what the other resident told me.  Yes, they ruled out meningitis.  He said this one blood test was an absolute negative.  He explained sometimes there are false positives for infections, but the fact that Jayson's was a complete negative there is likely not an infection in his body, or the antibiotic is already treating it.  He said it's crazy because one would typically look at Jayson's wound and think infection because it's so red and inflamed.  He explained that an infection doesn't usually take over the entire incision.  It starts in one place and slowly spreads the redness and swelling.  It seemed pretty clear to him that Jayson had a reaction to the sutures or to just healing in general.  It's difficult because we don't have a specific syndrome diagnosed yet, and it could be a symptom or part of his syndrome.  He obviously struggles to heal, just as he did from his GJ tube surgery.

I showed the residents the pictures I organized, and he said this makes him feel even more comfortable about the decision to wait on surgery.  He pointed out the things that clearly look worse in each picture, but he also pointed out some less obvious signs that Jayson's incision is slowly healing.  He kept reiterating that he doesn't want me to get the impression he is happy with Jayson's head right now.  Everything is telling him to be concerned.  But we just needed to give it another day or two.  He said he would not be surprised to see us back in the next couple of days, but then we would know for sure.  He hoped, however, that it was a strange wound issue that would eventually resolve on its own.  He expressed that Jayson was a complex kid from the beginning.  He was difficult to operate on, difficult to stitch up, and now he's struggling to heal.  He said he has never seen a wound look this ugly, and he doubts our doctor has either.  He took a picture of the wound to show our doctor to confirm his thoughts.  He once again expressed I was doing the right things, and he felt terrible that he didn't have solid answers for me.  He told me watch Jayson like a hawk, and bring him in as soon as he starts to drip.  He also informed me that my doctor was in clinic the following day.  He was completely booked, but if Jayson wasn't looking any better or was looking worse, it would be an option for me to drop in on clinic.

I felt many emotions after this conversation:  frustration, relief, fear, anxiety, irritation.  No one knows why my son has a fever.  No one knows why my son's head looks completely awful, is bright red, swollen and has a couple of bulges.  No one knows when or if it will heal without more complications, or what exactly I should do about it.  I'm doing the right things, he says.  Well, I'm not sleeping, I'm worrying, I'm freaking out, I'm researching a lot of bad things, and I'm making myself sick over this.  But I guess I'm doing the right things.  I just have to keep on keepin on, and maybe we will be back.  Despite my frustration, I appreciated this doctor so much.  He was thorough.  He really explained things to me, and he didn't make me feel rushed.  He didn't make me feel like I was wrong for bringing him in, or crazy for worrying.  He made me feel like I wasn't alone in worrying about my son.  He gave me some options if things weren't better the following day.  He confirmed my concerns, and he was honest when telling me he doesn't exactly know what is going on.  There is a lot I admire and appreciate about this doctor.  It doesn't change my frustration and fear, however.

I started getting Jayson packed up and ready to go home, now that it was 2:00 and we had spent nearly 5 hours in the ER.  The discharge nurse came in, and she was just the cherry on top of the cake.  I am tired.  I am grumpy.  I am frustrated.  I am hungry.  Please, do not send a clueless nurse in who knows nothing about Jayson or what we are even in the ER for to our room for discharge.  She says, "So, it's good you get to go home huh?"  No, not really.  "Did you get all of your questions answered?"  No, not exactly, but there's a lot of questions the doctors don't know the answers to.  "Well, it's nice to know what it's not."  Actually, we don't even know what it's not.  So no, nothing is very nice, good or pleasant about the situation right now.  She asked me if I wanted to leave the pulse oximeter on while she removed the iv.  I told her yes.  After she removed the iv, she proceeded to take off the pulse ox sensor and attempt to throw it away.  I stopped her to tell her the pulse oximeter was ours.  "Oh, that would explain why I haven't seen one like that before.  I thought it was strange that you weren't hooked up to the main monitor."  Yes, if you haven't seen it before, it's probably not yours.  Poor girl.  She caught me at a bad time.  Just when I was feeling bad about my sarcastic attitude towards her, she said in her perky voice, "Well, have a nice day!"  Okay.  Pet peeve of all time here.  There are certain places to wish someone a nice day.  The Emergency Room is not one of them.  There was nothing nice about my day and spending five hours of it in a hospital only to get no news which is equivalent to bad news.  Seriously, do not wish me a nice day.

Jayson and I went home and spent the rest of the day cuddling, ready stories, and watching Disney movies.  His mood was up and down.  It was hard to tell if he was in a lot of pain, or just irritated.  He got a burst of energy as we were putting him to bed and he started giggling for about 5 minutes straight at absolutely nothing.  I hoped this was a sign that good things were to come, and that maybe we were about to turn a corner...

Thursday, January 17, 2013

Wow.  It's crazy to think that we were discussing the possibility of opening back up Jayson's brain yesterday.  He slept through the night without a problem.  He woke up in the morning crying, but only because he wanted to get up.  I saw there was a little fluid on his blanket, so I carefully inspected his head.  Not a drop.  Nothing.  Bone dry.  It was a miracle.  The scabs were all solid, and there was no sign of a leak.  The redness almost seemed to look a little better, and the swelling was definitely down.  This was improvement!

Jayson spent most of the day happy, playful and energetic.  He hit a couple of big post-surgery milestones today.  We started working on physical therapy again today.  His nanny came over while I was working from home and she did several exercises with him.  He seemed to get tired quickly, but he was working hard.  Mike and I later put him on his knees in crawling position.  He held the position for 2-3 seconds before his arms gave out.  It was amazing!!!  Holding that position takes so much head control, trunk control, arm strength and leg strength.  We haven't seen that from him before. 

We also took another huge step, and gave him some food tonight.  I was scared to do this.  I was scared it might be too soon and Jayson wouldn't enjoy it or be successful, but I was more scared for personal reasons.  I didn't want to be discouraged or disappointed.  One of the biggest things I am hoping to get out of this surgery is Jayson's ability to swallow.  I want him to be able to eat and swallow without aspirating, and eventually be able to get rid of his feeding tube.  I was so scared that our first feeding experience post-surgery would be unsuccessful, and that I would get discouraged and think the surgery didn't help.  I know for a fact that surgery is draining and that it's going to take some time to build up his strength, and that includes his ability to eat.  But somehow, I knew it would crush me if he aspirated during his first feeding.  Well, we experienced another feeding miracle.  Jayson ALWAYS regresses in his feeding after a major illness or surgery.  He fights feeding, doesn't open his mouth, doesn't swallow, cries, aspirates, spits out his food, screams, etc.  Well today, Jayson was a rockstar.  He anticipated the food and opened his mouth.  He closed his mouth and swallowed.  He made num sounds of excitement.  He had lots of smiles.  His little whines and cries didn't last, and were due to his tiredness.  He turned his mood around and kept eating.  He didn't pause, spit his food out, or shut down.  He kept on going, until 1/2 of his baby food jar was gone.  He did not gag or aspirate a single bite.  It was remarkable.  It was honestly a miracle.  I feel so excited and encouraged to see what he will be able to do tomorrow!

 Jayson with his new bib.

 Getting excited to eat!

 Pulling on Mommy's shirt!  He's excited and ready to get this show on the road!

 First bite of food in a while.  He's not so sure how he feels about it.

He decides this is delicious!

I'm feeling more optimistic.  I think we are turning a corner in the recovery of this surgery.  I think that Jayson is going to make some good progress as a result of this operation, and that he is going to make great strides.  I'm starting to feel hopeful that we might one day be able to cry tears of happiness during a swallow study and say goodbye to a feeding tube.  I'm starting to think that Jayson may crawl this year, and may walk in the future.  I think with the combination of the good results from this surgery and Jayson's determination, the stars are the limit!  I feel so blessed to be a part of this little rockstar's journey!

Jayson with his new rockin' Build A Bear sent to him by his Aunt Grace and Uncle Abe. <3

Home Sweet Home

Thursday January 10, 2013

Jayson had a great night... well, until 4:00 AM.  The poor little man was woke up NINE times between 4:00 AM and 9:30 AM-- for vitals, resident neurosurgeon shined a light in his eyes, neurosurgery team came by to examine him, the neurosurgery nurse practitioner came to look at his incision, vitals again, the biohazard guy came to collect syringes, housekeeping came to clean, a pharmacist came to discuss medications, and the nurse came to discuss discharge.  Each time he was woke up, he realized he was in pain and he'd cry for a while until I'd get him settled and falling asleep, just in time for the next visitor.  He also threw up, likely from the pain.  His vomiting was a little set back.  We needed to make sure he was going to be stable before going home.

By 2:00 in the afternoon, we were looking good.  Jayse got a good nap in, hadn't vomited since the morning, and was tolerating his pain better.  Miraculously, I got him into the car seat without him crying.  I was so careful to not hurt his head.  We went home just in time before the big winter storm.  It began snowing on our way home.

It felt so good to walk into our house, and it was much earlier than I had anticipated.  Of course, Maya was happy to see us and she frantically licked the baby's toes to welcome him home.  In her excitement, Maya ran in front of me when I had my arms full and I tripped over her, fell and hit my head on the wall without even catching myself.  I spent the next couple of hours on the couch, possibly with a mild concussion.  I was dizzy and wasn't able to talk without stuttering for hours.  Thank goodness I have a sweet husband who took care of me and our little man.  We spend the evening watching movies and cuddling on the couch, just like I dreamed.  Jayson was happy and comfortable, and I felt so blessed.

Saturday, January 12, 2013

Things are still going well.  Jayson seems happy, comfortable and playful and we are weaning him off of his lortab.  It seems his pain is tolerated well on Motrin and Tylenol.  I started to get concerned today when his incision was getting more and more red.  He's not running a fever and he's acting normal, so I'm trying not to get too worried.  I called the neurosurgeon on-call at the hospital, whereas I was told to watch out for too much redness and swelling.  He told me that Jayson may be having a reaction with his stitches, and that we should come to the neurosurgery clinic to have the stitches removed on Tuesday instead of going to our regular pediatrician.  That way, they could look at him.  I felt a little better after talking with the doctor.  He told me to watch for a fever and leaking CSF fluid.

Today Jayson was able to sit up on my lap and hold his head up without too much discomfort!!  This was a great sign of progress!  He was even able to give me a hug and cuddles.

Sunday, January 13, 2013

I woke up today more than a little concerned.  Jayson slept well, for the most part, but his incision looked much worse.  The redness had spread and he was swollen.  Even worse, there was fluid on his pillow case he sleeps on propped up on his wedge.  It was blotchy with blood and clear dried liquid.  I didn't see any liquid on his incision, but it looked like it could be dried.  I remember the doctors telling me this was the most concerning thing to look for-- CSF spinal fluid.  A spinal fluid leak typically requires emergency surgery, so naturally I was freaking out.  Mike and I debated all day about whether or not we should take Jayson to the hospital.  He still didn't have a fever, and he was acting happy and active.  And if we go to the hospital on a Sunday, we will have to go to the E.R. which is full of very sick kids with many bad illnesses.  I got sick at the thought of exposing Jayson to all of those illnesses, just after brain surgery.  We went back and forth.  Let's go.  Let's wait.  Let's go.  Let's wait.  I called the on call neurosurgeon again, who took 2 1/2 hours to call me back.  He said that Jayson definitely needs to be seen.  The safest thing would be to come in right away, but we'd have to go through the E.R. and they were slammed with lots of sick kids.  He said that the doctors in the E.R. would look at him first and may or may not even call him to look at Jayson.  The best bet was to come in first thing Monday  morning to the clinic where we would definitely be seen.  That's what Mike and I decided to do.  We prayed that Jayson's condition was not serious enough that it wouldn't wait for the next morning.

Monday, January 14, 2013

Our night was long and difficult.  Jayson was up a few times, I was up many times giving medicine, and Mike was up all night coughing and really sick.  He honestly didn't sleep at all.  Then Jayson has us both up at 5:15 AM with the blowout of the century.  It was so bad, I gave it a name-- Pooplosion 2013.  It took both of us until 6:00 to get the situation under control.

Jayson had more fluid on the white blanket I laid under his head to sleep on.  His head was even more red and swollen.  I was glad we were heading to the doctor.  Shelby, his nanny, came over to help me get him to the doctor.  When we arrived, we realized we had a problem... Jayson's stroller was in Mike's car.  So Shelby and I had to haul the baby in his car seat covered in quilts, his oxygen, his pulse oximeter, his feeding backpack, his diaper bag, our purses and his extra blanket to the clinic in PCMC without the assistance of the stroller.  Yes, it was definitely a challenge.  Thankfully I had Shelby's help.  There's no way I could have done it otherwise.

We got right in to see the doctor.  Unfortunately, it was our doctor's day in surgery so we could only see the resident.  He was concerned right away due to the redness and swelling.  He wasn't suspecting a fluid leak, but he was thinking Jayson had an infection.  He took a picture of Jayson's head, then went straight to the O.R. to talk with our doctor.  Our doctor didn't think it was an infection since Jayson was acting fine and wasn't running a fever.  He felt he was having a reaction to the stitches, and that they should be removed.  However, he wanted to put Jayson on an antibiotic just in case.  That sounded good to me.

I got sick at the idea of the resident pulling out Jayson's stitches without any pain medication or numbing creme.  I had stitches out of my knee recently, and it was awful!  Poor poor baby.  I set up his favorite show, Yo Gabba Gabba, on my eye pad and gently held him down.  He did so well on the top half.  He only flinched a couple of times and held really still.  The bottom half was bad.  He was so swollen that the stitches were completely covered by his skin.  The doctor had to dig in his skin with the scissors to cut them out.  Jayson, naturally, did not like this and was screaming, crying and trying to roll away.  This just resulted in more scissor jabs to the head.  I couldn't believe how casually the doctor was cutting and jabbing, and I saw more blood dripping from the bottom of his incision do to the cuts and jabs.  I just held my baby as still as I could and whispered I loved him in his ear as I said a prayer that it would all be over soon.  He is so strong.  I don't know that I could have tolerated such a traumatic experience as well as he did.  As soon as the doctor was done, he wiped up the blood and put some orange liquid (iodine?) on the incision and then I was able to scoop up my little guy and kiss him all over.  He calmed down quickly and soon acted like nothing even happened.  That is my son!

We were happy to be going home and avoiding another stay in the hospital.  I was relieved to be carrying the bag I packed inside, knowing it would wait until our next visit.  I spent the day reading Jayson his favorite stories, watching his favorite movie, and playing with his favorite toys.  He was feeling warm later in the evening and was actually running a low-grade fever, which is shocking because he is on Tylenol and Motrin.  It makes me wonder if he has been running a fever after all, but it was masked by the meds.   I am grateful the doctors put him on antibiotics.  I think they will help, and I think the worst of it is over.

Tuesday, January 15, 2013

Worst. night. ever.  It started around midnight when I got a terrible feeling.  The feeling I get before we land ourselves in the hospital.  I tried to blow it off because everything seemed fine.  I spent the next 10 hours trying to console my baby in pain.  He struggled to sleep.  He would wake up crying and screaming and rubbing his head.  He would whimper in his sleep until he woke himself.  He would cry out, "Mommmm" and "Owwww" in the middle of the night.  He and I hardly slept.  It broke my heart, and I couldn't figure it out.  I assumed the incision was sore, and I ended up giving him more lortab, even though he hadn't had any in days.  In the morning, I inspected his incision.  It actually looked slightly better.  Less swollen.  He didn't have hardly any fluid on his pillow case.  He didn't seem to mind me touching and pushing on his incision, so I don't think that was it.  Jayse and I got some sleep between 10:00AM and 1:00 PM before he once again woke up hysterical.  I spent the entire afternoon and evening trying to keep Jayson happy and comfortable.  Just when he would start smiling and playing, his smile quickly turned into a pout and he would cry.  He just couldn't stay happy or comfortable.  It didn't matter if he was laying, sitting, next to me, on my lap, he was not happy.  I was going crazy trying to figure out the problem.  He was still rubbing his head, eyes and ears, which he does when he has a headache.  Yet, somehow I wondered if his antibiotic was causing a tummy ache, or if he was getting a sore throat and catching Mike's cold.  He was definitely teething, but he has never cried over teeth before, and especially not while taking Tylenol, Motrin and/or Lortab.  My mommy feeling got stronger and stronger.  I have fought the urge to throw up all night from the massive amount of anxiety I have been feeling.  Something is not right.  I'm scared it's his brain.  I'm almost hoping he's catching an illness.  Either way, it's bad news.  It is never good when the happiest baby in the world spends the day whining in agony.  I think we could use some prayers.  I may be taking him back to the hospital tomorrow, and hope somebody will listen to me when I say something is not right.

Crossing our Fingers

We had another great day today!  Here are the highlights of another long day at Primary Children's:

• Jayson did not seem to have much pain today.
• His swelling went down a lot first thing in the morning, but he slowly puffed back up.  He still had less swelling today than yesterday.
• Jayson slept the entire day.  He was only awake maybe 2 hours all day long.  He slept through the night, and then basically slept until 3 PM.  It was difficult to wake him, so I was concerned.  Of course, as soon as the neurosurgeon's nurse practicioner was called and came by, he woke right up and was fine.  When she left, he went back to sleep.  
• Jayson's pupils have been very constricted.  We spoke with the resident later who felt we were giving him too much narcotics.  He got his last dose of Lortab at 2 PM and has been on just Motrin and Tylenol since then.  So far so good!
• He threw up a little tonight due to the nausea, and seemed to have some reflux.
• Jayson had a severe bradycardic episode. I'm assuming his reflux and vomit hit the vagal nerve and that caused the drop in heart rate down below 50.  He bounced back up, although it was still lower than normal for a while.  No one seems to be too concerned.
• Jayson was sleepy and not very responsive all day.  He finally gave me his first smile of the day at 10:30 PM when he woke up to play.  It seems maybe the Lortab is wearing off.
• I held Jayson for the first time post surgery!!!  It wasn't as bad as I thought.  He was in a little pain, but he was more concerned about jumping in my arms that getting comfortable.  He really needed mommy cuddles.
• Mike went to work today to conserve his sick time hours.  I had a couple of visitors which really made my day.
• I have gone through two seasons of Boy Meets World DVDs.  This is my hospital show. :)  It is always packed and ready to go in my hospital bag and tends to keep my spirits up all day long. Don't worry... I skipped over the disc when Cory and Topanga break up.  It's too heartbreaking.
• Jayson hadn't had a bowel movement since before surgery, and the Miralax twice a day just wasn't doing the trick.  Finally we gave him a suppository and now our boy is good and cleaned out again (and our hospital room reeks as a result!)
• Jayson got his first sponge bath post surgery and seemed to enjoy feeling clean and dressed in his own clothes!
• Jayson's stoma from his GJ surgery looks better than it ever has!  I'm certain he had an infection, and that since he was treated with antibiotics during surgery it also cleared up his infection.  It looks great and that makes me a happy mommy!
• If all continues to go well... we are going home tomorrow (Thursday)!!!

We are crossing our fingers that Motrin and Tylenol will be enough to control his pain, and that we'll feel comfortable taking him home tomorrow.  This has been such a positive experience this time in the hospital, but we are ready to go home and cuddle on our cozy little couch with our Maya puppy!!!

Post Op Euphoria

I didn't get much sleep.  I really didn't expect to.  Although things were so calm in our ICU room all day, I thought maybe I might be able to catch a few zzz's.  We had been in the PICU all day yesterday and we didn't see a single team of doctors.  Guess they decided 4:00 and 6:00 AM were great times to pop in to talk with me and the nurse.  And then all parents have to leave the PICU from 7:00-8:00 AM and PM for the shift change.  Normally I'm sick to my stomach when we have to leave the PICU, even just for an hour.  Not this time.  I knew Jayson would be just fine.

Jayson had a pretty good night.  He slept through most of the night, with some occassional whining and fussing when meds were due.  He had his last dose of morphine and zofran an midnight.  It has just been lortab and motrin since that time to control the pain.  The teams of doctors cleared Jayson to leave the PICU and go to the floor.  His arterial line was taken out.  This was the first time he's had one of those.  It's like an iv but used to get a constant blood pressure reading.  It was placed in the artery in his wrist/arm.  He had two other ivs in his feet that we were leaving in for medication purposes.  We packed up and moved down the hall to the neurotrauma unit.  We have not ever been in this area of the hospital before.  Our room was private with a bigger fold-out bed in a decent sized room.  It was comfortable.  They offer snacks and drinks on this floor to parents, and there are children of all ages.  This floor is a little sad too.  Many kids I've seen are disabled.  Kids in this unit have brain issues and other serious traumas.  

Jayson woke up just before we moved to the neurotrauma unit.  He was trying so hard to open his eyes, but they were so swollen he couldn't.  He tried to peek out the bottom of his eyelids to see his mommy and smile.  I got his first smile in the PICU this morning!!!  He stayed awake as we got settled in our new room.  He wanted to play!!!  He was kicking, giggling, smiling and playing.  I could not believe it!  I thought today he was going to be in a lot of pain.  I thought it would be days before I saw his cute smile again.  This was so much more than I expected.  He got tired quickly, but after a short nap he was ready to play again!  It was such a wonderful afternoon.  They took his ivs out and we focused on getting him off medications that would keep him here in the hospital.  He didn't show any obvious signs of pain at all today.  Not at all.  He kept rubbing his eyes, which is often a sign of pain, but he wasn's whining or complaining.  I think his eyes were bugging him because he couldn't open them.  By this evening, he was able to open his eyes and was having a great time keeping himself entertained and babbling to his mommy.  

He has wanted to be held so badly.  Can I tell you how difficult it is to have your tiny baby have brain surgery, and all you want to do is cuddle them, kiss them all over, and tell them it will be okay, but you can't!  It would hurt him too badly at this point to hold him.  He can't hold his head up right now, so I would have to support it right where his incision is.  I also am constantly wearing a mask around him.  Mike is getting a cold and there is so much illness in the hospital.  I'm wearing a mask to protect me from illness that would then pass to Jayson and I'm also wearing it in case I'm carrying an illness.  I can't imagine anything worse than catching a bad illness while trying to recover from brain surgery.  He just can't!  So I kiss him through my mask, and hug his little body in the hospital crib.  He keeps reaching for me, pulling on my shirt and hair and grunting like he's trying to pull himself up into my arms.  It breaks my heart.  Maybe I will try to hold him tomorrow.

I feel like I'm living a dream.  I've been so used to crisis, emergencies, complications, concerns and problems that I can't believe things are going so smoothly right now.  It doesn't seem real.  My heart is so happy, like so incredibly happy.  I was just laying down for a nap today when I started analyzing my feelings.  I recognized this euphoric feeling of happiness.  I have felt this feeling before, even more strongly.  I recalled when I was this happy, and the simile hit me hard.  I felt complete eupohoria when Jayson was first born.  That was the happiest moment of my entire life.  In an instant I felt love stronger for someone than I had ever felt.  I felt excitement for what our future family had in store, the things we would do, and the memories we could make.  I visualized the milestones my baby would make and how I would cheer him on.  I remember feeling complete, after nine months of anxiety and anticipation, the moment I had waited for was finally here.  All of these were great thoughts and feelings on that beautiful December afternoon when Jayson was born.  I felt many of these feelings and emotions again today.  I had simliar thoughts this afternoon.  This is one of the happiest moments of my life.  My little hero made it through a tough, risky surgery and it is going to help him greatly.  I would have lost my son had he not had this surgery, and now I feel he will be okay.  Throughout this surgery, I have felt such strong love for my baby.  Pure love.  Motherly love.  Eternal love.  A stronger love than I have ever felt.  I feel excitement for what our family has in store.  There will be many more things we can do, and many memories to be made.  I am thinking about the potential milestones Jayson might be able to meet now that he's had this surgery.  I don't expect them, but I am hopeful.  Before, I was hesitant to even hope.  Now I'm excited to see what he will do tomorrow, next week, next month.  He is going to do amazing things.  I was robbed of the experiences of watching your baby meet key milestones, and now I have hope that I will be a part of some of those!  I have a feeling of being complete.  After nearly a year of axiety, anticipation that things might be better, fear, and the constant feeling that I was missing something, I feel complete and at peace.  We found the big issue for Jayson.  We have fixed it.  All of the waiting, hoping and praying has led us to this moment.  This complete feeling of euphoria.  Giving birth is also a very sacred and spiritual experience.  I have had similar feelings over the past couple of days.  We have had so many prayers said on our behalf.  So many friends, family members and strangers joined together for a sacred fast.  We have felt the spirit so strongly the last couple of days, just as I did when my precious boy was born.  

Yesterday was the start of a new beginning, a rebirth for Jayson and our family.  We are hoping that this next year with Jayson provides us with many experiences we have missed over the past year.  We feel so blessed and fortunate to be able to take our baby home this week, cuddle him, care for him, and revel in the euphoric feeling of rebirth as we enjoy this precious time with our family.  This experience has healed Jayson's head and healed my heart.  I've been tough, but it was beginning to break.  A mom can only take so much and watch her son suffer through so many things before her heart shatters.  Right now, my heart is complete.  It's full.  It's bursting.  It's exploding with joy and gratitude.  I recognize how blessed we are.  I know how special it is that we have been given more time with Jayson, and another chance at life.  I am so grateful for the feeling of hope that I feel right now.  I know not all parents get that.  For that reason, I will not take it for granted.  And I will spend every day thanking my Heavenly Father for giving us more time to be a family, which is nothing short of a miracle.   Just as miraculous as the day He gave Jayson to us on this earth.    Happy rebirthday little Jayson.  January 7th will always be a day to celebrate.  

We are Blessed!

Everything about today was different.  I slept last night.  I didn't have any panic attacks.  I got ready this morning without nausea and tears.  I didn't throw up on the car ride to the hospital, nor did I when I walked in the hospital doors.  There was a smile on my face, and a calm feeling in my heart.  I felt peace.  Do you know how long it has been since I felt a pure feeling of peace?  Especially in a hospital... on my son's surgery day... with a high risk procedure.  It was a miracle.  The only tears I cried all day were tears of joy.  I did not spend my morning on the hospital floor trying to throw up my heartache and fear.  Today was different.

We are so blessed.  Our family was blessed today by so many prayers and thoughts we have received by so many.  We are blessed by the special fast held for our family on Sunday.  We knew a fast of this magnitude could bring about miracles, and it did.  We are blessed by so much love and support from friends, family, and even strangers.  We are blessed by messages of love and pictures of purple pledging support for Jayson and his fight against Chiari.  We are blessed by the special priesthood blessings that were given to our family last night with promises of strength, peace, knowledge and love.  We are blessed by the gift of knowledgable and confident doctors who work in the presence of angels.  We are blessed with a son who is such a determined little fighter.  Today was special because we were surrounded and lifted up by an abundance of blessings.  

We dressed ourselves in our purple attire, took a family photo and arrived at the hospital in safety.  The road conditions were dangerous and we passed many seirous accidents on our way.  As we checked in, things went smoothly.  They had the right procedures and doctors listed on the paperwork.  The information I gave in the registration process was stored and retrieved.  I was prepared with a special "care package" for our doctor and anethesiologist this time which included a plethora of Mepore tape and a 3x5 card with special considerations regarding our son.  I tried my best to ensure there was no chance for failure.  No chance of using the wrong tape he's allergic to.  No chance of using any medication that might react badly to his apnea.  No chance of endangering him due to his C1 instability.  Today would go well.  I was determined to ensure it would all go well.  The doctor came in to see us and he reassured me everything would go smoothly.  He said Jayson is young and small;  he is younger and smaller than most children who have this surgery.  However, that can sometimes make the process easier.  He said that surgery should be simple and he does not expect any complications.  He also mentioned that he only thought it would take 1-2 hours.  I had previously been informed to expect up to 6 hours.  I felt so reassured and relieved.  I felt confident that all would go well and today would be a good day.

We met our nurse team and they seemed to be sweet, concerned and informed.  We met our anethesiologist who knew all about Jayson.  She was also confident, understanding and kind.  This time, my heart didn't ache as I handed Jayson over to the anesthesiologist at the entrance of the operating room.  I kissed my baby, held his hand, and let him go knowing this operation was going to change his life.  As I turned and walk away, I didn't feel like I couldn't breath or that my heart was ripped out.  Mike and I walked down the hallway, holding hands, with full hearts.  This was just what Jayson needed.  I felt at peace.

The nurse told us that we would hear an update from him about an hour into the surgery.  We spent our time perusing the internet our our iphones and ipads in the surgery waiting room, just waiting for that call.  I knew it would be good news.  An hour went by.  Then two.  I could slowly feel the calmness fading and slipping away.  I started shaking, and I was confident that if I didn't get an update soon, I would be spending the rest of the afternoon on the bathroom floor.  I started to tear up just as I heard the receptionist's phone ring.  I knew it was for Jayson.  "Carter's dad please!" she said.  I thought i had misheard.  I have a strong feeling that update was for us.  Just then, her phone rang again.  I'm pretty sure I stood up before she called Jayson's name.  I knew it was our update.  The nurse told me the words I hoped I would hear... Jayson was doing great.  His vitals were good, there were not any complications, however it was taking a little longer than planned.  They were just sewing up the patch for the dura and it would be another 45 minutes or so.  Music to my ears.  I seriously wanted to skip around the room.  Jayson was going to be okay.

The next 45 minutes went by much more quickly knowing Jayson was alright.  Our neurosurgeon came in the room and asked to meet with us in the conference room.  He explained that Jayson's surgery went just as planned and without complications or blood loss.  He was recovering and would soon be taken back to PICU.  He said his surgery was very difficult and challenging because things were very tight; much more tight than we imagined.  He said there was not any spinal fluid passing through at the time.  Once he opened things up he said it just poured through.  He expects that Jayson will feel much better after this surgery and it should really help him in many ways.  What a miracle.  I instantly felt confimation that we did the right thing and picked the right doctor.  I think we once again saved Jayson's life.

About 45 minutes later we were able to see our sweet boy in the PICU.  I prepared myself mentally for the worst.  In my mind, PICU is mommy hell.  It's full of very ill children, dying babies, and heartbroken parents.  It's a place of crying, screaming, and moaning.  It's a place of constant codes and never ending alarms.  It is literally hell.  I also prepared myself for the worst with Jayson.  He always looks awful after surgery.  Swollen face, closed off airway, loud stridor, dried tears all over his face.  But I was surprised.  Jayson's room was closed off from the noise, and felt almost like a sanctuary.  And he looked like a peaceful angel asleep in his bed.  No signs of residual blood.  Good skin color.  No signs of pain or anguish.  No swelling.  He looked peaceful.  It was a miracle.  He looked so good.  I knew this was yet another sign that we did the right thing.  We really helped our baby with this surgery.

Jayson slept all day long.  He only woke three or four times due to the pain.  He fussed, whined, rubbed his poor little head, and mommy yelled for more morphine.  I have a motto in circumstances like these... the more-phine the better.  We are trying our best to keep him comfortable, and it's working for the most part.  The nurses say this is a very painful procedure.  Tomorrow will likely be rough.  We have to start weaning the pain meds and forcing him to wake up and move.  I don't look forward to the pain tomorrow will bring Jayson's little body and mommy's little heart, but I feel confident that things will improve quickly.  This pain will be for such a little while, and the constant pain and pressure he must have been feeling before should be released.  And that's what gives me the strength to wake up tomorrow with a happy heart.  It will be a hard day, but it will be a good day.  Because we will be one day closer to a new Jayson.

We are staying in the PICU tonight and will likely be going to the neurotrauma unit tomorrow morning.  I must get some sleep because I doubt I will have a night this week to rest after tonight.  Thank you for all of your prayers, love, thoughts and support.  You will never be able to comprehend what it means to our family.  We are so blessed by your love and friendship.


 

My Hero

This little man is my hero.  He is my life, my love, my everything.  I've never been more scared and anxious in my life than I am right now as his high-risk surgery is a little more than a day away.  But I know he's going to be alright.  Because superheroes are always alright.  They keep on keepin on.  They are the ones fighting in this world, doing good, and saving others from their grief and pain.  And this is Jayson's story.  He improves others, touches hearts and changes lives.  We are all so lucky to know this special boy.

See more about his surgery and latest diagnosis in this blog post.  To know how you can help see this blog post.

A Special Fast for Jayson

Anticipation...

Oh. My. Gosh.  Jayson's surgery is five days away.  I'm already losing my mind.  I can't focus on anything.  In short, I'm a complete mess!!!  Today I am trying to get some details worked out in preparation for the surgery.  The doctor warned us that with opening up the dura of the brain, there are little pockets of blood he may hit and Jayson may need a blood transfusion.  In allllll of Jayson's medical paperwork (I have kept it all in a thick binder) not one page states his blood type.  A couple of his pages of medical paperwork state my blood type, but not his.  So I'm making calls, trying to find his blood type, and investigating the idea of donating blood to help with a potential transfusion.  Mike doesn't even know his blood type because he has never seen a doctor.  Shocking, I know.  And if my blood type ends up being compatible with Jayson, it will honestly be the biggest sacrifice in the world to donate my blood.  I pass out, every time, and I'm sick for hours afterwards.  But I would do it for my boy.
(for more details about Jayson's condition and surgery, read the blog post 'Bad News')

A Special Fast for Jayson...

My anxiety is through the roof right now, and my meds aren't even helping.  The only thing bringing me peace right now is my faith that God is watching over my son, and He has a plan for him.  I am not in control, and that's hard for me.  Another piece of comfort is knowing we have a fast coming up for my special little boy.  In my faith (The Church of Jesus Christ of Latter Day Saints), we fast once a month to show our dedication to our Heavenly Father, and to prepare ourselves for our fast and testimony meeting.  We also fast in very special situations when additional faith might bring more blessings.  I have seen fasting bring miracles in my own life.  And I fully believe there is great power in numbers, when many people fast and pray with the same purpose.  This brings me comfort knowing that this Sunday, January 6th, many people all over the world will be fasting, praying, and sending positive thoughts for baby Jayson.  All are invited to participate in this fast.

How does a fast work?  In my faith, we say a special prayer before a fast.  In this case, we would ask for Jayson's surgery and recovery to go well.  We then skip two meals as part of our fast, to show dedication, commitment and sacrifice.  After our fast, we say another prayer asking for the same blessing.  (more information can be found at: http://www.lds.org/topics/fasting-and-fast-offerings?lang=eng).

One does not have to be a member of our faith to fast.  Nor does one need to be considered "religious".  This is a practice that shows faith, hope and sacrifice for a particular purpose.  I know Jayson will be blessed by the fasting and prayers of many family, friends, acquaintances and friends we have yet to meet. 

Additionally, I have joined many Chiari support groups and websites.  The color PURPLE is used to show support to those who suffer from Chiari.  If possible, wear purple on Monday, January 7th to show your support to Jayson during his decompression surgery.  You can send me your pics on Facebook:  Tristin Taylor West.

 Thank you all for your support, thoughts and prayers on our behalf.

Please leave a comment with any questions.