On Deck to Go Home - Fri 8:30am

Well it looks like we are headed home today, probably sometime this afternoon. Yesterday when we met with Dr. Walker, (neurosurgeon) he reminded us that it is common for children to be released the day after shunt reinsertion. However, just the day before, Cole had several severe breath holding spells and he still seemed to be in pain whenever we repositioned him or moved or touched his head. So they let us stay another day.

Yesterday was a good day. No serious breath holding spells and the pain seemed to be much more reduced. We have been moving him much slower and having him help us with repositioning by using the weight and position of his arms and legs to facilitate the moves. This seems to be helping. Yesterday his right eye was even more swollen again, which they said was due to the position he was in during the shunt surgery. (It looked pretty nasty and we were secretly worried about an eye infection, which was another reason we wanted to wait another day before discharging from the hospital). Also, we learned yesterday that Cole will be wearing a helmet for at least a month to help maintain his head safety and to maintain all the beautiful work of the plastic surgeons. We go in Monday to have his head scanned for the helmet. Yesterday was also a day of visitors. Tami (Cole's Birth Mom) and her family came up to visit Cole. They love him so much and always bring him the best gifts and toys. We also had visits by Grandma Jackie and Grandpa Keith and also from Brian from Teri's work.

This morning we woke up to the Neurosurgery residents making their rounds. The swelling in Cole's right eye has gone down quite a bit and he has both his eyes open. Before we came into the hospital, our Vision Specialist brought a mylar balloon for Cole to play with and it was a big hit. So the last few days, including this morning, we have been putting the balloon string in Cole's hand and he swings that balloon around, watches it with intense interest and smacks it against the bed rails. He loves it. The balloons came with an adorable bear from Teri's team at work. He is so much more chatty and happy the last 2 days. He smiles when we talk to him and laughs at Patty Cake. His hair is growing very fast and we wouldn't be surprised if the surgeons have to search for the stitches in a week.

Once again, thank you so much to everyone for all of your support, good thoughts and prayers. We are so blessed. And we are so grateful to Heavenly Father for allowing us each wonderful moment with our precious boy. God bless all of you.

Update 1:35 - Out of Surgery

Ok, for those of you playing along at home and work, we're now down one more tube. Of course we've made up for the lack of tube with the addition of the 'betadine' like soap/prep they cover him with to maximize a sterlne environment to work on. It's going down his neck and sides because they had to reinstall the tube to his tummy (remember, the extra CSF (cerebral spinal fluid) drains down a tube behind his neck and into his abdomen (check out the visual aid on the right hand navigation bar for a reference). Perhaps when he gets a little older and we get some of these surgeries behind us, we'll start naming all of the little scars (3-4 on his tummy, 2-3 on his neck, 3 on his head - NOT counting the mother of all scars from his cranial reconstruction and not counting all of the little holes from IVs and IV attempts.

They successfully internalized the shunt and installed a new valve back in his head. We haven't spoken to his doctor yet (he had three shunts scheduled this morning) but his intensive care nurse indicated he did well. He was awake when we went back although somewhat groggy (understandably). They were careful not to use a drug that would sedate him too deeply to avoid any more breathing problems while under sedation. Our Anesthesologist reminded us, 'we don't die from pain we die from lack of oxygen'.We've brought him back to the room and began to get him comfortable. He did have some junk in his nose and throat we needed to clear out. He was really struggling with it including having difficulty even coughing it out and, as you might have guessed, creating breathing problems and causing his oxygen levels to drop. Shawn, being newly appointed aat home s the suction master, did the honors here. Once we got a substantial amount out, he was more relaxed and worn out. Teri put on the CD of primary songs he listens to at Grandma Jacquie's house and as you can see he's drifted off to sleep. His heart rate, oxygen levels, respiration all look good.

Once we get the 'official update' from the surgeon we'll create another post with the details.

Update 6:00 PM - Prepping for Surgery

We've had some generally good periods - hurray!!

He's definitely more alert and getting closer to his old self all of the time. He's moving a lot more, he's doing more self-soothing (clicking his tongue), wiggling on to his back (he's supposed to remain on his side and protect his 'new' head, and smiling - FINALLY!! Our sweet boy is finally smiling again.

Again, one of the many sweet nurses (Roni) who help love and tenderly care for Cole

He's still in some pain when you pick him up, or more precisely cradle his head. Besides being miserable he gets so upset that he will cry out without crying in -- more breath holding, including turning dusky and even bluish. We blow in his face, tilt his head, all of the things we can think of - including threatening to hold any allowance in the future. He'll take some time (generally too long for anyone watching). I spoke with the neurosurgeons so they could start addressing it now or during surgery. They ran a number of tests and a handful of labs. Meningitis was mentioned, but luckily ruled out after the labs. They found some additional blood in his head where it shouldn't be and believe the problem may be related to too little pressure (overdrainage ... the problem that caused the need for this surgery to begin with). They've turned up the pressure so he'll retain more fluid, protecting that beautiful head. It appears to already have had an improvement today. We'll continue to monitor it. Where he was on a mix of morphene and loratabs, we've been able to take him down to motrin and tylenol. Will see if it lasts during the night, typically the hardest time for him

We're slated for surgery on Wed morning to reinternalize his shunt. Good news they're going to use the same valve (programmable) and install it in the same place. That's helpful given there are already 'tracks' so hopefully minimize his head / skull / etc. dealing with this foreign object and finding it's place. We know what pressure he was on -- it's amazing to realize we have committed to memory the shunt type, manufacturer, setting, etc. -- all of which should help with the installation. Surgery should be relatively short and since already has a PICC line (as long as they remains functional, they'll probably be out of surgery in about 2+ hours. He'll spend some time in recovery and then secluded for a few hours and then probably back to his room to recover. That's the plan ... everyone say it with us so it all comes true. :-}

A big yawn from the big guy - it's wearing all of us out

We will keep everyone up to date on the progress as we see it. As always, thank you for your prayers and good wishes. They mean so much to us.

~Thanks again to Grandma who took some pictures for us since we were without our camera earlier this week. ~

Incredibly Poor Timing - 8:40am

Sunday for Cole continued with a mixed pattern similar to the last two days. We are seeing continued decreasing swelling in his eyes, face and body. He was even cracking his left eye open at us a few times. We are also seeing some of his mannerisms returning, like sucking his tongue and tapping his chin with his hand. However, Cole continues to recover much slower than expected. He is still sleeping almost constantly. Also, he continues to cry, apparently in pain, each time we move him and this leads to a behavior we haven't seen since his early months of life, breath holding. So he cries, and doesn't breath in, turns dusky and even a little blue. We blow in his face, turn on some oxygen and eventually he takes a breath, but it is still a little scary, especially for any of our nurses who haven't seen it before.

We also got the results back from Cole's MRI. The good news is that there does not appear to be any clear brain trauma that would explain his slow recovery. The bad news, they found several infarcts or mini-strokes in his frontal cortex. The Neurosurgeons are very perplexed by this and cannot find an explanation for the pattern of damage. Also, they have no idea as to the effect this would have, but it would not very well explain his slow recovery. Here again proves the rule; the more we know, the more we realize what we don't know. We were very lucky to have the opportunity Sunday to attend church services and partake of the sacrament at the hospital. The local LDS student branches provide services to Primary's and UofU hospitals. The services are very brief, but very powerful and touching. The leaders always refer to Primary's being sacred ground and we couldn't agree more. The providers there are doing God's work - providing loving care for his children. We are so blessed.

And now for the poor timing part. Sunday morning Shawn was feeling increasingly yucky with stomach pain and chills. Now mind you, he had eaten a sub sandwich that had sat out in our room for about 10 hours, but he has a rather iron stomach. In fact he once ate a bowl of chili only to have Teri start eating hers and she noticed an off taste. Sure enough it had fermented. Shawn said "I thought it had kinda a zing I hadn't tasted before." He never got sick, and it didn't effect him in the least, well except for making him weirder than he already was. Anyway, in the early afternoon Shawn jumped up and promptly threw up in the trash can. Teri averted her eyes, but couldn't avert her ears. Luckily, it did not lead to a barf-a-rama throughout the room and pod. Teri was planning on going home Sunday evening as she had to pick up the dogs from boarding and she had to go to work the next day, but now we both had to head home so that Shawn did not give what ever bug he had to Cole or any of the other children or employees there. This was very hard, to leave our sweet baby when he was still needing so much comfort.

We were comforted by the fact that we would be leaving him in the very loving and competent care of his nurses, but it was still very hard. One thing that was comforting at this time was his sweet loving Grandma Jackie came up in the afternoon. He slept most of the time she was there, but the last 20 minutes, he was stirring. She began to sing Rock-a-by baby to him and he broke out into a big smile - the first since we entered the hospital. She was able to capture a picture of it, and we hope to post it soon.

Teri got up very early this morning and went in to the hospital before work. Dr. Walker, Cole's neurosurgeon, wanted to meet with us and discuss a plan. Dr. Walker has been out of town throughout the latter part of last week and the weekend. He is in town today, but leaves for 2 more days tomorrow. Cole's CSF (cerebral-spinal fluid) looks very clear which is a good sign that they can re-internalize Cole's shunt soon and we can go home. If they re-internalized Cole's shunt while we still had blood coming out with his CSF, the blood could clot and block his shunt, and we'd be in for another surgery, so we are fine with waiting until the right time. Dr. Walker is very frustrated with Cole's slow recovery and you can tell it really bugs him to not have an explanation. The plan is to re-internalize his shunt either tomorrow or Thursday.

So Shawn is sitting home going crazy not to be with his son at all today and Teri is at work going crazy not to be with her son until this afternoon. Luckily Grandma Jackie is on her way up to be with her sweet baby for the morning and afternoon. We love you so much Mom. We are so lucky to have such wonderful family and friends who care for Cole so much. We'll let you know more when we know more. Love to all of you. Thank you for all your prayers and don't forget to thank Heavenly Father for every moment we get to spend with each other.

Update 7:00 - Is he a pincushion or a boy?

We had a fairly quiet day, procedurally speaking. Cole was only scheduled for a PICC line install. Unfortunately, they were not inclined to do the line bedside (which is A OK with me) due to the increased breath holding spells he's having. However, we had already stopped his food and pain medication in preparation for the PICC line since they would have to sedate him, so he was miserable.

Unfortunately because of the problems the IV team had the day earlier getting the replacement IV line, they determined they wanted to do a fluoroscope (run dye through his veins to get a better look) for the PICC on his arm ... which meant another IV. We're averaging no less than three (3) sticks per attempt, and that's now with the ultrasound and decreased swelling. The IV team was so sorry, because they could see how upset he was getting and frustrated by their inability to find a good vein. After they were done, they related a story about a father who 'threatened' them that they would only get one shot at getting the line in -- talk about adding pressure to an already tense situation; and then how the dad then hovered over the IV team arm as they inserted the needle. Luckily, in that situation it only took one attempt. I wish I could say the same was true for Cole.

Luckily, the PICC insertion went much easier (although it still took 2 attempts) but he was sedated which helped with the pain and when finished, we were able to bring him straight upstairs to begin his feed. And within a few hours, once we determined the PICC to be in good condition, our wonderful nurse (of which we've had many) took out the other two IV lines (one in each arm). So again, we lost two lines, but gained one -- but we're still down one. That leaves two to go (PICC and external shunt).

After which we all rested while watching the Aristocats. Actually there was some napping once we all calmed down from the evening and morning adventures. We're so thankful for caring and skilled doctors, nurses, and technicians who care and love Cole as much as we do.

Update 8:00 - A whole slew of procedures

Not a lot of major procedures, but a fair amount of moderate and minor procedures. For example, this morning we had an MRI to rule out a few things from earlier this week. That meant we had to stop his feeds and medicine, including pain medication at midnight and early morning hours because they wanted to sedate him based on breathing problems he has had. Then they discovered that his external drain was too far into the ventricle and needed to be backed out a bit and re-stitched to his scalp (at bedside). And amidst all of this his IV from Tu failed and had to be replaced. It took three attempts using an ultrasound to find a vein that would work. The first stick looked good, but then they ended up going through it and had to start again. The second one wouldn't work after several repositioning. The final stick was messy and resulted in us replacing all of his bed linen. As a result, we've also decided to install a PICC line (which is long enough to go from his arm to the large vein that enters the heart). It's more stable and we don't want to risk any more lines that fail and given we'll be here into next week - it seems like a good option. If the IV team had been able to get him in the first stick, we might have waited. But based on the above events, we've opted for the PICC on Saturday.

And the whole process wore him out (and us a little bit)

The really good news is we've been able to hold Cole a whole lot more, which as a side benefit the doctors indicate will help with the swelling. We're noticing improvements over the last few days, although we still haven't been able to check out his pupils due to how swollen his eyes are. To top it off, the swelling has resulted in some discoloration around his eyes which resembles a little bit of bruising. So we may leave next week with two 'black eyes'.

He's still sore and doesn't like to be picked up too much or jostled, but settles down much faster when he is. And we have found him moving his arms around, making more noises, including his patented tongue sucking (or at least the start of it) - which is encouraging. We're optimistic we'll get to see those beautiful bright eyes again very soon. Thanks again for everyone's love, prayers, and support.

2pm - mostly a day of waiting

Today we do not have a lot to report. They did remove Cole's surgery drain and that went very well and he barely fussed. So that is one more tube removed. Yea! He is still swollen about the same amount. He is moving a little more including reaching out and grabbing the bars of the crib. Tomorrow we are scheduled for a MRI to rule out any possible brain reasons that Cole has been slow to become more active. We are hoping that his shunt will be re-internalized on Monday or Tuesday of next week. Shawn's cousin Amee who is here from Canada checking out the University of Utah as a possible school to attend for medical school, came up to visit and that was very nice for us, although Cole slept through her visit. We have been playing a cd of Primary songs that Grandma Jackie plays for him when he is visiting. It is very sweet and calming and he very much loves it. Thanks Grandma Jackie! We'll let you know when we have more news.

Goodnight - 10:30pm

Well, we are settled in for the evening.

Cole seems to be stable and no changes since the last post. He's a little more active (as seen by him grabbing onto the crib bars). Cole's Grandma Jacquie and Grandpa Keith came to visit tonight. Cole responds so calmly to his Grandma's voice. They have a very special relationship. And we were so grateful for their support and love as well. We're bedding down for the night. Good night and God bless.

One of the many terrific nurses (Kylie)

His doctor has requested Cole only lay on his side to help with his head shape and swelling and it takes at least two of us to roll him over using a series of swadling moves with blankets and pillows

-- it's not a series of moves he particularly cares for, but he is beginning to tolerate it more (in both pain and attitude, both of which are connected.

His little mouth gets so dry up here especially since we're not giving him anything by mouth. So they've got these nifty swabs to help ease the dryness of his lips and mouth -- and bonus, it smells like pink bubblegum!

You'll notice that his skill on his face looks shiny like it's got lotion on it or it's wet -- it's not, it's just pulled so taunt from the swelling. And the picture doesn't really do the swelling around his eyes justice. But we're finally all settled in for the evening and hopefully get some rest. Thanks Grandma for bringing your camera up while we pick up the battery charger from home.

6:30pm and we're into a regular room - Yea!!!!!!

So we are out of the PICU and into a regular room on the Neurotrama floor. The staff in the PICU were absolutely amazing, and as Teri said before, it was nice to have that very individualized attention. However, the PICU is also a very busy place with only curtains separating the beds. It can be quite noisy and of course it is hard to see those sweet children in such distress. So it is nice to be in our own room. And we are really excited we have an individual room this time. It's funny how exciting simple things can be in these type of circumstances.

Prior to leaving the PICU they removed Cole's central line, so one more tube removed. The also removed his foley, so he is peeing into a diaper again and his kidneys appear to be working really well. They have also begun giving him some Pedialite through his G-tube but are taking that very slow so we don't end up aggravating his reflux and causing him to vomit. His face and head are very swollen but we expected that. His eyelids are so swollen, his eyelashes are curling upward. It looks like we've use an eyelash curler on him. He continues to slowly move his arms and legs more often and is vocalizing some with grunts and humming. However, our Neruosurgeon is concerned he is not more alert, so he has ordered an MRI tomorrow to rule out some things. We are expecting that his shunt will be re-internalized Monday, so we will be spending the weekend here.

We are very touched by all the love and prayers so many people are sending our way.

P.S. we are working on finding our camera battery charger so hopefully in the next couple of days we will be able to publish some new pictures.

Update 10:00am - More Progress

We had a pretty uneventful night. Hurray for uneventful!!

After the breathing tube was removed, he hardly stirred and quite comfortably (as much as one can be with major head and brain surgery) went back to sleep. They've been alternating morphine and tylenol to help with pain bouts. This morning, we removed the catheter and then a little while later we removed his arterial line in his hand. They're planning on removing his central line (the one that goes into his neck into his main artery) and so they reinstalled an IV, but were still down two lines - which is how we begin to count progress towards moving onward and out of the hospital (that and all of his blood, gas, sodium, etc. levels).

At his doctor's orders, we're rotating him every two hours from side to side. He doesn't actually like to lay on his side at home and will work and wiggle himself over on to his back if left to his own will. But we've got the luxury of pillows and blankets to help stabilize him - although it is a little awkward given he's also at a bit of an angle. We deduced that we could, using the small blanket underneath him, slide him from left to right in the crib (or up and down) avoiding to picking it up too much. He's still quite tender and sore and extra moving is not his favorite thing. In fact he expressed some displeasure by having some de-saturation spells this morning as we were moving him. Between the moving, crying, and his newly rounded head, we discovered he tended to drop his chin too far, making it difficult for him to get adequate oxygen.

While I'd prefer to be in our own room (as opposed to the PICU and in practically the middle of the floor) I have to say how grateful I really am for our positions. When his numbers start dropping between the lights and buzzers and our nurse, we become immediately surrounded by a whole team of about 10-12 people. It's amazing and awesome to experience. In fact it was one of the Respiratory Technicians who discovered that by raising his jaw bone up a bit, his color and air flow improve dramatically. Let's hear it for the highly trained and talented people up here!!

They've also begun feedings, although only clear liquid at this point through his feeding tube - and at a pretty slow rate. And we're monitoring that closely as well.

Also, we are suspecting that he's awake (at least for some of the time). Unfortunately between the general surgery swelling, the extra fluid swelling, and potentially taking off the bandage early swelling, he can't open his eyes as that area is soooo swollen!! Besides the movements he's making, he's starting vocalizing with Shawn and me and repeating back some of the sounds we're making. They've considered giving him something for what one of the doctors affectionately refers to as the 'Michelin Man' look. But based on the understanding that we would expect his eyes to be swollen for a couple of days after a surgery of this magnitude and the fact that his urine outputs remain within expected ranges, we're electing to not give him that particular drug right now.

We're trying to find our battery charger (I could have SWORN I packed it) but otherwise we'll have to get creative on that front - so no pictures today.

10:45pm - Ventilation tube removed!!!

Woo Hoooo! They were able to remove Cole's ventilation tube! And he pulled through it like a trouper - barely even fussing. It was nice to hear him make some noise - we haven't heard a peep out of him because the vent tube kept his vocal cords from functioning. He is now on a little oxygen by nasal cannula and seems to be doing well. The doctors do not seem to worried that he still has not opened his eyes. He continues to stir off and on between sleeping soundly. We are rotating his position every 2 hours. The poor guy is still so swollen, but you can clearly see that his head is a much more round shape that it was before. Hopefully he will continue on this path. We will post some pictures of him without his vent tube tomorrow - the battery died on our camera so we are charging it.

Settling down, progressing

Ok, how about some good news?

No more seizures since this morning. Yeahhhhhh! He just got hooked up for a EEG to check for any evidence of recent seizures, but we certainly haven't seen any external evidence. His external shunt (called an EVD) appears to be working just fine.

• They want him to wake up and to be able to remove his breathing tube. So they are slower to give morphine and instead giving Tylenol, which seems to be fine, he doesn't seem to be in much pain. Also, they are slowly turning down the rate on his respirator, pushing him to breath for himself. We're hoping that he will be extubated this evening.

• He is moving his arms around much more, but still is not awake or opening his eyes. The plastic surgeon came by and said his incision looks really good and they hope by Thursday to remove the drain that drains the excess fluid under his scalp from the surgery. So we are going to post some pictures. The picture you will see will be the day before surgery. If you do not want to see some of the more intense pictures of how he looks now, don't click on the slide show. But if you do want to see, go ahead. The ridge you might see along his brow, is the drain they expect to remove Thursday. It leads to a bulb gathering fluid and blood which is positioned on the left side of his head. The tube coming out of his head is the external shunt, regulating his spinal fluid pressure. You will see that he has a zig-zag scar - and that is on purpose. Hair doesn't grow on the scar, so the zig-zag makes it so when his hair gets wet, it will be less obvious - but it sure looks grusome.

• Cole's head is much rounder now. It is still quite swollen. The tube coming out his nose is his breathing tube. Also, the pictures with all the wires on his head is from the EEG. So that's about it for now.

We are feeling much calmer than we were this morning. Here's the pics, scroll down as you desire. And remember you can pause the show by hovering over the pictures with your mouse and then using the video control keys.

Update 9:15 - Surgery Update

From the time I made it back into the ICU (after being kicked out for shift change) Cole had another seizure. When I got to his bed, his Neurosurgeon and his team were at his bedside checking his shunt (inserting a very, very small needle through the skin in his scalp into the shunt) for pressure. They had reviewed the pictures from his CT scan (from just about 30-40 min earlier) and noticed his ventricles were enlarged. They weren't dangerously enlarged, but they were substantially increased. And they couldn't rule out whether it was his shunt or whether his brain was now spreading out to take advantage of the roomier space.

So, they whisked him off to the operating room, electing to remove the shunt and install an external drain (see post from Oct 2007 as a reminder for what they looked like / entailed). Surgery should be quick, although they're adding some agents to his blood to reduce any more blood loss, since he's more susceptible right now, so that procedure may add a few minutes.

They're trying to rule out things now and the shunt is definitely something that can 'control' (as much as anything in the human body).

We had been waiting in the parents room about 35 min and his Dr came up and confirmed the shunt had failed. So weird! Something that had worked fine before during, and even after surgery (yes they test them before the sew him up) had in the space of a few hours malfunctioned. His doctor indicated that seizures could be caused by the pressure, although we won't now until things start to settle down (who's ready for things to settle down - me, me, me!!!) They will also run a culture on the fluid to check for infection. Also unlikely, but certainly worth checking. Shunt infections are not to be trifled with. We have first hand experience with that situation. As far as reinstalling a shunt, that will have to wait a few days (in fact it could be as late as early next week) - it all depends on how he does over the next day or so.

So we're hanging out waiting to be called back to the ICU again. I guess Cole decided since he didn't get his extra hospital days in advance of his procedure, he'd get them added to the back end of his stay. Silly little boy, doesn't he know we'll be up at the hospital in about 2 weeks for a check up :-D

Update 6:45 am - Night/Early morning in ICU

Cole had a pretty quiet night in ICU. He was definitely stirring more and they even got him turned over a little on to his side. Shawn held the late night shift while I slept a bit -- the later part of that statement being more true -- a very little bit. I got up and relieved him about ~2:45.

He is still doing a little bit of self-soothing where he sucks on his tongue. That in turn creates some extra secretions, which having the big tube in your nose and mouth, makes it difficult to clear. The nurse does a great job of watching all of his monitors (of which there are no less than four) and recording everything. On one of those occasions at around 5:30 she noticed that his arm, specifically his right arm was twitching a bit - rhythmically - he was having a small seizure. Cole's never had seizures before. We know it's possible, but it's also not a foregone conclusion with his condition. They were able to give him some medication which almost immediately halted the seizure. His heart rate and blood pressure were up a bit (probably near my levels) but pretty understandable. Once he calmed down things started going back to normal. They contacted all of the doctors who performed surgery the Plastic surgeon who was responsible for reshaping his head as well as the Neurosurgeon who is responsible for his shunt. They confirmed that his CT scan from last night did have some blood showing, the amount was not significant and it's possible to have a seizure under those conditions.

We were settling back to monitoring and charting when his nurse noticed he was posturing (where the body goes more rigid than tapping), another form of seizures. The attending resident prescribed an additional dosage of medication, which had almost immediate results - again. Luckily, he was scheduled for another CT scan this morning, so they whisked him off, as much as you can do tied and hooked up to monitors and bags.

I've been kicked out of the ICU for their morning shift change (which is why I'm able to post an update so immediate to the event) but that will allow the doctors to review the results and get more information. They discussed hooking him up to another device that will monitor the electrical impulses in his head also as a precaution. That's a good thing. However, they will take off his head bandages as it involves placing devices and electrodes on his little noggin. They've indicated it's safe to take off the bandages at this point (my research suggests they probably would have come off tomorrow anyway) - it's just going to amp up the pictures we'll be posting. We'll provide some warnings for the more squeamish. I know I sent some of you links to some of our parents blogs (e.g., Rosamonds -- thanks you guys) to 'prepare' folks for what Cole would likely look like. But it's still breaks your heart a little to see their tender body so puffy and full of stuff - no matter if it's your child or that of a friend.

Speaking of puffy, it's probably not nearly as clear from the pictures, but if you'll look at the wrists and legs you can see where all of the excess fluid they're pumping into him is going.

There's still a few more things they are tracking - like one pupil is still slightly larger than the other, but he's still medicated to help him rest. And with the introduction of seizures, I think they want to focus on that to start with.

Thank you again for all of your well wishes and prayers - we absolutely need them right now.

A couple of pictures

Here are a couple of early pictures. It's 8:45 and Cole is slowly beginning to wake up. He is currently beginning to move his hands some, rock his head slightly and suck his tongue some. We love how they cut his gauze so it looks like a jester cap.

7:40 - ICU shift change

Well, we've been kicked out of the ICU for shift change. Happens twice a day for an hour. Probably also forces parents to take a break and get something to eat - which is exactly what we did. And it was a good thing. The last couple of hours have been a bit more stressful, although in general things are still going well.

Aften they got Cole settled in the ICU they let us come see him. He looked very peaceful. His entire head is covered in gauze, so only his sweet little face is peaking through (we will post a picture soon). They saved all his beautiful hair for us.

The stress started when we arrived and they asked us if his pupils were normally different sizes. Our internal reaction was "NO! He wasn't that way when we came in - so fix him!!!!" But we were a little more contained and gave them the information they needed. So, they decided to get him a CT scan to make sure he didn't have a brain bleed. But before they could take him to CT, he decided to let his blood pressure fall in response to the morphine they gave him. So they spent the next 30 min pushing fluids to bring his pressure back up. Which it did and they took him off to CT. The CT results showed no apparent bleeding, so they think his eyes are just a reaction to the sedatives (Said a Give!! (if you don't know what that refers to, watch Young Frankenstein)).

So, it is almost time for us to go back and stroke our little Coles arm and hum and sing to him. He is so very precious. We love him so very much and are so grateful that Heavenly Father allowed us to spend some time with him here on earth. We treasure each beautiful moment. Thanks again for all your concern. Our posts may be a little more spread out as we do not have wireless access in the ICU. But we will make an effort to keep you all informed. Thanks for you Love.

Update 4:15 - Surgery Finished

Dr Siddiqi stopped by the waiting room and let us know everything went fine and as expected. They got the tubes in and skull pieces put back just as they wanted. He's still intibated to help with breathing and they let us know they'll probably leave in the tube until he starts to wake up more.

He's being transfered to recovery and we'll get to go back and see our little trooper in the next 20 or so minutes. So we may go quiet a bit for a bit until we're set up in intensive care.

But good news, really good news - we're out of the surgery. Thanks for everyone's prayers and well wishes. Stand by for pictures of our handsome son.

2:45 and next step completed

We just got the next update call from the OR. The plastic surgeon has successfully placed the skull bones where they want them. All continues to go well. The did have to give Cole some blood. They expect about another 1 1/2 hrs in the OR and then we are off to recovery.

Part way Through!

We just got a visit from Dr. Walker, Cole's neurosurgeon. He is wonderful and we adore him. He has such a sweet face and is so dedicated to treating children with hydrocephalus.

He said everything is going as expected. He has finished his initial part of the surgery - Dr. Walker was responsible for removing the skull bone. He said "boy he has a thick skull!" which seems fit right in with both his birth and adopted families. :D

Dr. Siddiqi will now take over to reconstruct Cole's skull. Then Dr. Walker will reconnect Cole's shunt. His shunt valve does not have to be replaced, but recently Cole's shunt catheter (the tube that goes from inside Cole's brain to the valve under his scalp) was recalled by the Manufacturer and so Dr. Walker will replace that at the end of the surgery. Cole is still expected to be in for another 3 or so hours. We will keep updating.

Brief Update

At 10:30 the OR nurse called to let us know they had successfully placed the three lines in his circulatory system: an IV, an arterial line for monitoring and a central line for the blood transfusions. As usual with Cole, they had a difficult time placing the lines, but it was much easier when he was under anesthesia. The OR nurse said they will occasionally call us with updates and we will try and keep the site updated too.

Checked In

Well, this is a change of pace. For once, Cole had a scheduled surgery, and we were able to check in through regular registration. In the past, each time Cole had a scheduled surgery, he always found a way to insure that we would have to go through the ER the night before and spend 6-8 hrs in the ER. We got up early and took the dogs to boarding. They were very happy, both for the car ride and to be able to play with all their friends at Camp Bark-a-lot. All went well in pre-surgery, with the small exception that once again they had a hard time placing his IV. But he was a trouper! Dr. Siddiqi, the plastic surgeon, met with us and reviewed his surgery and took pictures of all sides of Cole's head. Maybe that helps him remember how to put him back together.




So now, we are in the waiting area. The surgery is expected to take approximatley 5 hrs, so we

went and got donuts from the cafeteria. We gave a priesthood blessing to Cole last night.

We are so grateful for the peace that knowledge of the Plan of Salvation and of the Atonement brings. And so grateful to be have the power of the Priesthood in our home. Thanks to everyone for all your prayers. We will post another update when we know more. So stay tuned.

Back to Hospital

For those who might not know, Cole is scheduled to go in for a fairly major surgery - cranial reconstruction for a condition called Craniosynostosis (suctures in his skull have prematurely fused together) It's somewhat more problematic due to the fact that his skull plates overlapped (due to overdrainage) when his first shunt failed 3 months after installation.

He's had plenty of room in that nogin of his - now and his ventricles look good - now, but we want to avoid a problem down the road. Also his shunt catheter (the piece that runs from the ventricle to the shunt has been recalled (this is where you can shake your head - we did). The doctors didn't want to touch it if it was working as intended, which it was, since new shunts have a %50% chance of failure (more head shaking would also be ok here) but since they're going in, they're going to take care of it and hopefully save us some surgery down the road.

The procedure will take 5-6 hours. It will start by - hold on to your mouse for this one -
[1] shaving off all of those beautiful locks of hair,
[2] making an incision running across the top of his head from ear to ear,
[3] peeling forward and backward the skin covering his face and back of his head to reveal the skull,
[4] removing the old catheter and installing a drain for surgery,
[5] cutting off the top of the skull (think of a haircut using a bowl),
[6] cutting apart his skull into the pieces and segments they would expect to see,
[7] replacing the skull segments,
[8] reinstalling the shunt catheter,
[9] Sewing up his incision (in a zig zag fashion to accomodate for hair growth (which we expect to be plentiful) and reduce visibility... and that's it.

They expect him to be in the Intensive Care for 1-2 days and then admitted with a hospital stay of approximately 5-7 days. They're closely monitoring Cole given the trouble he had after his last botox injections, so it's conceivable that we could be on the longer end of that stay.

As always, we're planning on using this blog to update folks on the comings and goings. They are really good at the hospital at keeping us informed all thorugh the surgery. For example, typically we meet the OR nurse before we even go back and she'll then call us in the waiting room several times during surgery to give us updates and see if we have any questions. Once they're done, the surgeon(s) come out and give us more detailed updates on what transpired, what to expect, problems or complications (we're hoping to skip this piece), and let us know how soon we an expect to see him in recovery.

Then they'll take us back - one at a time (it's pretty limited on space) and then once he's become conscious, they'll release him to his room or in our case, they'll bring the other parent back. So watch this space for updates and email with any questions or post with any comments.

We appreciate everyone's love and support of us and most especially of Cole.

Happy Birthday Matthew

And thanks SOOO much for letting us tag along for the birthday celebration -- we all had a GREAT TIME!!!

We spent last Saturday at Lagoon with Aunt Jeni, Uncle Brenden, and the whole clan. We realy had a great time. Besides the three of us, only Jordan had been to Lagoon before. And Matthew hadn't ever been to an amusement park. (I can't even imagine such a thing growing up in California and practically living at Disneyland, Knott's BerryFarm, and Magic Mountain -- especially when someone came to town.)

So not too surprising, everything was AWESOME, with a capital A for Matthew. The rest of us had fun, but I think it paled in comparison to Matt's fun (although his enthusiasm was contagious).

The first ride of the day after we found a locker and dropped off our blankets and cooler stuffed with chicken and water (not combined) was the newest ride in the park called Jumping Dragon. It was a bit and Matthew swears he was going to be propelled out of the seat with every turn of the ride. Thank goodness for safety bars.

After that, we made it over to another fairly new ride called Odysea (the picture below was tagged from the web, since we all were able to ride -- including Cole (with an adult). I had the camera but spent so much trying to keep Cole and me dry, no pictures.

But as you can see, we were no worse for the wear ... just a little wet.

We went on a few more rides although we were so wrapped up we apparently stopped taking pictures, so I've posted in more pictures from the web, most of Matthew's favorites (of the day).


Samurai (the kids were very brave for this one, especially because we did this one at dusk which intensifies the experience)


JetStar 2 (Speedly little roller coaster)


Spider (one of Teri's favorites) where the four man car spins on the tracks while going up and down through it's twists and turns. Matthew and Teri rode on this one together with Jeni and Autumn on the other side. Apparently Autumn kept her eyes closed almost the whole time. Whereas Matthew and Teri screamed hysterically between laughing fits.


Turn of the Century (big old swings that raises and rotates). Matthew rode with Teri again for this one and kwhile laughing kept repeating the phrase 'well this isn't so bad is it', over and over.

After a few rides, we headed over to Laguna Beach... sadly the camera didn't work at all with Teri in her swimming suit ..... Shawn, Jeni, Teri, Autumn, and Cole floated around the river (water temperature recorded at 70 degrees ... it was a nice day but cold water). Then Shawn, Brenden, Matthew, and Autumn took a few rides down the assorted water slides. We hung out inthe sunshine and warmed up and then headed back to the blanket and broke out lunch.

Once we were nourished, we realized some of the party wasn't nearly wet enough so we headed up to Rattlesnake Rapids -round boats spinning while floating down 'rapids'. Brenden, Teri, and Cole hung out on top. Hey someone had to take pictures!!

See how happy (and relatively dry) everyone looks... clearly they don't know about the water fall ahead.

Ah yes, the waterfall. See Aunt Jeni sacrifice (her daughter) to stay dry!!! Hey Autumn's little she likes the water and she'll dry fast! (see Jeni's pics for even better close ups!)

In fact, Autumn (and Matt) like getting wet so much, they went again - right away. Not a big line for the ride in the late afternoon ... hmm, wonder why? Uncle Shawn was a good sport and went with them

Yep, there's that waterfall again! I think Autumn may have been more wet than she was floating around the river in Laguna beach.

We decided to dry off and head over for some more traditional rides on the midway (like the scrambler and the tilt-a-wirl). Cole was enjoying some dinner so we were able to take some shots of the family loaded up. It had nothing to do with not wanting to be with Autumn, affectionately known as the screamer.

Brenden was the lucky rider... I can't tell, is he looking for ear plugs or an plotting his escape.


See the ride hasn't ever started, and she's nearly beside herself with anticipation ... Uncle Brenden too! But both clearly warmed up. (I couldn't get a picture of the others in motion, but I have lot of other pictures of other people who went swirling by - but just imagine similar looks!)

Jordan and Uncle Shawn are here waiting for a ride a ride called the Rocket that shoots the rider up 200 ft straight up in less than 3 seconds, the initial blast creates a force on the rider of 4.5 G upward and then 2 G downward (according to the web site)

It was a fun day and while we're old and exhausted by the end of the day - but we'll go with you guys again in a heart beat. Hopefully we can make it again before the end of the season.