Christmas

We had a pretty quiet Christmas. We mostly hung around the house and kept to ourselves. We weren't interested in going out where everywhere we went someone seemed to be hacking up a lung in some flu and cold rampage. And our family and friends, who were sick were good enouh to keep some distance. None of us are anxious to catch something and give it to Cole or end up back in the hospital treating some nasty string of RSV. We spend enough time up at the hospital for routine visits.

Being home gave all of us some great time to spend together actually enjoying Christmas and the holidays - which was nice. Maybe we'll make this a tradition EVERY year.

Poor little guy continues to struggle with ezcema so we're still running the feeding tube up and over - can't wait until January for the gTube and get rid of the whole thing on his face. I think he must feel the same. Everyonce in a while I think he catches a glimse or shadow of the tube - but generally he leaves it alone. Mostly he just wants to run and scratch his face. As one of those people who hates it when someone says 'Just Don't Scratch It" - I totally understand. We are kindred spirits.

Although, Cole is such a sweet little boy - he's generally in a pretty good mood. Considering all of the things he's been faced with and continues to be faced with, throughout it - he's so easy going. Thank Goodness!! And if he can sleep like this amidst the cooking and dogs and home improvement projects - Christmas morning will be a breeze.

Nobody knows the trouble I've seen ...

Poor little Cole. On top of everything, he's developed eczema. Which probably would be mostly annoying for him - but the tape used to hold his feeding tube in has aggravated the eczema and then it got infected. 

We went to instacare and they prescribed some antibiotics to help clear it up. Between applications we're supposed to use diaper cream - apparently it has an amazing to dry things up. We think it's working - but it leaves him as quite a site. And since we need to continue with the tube feeds until we're evaluated for the Gtube early next year we had to be creative with adhering it to his face. 

                                                          

You can almost see that look of 'You've got to be kidding' in his face. 

Luckily, he's got a cool new hat to distract from his cheeks!!

Best Buddies

For those of you who don't know, and we can't imagine there are too many of you, we currently have three dogs.

Tucker, who is a shepherd / beagle mix, generally likes people - he thinks he IS people. He is a good watch dog and as such, generally aloof.


Abagail (Abby), who is a basset / lab mix, generally likes most dogs - but is very nervous around people (besides us) until she gets to know you. She tends to hang back and pace around when others are here, but she actually makes good a snuggler and nuzzler.


Finally, Ellie who is a lab / wirehair mix is our puppy (at almost 18 months).She is a dog's dog. She likes dogs, cats (she's especially found of walking up and giving the cats a few good licks right on their face - - she's not their favorite), and especially people. And she LOVES Cole - ever since we brought him home.

While the other two dogs were curious, once Cole had been sufficiently 'smelled' over - they weren't interested anymore. Apparently he didn't smell sufficiently like a toy or treat to hold their attention. Not Ellie, she will sit and watch Cole in his swing on the bed, in his bouncy chair, while we're holding him (and it's not that 'watching as a means of sizing up for a snack' watching). If he starts to fuss and Shawn and I aren't around, Ellie gets quite anxious and comes to find us (like she does if Tucker or Abby are outside and want to come in).

When he's in his swing, she likes to place her muzzle down in the swing to watch him - often stopping the swinging - not as helpful. If we lay Cole down near one of the dogs they all scatter - except Ellie. They both love to watch TV together. Cole is partial to The Office and Law and Order (Shawn's influence) and Ellie is partial to any show with animals, especially the CBS Sunday morning show with their segment at the end with unadulterated nature noises.
They are the best of buds. We suspect Ellie is biding her time until Cole will start throwing a ball with her.

The Great Pumpkin

            
Cole's first Halloween was as a giant pumpkin - perhaps not his first choice, but the stores were all out of the ninja or firefighter costumes. We showed off the costume first on the Saturday before Halloween at the Hydrocelphalus party up at Primary Children's hospital. It was great to see all of the kids having a great time. 

                           

Holy cow the parents in the committee really went above and beyond. Their were games of chance and skill and then a cake walk - or in this case a pumpkin walk. There was all kinds of gross and disgusting foods (i.e., floating eyeballs, dripping blood) all the kinds of things the kids loved. 

                            

Then on Halloween, as has been our tradition for the past 10 years, we spun and gave away cotton candy to the neighbors, and their families, and their family's family, and the people they told at work - all in all we gave away over 225 bags of cotton candy. It was a nice night - not too cold. Shawn's mom came over and watched Cole while we got most of it all spun. Typically we spin all night long while the kids are coming - it's quite a sight. This year, we had it all spun by 6:00, about the time we got our first trick-or-treater. 

     

So we were able to visit more with people and check out costumes. Typically we're so busy and covered in sugar - we hardly have time to enjoy the night. But it's great fun watching the kids faces as they approach the house and see & smell (the smell goes through the neighborhood) the cotton candy - so we can't decide what we'll do next year. But it was a tremendous help to have Jacquie help out with Cole this year for sure. 

And ... We're Back Home

We are now home again after another 5 days at Primary's. As for the facial palsy and related eating problems, the real nasty reasons for those difficulties have been ruled out. That is the good news. The annoying news is, they don't know what created an "insult" to his #7 facial nerve. We know it was somehow connected to his shunt re-insertion, but there is no clear way that that nerve was hurt, we only know that it was. Because they were able to rule out the nasty reasons, they suspect that it will resolve itself over the next 3-8 weeks. They were also able to determine that he is not aspirating his food into his lungs which means we were able to go back to feeding him by mouth.

He is only taking 10-50 cc's of his 90 by mouth so we then feed the remainder by his feeding tube. Meanwhile we are providing support for that weak left side cheek while he is eating. As for his stopping breathing when mad, again, they were able to rule out some serious concerns e.g., heart defects. We have noticed that these episodes only happen when he is angry, and only get worse when his body is feeling crappy/sick. Luckily, he has been feeling much better in general over the last 4 days and so the frequency and intensity of these episodes have decreased dramatically. The doctor thinks he has Breath Holding Spells, which children often grow out of and are not dangerous because they only happen while mad and at the very worst, he will pass out and start breathing again, (which we have seen on 3 occasions - scary to watch but ultimately not dangerous).

Soooo, they sent us home - YEA! We very much love and are so grateful for Primary Children's Hospital, but it is so nice to be home. We are overwhelmed by the number of people who have been praying for our family. I know that these prayers have an impact and it lifts us up. Thank you.

Holy Crap!

Holy Crap! You're not going to believe this, I know we don't.

We were sent home Thursday, but we had been noticing the left side of Cole's face was not moving like the right side. The more we spent time with him, we realized his left side of his face was acting like it was paralized e.g.,the left side of his mouth was not moving and his left eye was not blinking and not closing correctly. Also, his sucking/swallowing reflex was all messed up and he wasn't eating well. We had actually seen the facial abnormalities Wednesday after his shunt surgery, but dismissed it as part ofhis recovering from surgery. We saw our Pediatrition on Friday and she sent us right back to Primary's ER (we really love her tenacity). She was also worried about how dusky his color is when he gets really mad. After 9 hrs in the ER, we were re-admitted to Primary's.

Sooooo, we are back at the hospital. In the ER they said the CT scan did not show him having a subdural bleed, which was one of their bigger fears. So far, Cole had an MRI on Saturday but we have not heard back from Neurology about their findings from the MRI. Cole is not in pain, but just like us, I'm sure he'd rather be home. Hopefully we can figure out what is going on. We'll let you know when we have more information

Shunts are Not For Whimps, II

Thanks again to everyone's good thoughts and sweet prayers - we're still seeing the good signs of a successful surgery. They internalized his new shunt (on the left side this time - got to find an area on his little head without sutures) so now he has matching incisions on the left side of his little body (behind his ear where they start fishing the tube, and to the left of his belly buttonwhere they check the tube for placement! 

     Recovery is and has always been a little rough - but we're all trying to manage through it. He's, as you can imagine, in a fair amount of pain - it is after all brain surgery. They gave him some lortab which does provide some relief, although it has (and did today) cause periods of apnea (where he stops breathing). Early in our stay we spoke with a pediatrician about his apnea (he had four episodes the first two days we were here). They ran a number of tests looking for deficiencies in iron, for example. All of the tests came back negative. They suggested it could be an over-active vegal (vegas - ?) nerve which can, in some children, cause them to black out when they get to excited or too aggravated. Apparently they will eventually grow out of it - and usually once they 'pass out' they resume breathing, which is good.

He's just starting to eat a little by bottle - mostly still just tube feeding - too tired. We're hoping we see some improvement once we start reducing all of the antibiotics that tend to irritate his tummy. Which, as you can imagine does wonders for his reflux. They will run a few additional tests on Thu and pending success - they anticipate sending us home. We're hoping for Thu but planning on Fri - just in case. We're all grateful to have so many people who love him and us and are praying for him. We can't wait to get back home and back into our routine. It's miserable walking by his swing and bed and seeing it empty. Ellie, his pal, sniffs around his bed and bouncy chair looking for him. The others are just feeling neglected. It's been just overtwo weeks since we arrived and as wonderful as the nurses and medical professionals are, we're ready to be back home.We've included some new pictures - hopefully nothing too gruesome this time (everything is covered with band aids!). 

These Are Mesmerizing - We Got To Get One of These

One of the best discoveries while we were in the hospital was the introduction of mobiles.About midway through our visit when we were just lying around waiting to be discharged on of the lovely family reps showed up at our room looking for something she could do for us. When we couldn't think of anything, she began to throw out some ideas. One of those ideas was a mobile. We had always been interested in getting a mobile but we just haven't been home long enough to pick one up - so we said yes!

It was a huge hit. Cole was mesmorized by the spinning wheels, clicking arms, and fun tunes. And even though the same songs played over and over, watching Cole light up or drift off to sleep (depending on the tune) we hardly noticed the repetitive tune. We've included a few still shots where Cole's eyes really caught the movement. But we're also including a short (very short) video we short with our still camera. That one is our favorite. Unfortunately, the door to his room was open while the nurses and staff were coming in and out so there is some background noise. But if you look closely you'll notice the sucking on his pacifer speeds up and stops once he 'catches' the mobile in his line of vision. It's priceless.

A Day Without Tubes is Like The Best Day Ever (so far...)

Every once in a while, Cole will cough or spit up hard enough to project that feeding tube right out of his nose. Luckily it doesn't happen that often - but when it does, it's quite an adventure. Serious projectile force action. The feeding tubes, as you might imagine, are not that fun to replace - for him or us. Yes, we have to replace it through his nose and down into his tummy - it's quite an event (and one I wasn't sure we'd be able to master when the hospital indicated we couldn't take him home until we could BOTH demonstrate it), so we're all grateful it doesn't happen all that often.

However, when it does, we take full advantage of it and start snapping even more photos. We think he's such a handsome boy and all the better without silly distracting tubes running across his face. So once we're calm and everyone's had a bath - and I mean everyone - we take a little while to relax.

We shot these pictures all together - just snapping one right after the other - to get a full range of motion and poses. His hair is still wet and so it maintains a little bit of wave, but we really like the stetches and it seems clear that once he gets over the whole episode of blowing a tube - he seems to be in a groove.

Shunts are NOT for Whimps

We came in for our follow up neurosurgery consult on Tue. We’ve noticed that his skull plates are more visible now and his soft spot was more pronounced. His doctor noticed as well and being concerned, ran a CT Scan that day. He determined the shunt was working TOO well and allowing too much to drain out of his head. He scheduled Cole for Surgery for Wed (the next day) to externalize the shunt and actually install two additional external drains (after seeing some bleeding in the scans). He sent us home that afternoon to come back the next day for surgery. We went home and things went well - or so we thought.

   
He had a great feed at 10PM and then began to get fussy which escalated to crying - something pretty unusual for Cole - he's such a mellow baby. He ended up crying and fussing for almost 2 hours. During that time we tried everything - more food, burping, pacifiers, swinging, standing, walking, ride in the car, swinging in car seat, laying on his stomach on our arm, stroking his forehead, singing to him - everything. At about the ~90 min mark, we decided he needed to go to the ER based on possible other possible complications. At the hospital they found all of his levels (white cell count, temperature, etc.) were elevated but within 2 hours his levels were down in the normal-high or low end of the high range - not so scary range. They admitted us to a room and began to run more cultures. Before surgery, they found an infection - which was good they found it before surgery so they could begin also begin antibiotics – but ultimately complicated some things, the least of which being a prolonged stay the greater being potentially more surgeries. He was in surgery a little longer than normal because his tiny veins which tend to create problems for anyone wanting to take blood or administer an IV. The doctors indicate that he did well with the surgery. They proceeded with their original plan by taking out his shunt and installing three drains. 

 They're treating his infection pretty aggressively. In the mean time, he developed a high fever and a few episodes of apnea (stopped breathing) - scary. His fever broke late on thursday and he began eating again - finally. They attempted to install a pic line (into his arm) yesterday to help with the administration of fluids, antibiotics, taking blood, etc. - in fact made several attempts - but those darn veins wouldn't allow it. So, we're exploring other options - potentially a central line. He's already had multiple IV spots fail. 

Amidst all of this one of the saddest things for me and Shawn in all of this is they had to cut off all of his beautiful long locks on the top of his head - but I guess now we'll get a chance to watch it all come in again. But of course the bigger issues involve these new drains and the infection which requires a tight isolation - especially during RSV season. We've had to restrict EVERYONE from coming up to see him for the immediate time - family, friends, Bishop, especially children - yuck for all of us. The doctors have said they won't even consider installing a new shunt until 10days AFTER the infection has past. And we don't want to risk the extending that time by having a reoccurrence with the infection. We'd like to get back to a 'normal' life (as normal as life can be with anew baby). As you can see with the pics, we had to put the feeding tube and oxygen back in - although we were so close to getting rid of both. But, he was having too many episodes where he was desating (Oxygen level dropping two low) and no one, including us, wanted to take a risk or have another episode of apnea - so back in it went. And, while we were excited to get rid of the feeding tube - it seems like a small price if he'll keep getting food. It may just mean more time working on getting him to remember to 'suck a bottle' again. Thank goodness, Shawn has been able to administer several priesthood blessings immediately and on numerous occasions over the last few days.

Our Alabama Kin

Cole has the benefit of having lots of family around him. He has a few less around him with some of his favorite cousins moving to Alabama. Luckily, we all got together this weekend and had a great time before the big move. It was terrific. 

Aunt Penny, who has lots of experience with kids (six of them to be exact) and even more love showered it on Cole. She was so excited to see and tickled to hold him - and he was completely relaxed with her and mesmerized by her touch.

 

          

     

Cousins Alisha, Joseph, and Rachel were just as sweet with Cole. They ticked his feet and under his chin. They stroked his face and head. They were so tender with him and he loved every minute of it. Cousin Micah was lucky enough to be able to play with some of his other cousins. 

     They helped Grandma Jacquie and Dad with all of the various jobs to make Cole comfortable with feeding and oxygen at the slightest request. 

It was great to see and play with everyone before the head down south. We'll miss seeing them more often and look forward to times when we can and connect up with emails and phone calls in the mean time.

 

Let's Go For A Walk

Late in September we participated in the local Hydrocephalus Team Walk. The idea is we  (the royal we – all of us here in Utah) were raising money for the treatment and understanding of Hydrocephalus. For us, it was a great hance to get to know more people – doctors and specialists and families with hydrocephalus since we’re just starting out on this journey.

             

It was a lovely day in Sugar House park and the walk was pretty mild (1 ¼ to 1 ½ mile). We set up a web site, through the national foundation set a target for money – pretty conservative – about $125.00. We sent it out to a few people who set us out to others and before we knew it we exceeded our goals – by almost 100%. WOW. They had a band, breakfast, t-shirts, activities for the kids. A few folks from the national group spoke and they seemed to be as surprised that the Utah chapter raised as much as we did given this was the first walk held in Utah. 

                                                         
We’re looking forward to making it an annual tradition.