Shutterfly

Well this is an opportunity that we can't pass up. Shutterfly is offering free holiday cards for a few words about them on our blog. If you would like more info on this promotion:

click here

I can't say enough how pleased I've been with Shutterfly over the last 5 or so years now. I've used them for lots of picture prints ranging from our wedding, places we've been, children, Christmas Card and Birth announcements and everything in between. I tried something new this year and fell totally in love with it. I took photos of all the projects Rachel did in school and uploaded them to create a wonderful book. I also love the quality of their Calenders (they make great gifts). I will be starting to sort which of the many photos will be honoring our calenders this year shortly. As well has the long process of getting 2 camera shy children to give me a least 3 cute photos for our Christmas Photo Cards.

This is their most popular pose

Tyler is far more willing to give me a smile

Rachel most often has to be bribed.

I hope everyone enjoys the holiday season this year. We are in full holiday swing here and very busy making Santa lists, avoiding elves, and planning fun activities.

Skills and Schedules

This post is dedicated to Tyler's therapist. She has worked so hard over the last two years with him. Tyler has fought us tooth and nail with some of his skill sets for the plain reason of him not being interested in it.



Let's take stacking blocks for example. For the last year and a half we have been trying to get Tyler to stack more than 3 blocks up before he knocks them down. Yes, his eye hand coordination does make this difficult for him. And the boy urge to knock things down is incredibly strong here. But we know he can do it because we have caught him alone in the playroom with a built tower before. Well today, I got rare video of the stacking. He can stack what 8-10 blocks!!! Better watch out Tyler, we are on to you now.


Puzzles have been another point of contention. I've told the therapist for weeks that Tyler can manipulate a puzzle piece from a puzzle we just picked up on loan from the library and get it in the correct slot with minimal physical help from me. These are new to Tyler puzzles. The one yesterday was taken out of the bag 5 mins before this video was taken for the first time. See how he can turn the fire coats around and get the piece in all by himself. Also another skill that we can see him exercising here is scan and seek. We have been working hard to get him to find a specific object within a batch of objects (usually we only have four images to find one image in). Again we utilize the puzzle here. Ask were the fire dog is and he looks at the board and points with accuracy to the dog. There are 10 images on this board.

So I guess our lesson here is to capitalize on practicing skills on Tyler's schedule. Long story short, nothing really new here.

Some Pix from this past month

We have been busy this fall. Here are a few pictures. Note how smiley he is....makes me smiley.

Halloween.

Loves his tractors and trucks.

I believe there is more paint in his hair than on the paper.

Getting loved by Sis.

Grumpy about being loved by Sis.

The next Kidd Rock.

Happy Happy Happy

Tyler is doing great! We had a good MRI the other day and got the all clear to make the next appointment in January. So hopefully we can make it that long and have a medically quiet holiday season.

We have a busy 2 year old for the first time!

Since we tweaked Tyler's shunt in the beginning of September, we've seen a whole new Tyler. With in a few days Tyler started to over all look better. His color and eyes brightened and his appetite picked up again. His eye sight started to improve too. The last couple of weeks have been an interesting transition for all of us to the world of boy 2 year olds. He's finally into everyone's business. Poor Rachel gets the brunt of the whole deal. Tyler loves to get into her face and push her buttons. She finally broke down last week and announced that she doesn't like Tyler anymore. 2 and half years into this ride and the normal 2 year old stuff is what she complains about. Gotta love that girl.

We've lived September up to the fullest since Tyler has been feeling better. We took a day trip to the Boston Children's Museum and spent the better part of the day taking turns chasing two happy kids around. The best part is, the two kids where able to get away from each other and have a couple of hours with one of us and then after lunch we switched kids. We've taken a couple of short hikes into the nearby nature preserve. Ducks are a huge hit with Tyler. He could watch them for hours. We also finally got to Story Land this past weekend. Wow, was that a hit with the kids. The smiles on their faces when we where on the rides was amazing. Tyler found only one ride he didn't come off smiling and after the fact I realize he shouldn't have been on it because of size requirements. But as we were twirling around, he just nestled deeper in my side patiently waiting to say, "Get off Turtles please". But being able to drive his own tractor and antique car well made up for turtles.So we have been busy living a normal life punctuated here and there by a few doctor appointments. We saw neurosurg last week up in Dartmouth. It was a very good visit. Everyone was excited to see how well he responded to the shunt tweak and that his eye sight was definitely improving. We go back up late October for another MRI and followup. The surgeon wants to keep a closer tab on it to make sure Tyler's fluid doesn't move around so much and create symptoms again.

We also took a trip down to meet someone at Boston Children's for a second pair of eyes on Tyler's condition. There seemed to be a bit of miscommunication of why we were there. We were hoping to find someone who would look at the images and confirm we haven't missed something and who was willing to work with our surgeon at Dartmouth. Although he did remind us of facts and information about hydrocephalus which was useful to hear from a different perceptive, it wasn't quite the meeting we were hoping to have. The main point he made was, it doesn't matter a bit where the fluid is in Tyler's head. What matters is that he's acting like he's suppose to.

And he's one hundred percent right. I could give a rat's bum where the fluid is. I just want Tyler to always have that mischievous glint in his eye, that incredibly infectious laugh, and his love of life that seems to permeate his whole being. So for now, we ride the wave of good days and if and when we see Tyler start to look off, we will head back north for another tweak.

Brain is full

Today Tyler had a MRI and a visit with the neurosurgeon. Ben and I are not thrilled. Basically the fluid dynamics in Tyler's head are unchanged. The ventricles are still too small and there is still fluid on the outside of his brain. The ventricles won't expand because there is fluid on the outside of the brain keeping the pressure up which means the shunt works. The fluid on the outside of the brain won't go down because the ventricles don't have the ability to expand to push the brain matter back thus moving the outside fluid out. We don't have any more clear answers as to why Tyler isn't able to see depth correctly and why his eye won't converge properly. Currently the theory is that the fluid on the outside of the brain is putting a bit of pressure on the part of the brain that controls eye movement and that impacts depth perception.

So what is being done? We turned up the shunt all the way so that it takes a lot of pressure for the valve to open to release fluid in the ventricles. Hopefully that will allow the ventricles to increase in size, push the brain matter back, and squeeze that outside fluid out of the way. We will have another MRI in a few weeks to see what's going on with the fluids. If that doesn't work we are looking at more surgery and the addition of a second shunting system for the outside fluids. This is were Ben and I are really questioning this plan. We are talking about getting a fresh pair of eyes on this problem. I get the feeling that Tyler is charting new and eventful ways of doing this. What an amazing kid!

Eyes look good.

We had a very nice visit with the ophthalmologist today. It was very helpful to have our eye therapist at the visit as well. With a quick check, it's determined that Tyler's eye issues look to be neurological in nature. His optic nerve didn't look swollen or other wise damaged. The ophthamologist doesn't want to correct any muscle problem that causes the eye to wander and the problems with depth because she suppects that Tyler's neurological stage is still out of balance. So another call into neuro to set up a MRI and appointment hopefully next week.

Homework.

Tyler enjoying a rare treat! A Popsicle for lunch. Lucky boy. He's also sporting his new hair cut.

So tonight I have been putting a list together of all the hospital visits we've done this year. Tomorrow we see Tyler's eye doctor for his normal 6 month visit. We are hoping to hear some answers to why Tyler's ability to perceive depth has changed since June.

List of Events 2010

March 1- Our last eye appointment with dilation.
March 2- Tipped over High chair. subdural hemorrhage confirmed by MRI. Night of observation. Released March 3 without restrictions and acting normal.
April 9- After a week of flu like symptoms, Went in for a MRI. That night had 1st shunt revision. Same site, changed to a delta 2 valve and longer catheter. Discharged April 11th.
April 19th- Admitted again for leaking sutures. 48 hours of antibiotics and a suture over sew. Released April 21st.
April 28th- MRI and sent home.
May 13th-MRI and schedule surgery.
May 14th- Surgery for 2nd shunt revision. Move location to a frontal right with new valve and catheter. Closed up old site. Despite flu like symptoms released on May 15th.
June 1st- MRI- Showed smaller ventricles.
June 8th- MRI- Right side collapsed and so was brain matter. Left side near collapsed. Fluid now on outside of brain.
June 9th- Surgery for 3rd Shunt revision. Replaced valve only with a programmable valve.
June 10th- MRI and discharge. Very slight increase in fluid in the ventricles.
June 24th- MRI and looks good. Still smaller than baseline with less fluid outside the brain.
July 6th- MRI. Ventricles are near collapse again and more fluid on outside of brain.
July 13th- MRI. Ventricles are expanding again and valve was confirmed at setting before MRI.

Growing up and giving back.

We had a really long but good day up at DHMC today. We left the house at 6:45 for a 9:15 appointment with development, followed by a panel discussion on life in the ICN, and finally a meet and greet with some past and current ICN families. Along the way we picked up the most recent set of MRI images.

The appointment with development was a yearly follow-up to track Tyler's progress. He really wowed them with his vocabulary and speech. If you take into account all of his hospital time he has had his fine and gross motor skills are in great shape. We walked away more sure the his vision issues are holding him back and that we need to re-address his food intake. After his last shunt revision his eyes still don't converge as they should and it is clearly impacting his fine motor skills. The problem with food is that he still gets most of his calories from the toddler formula.

They said Tyler as developed some great coping mechanisms on his own though. He uses his eyes to get the big picture and then does most of the work by touch. Putting pieces into a puzzle, for example, he'll place the piece within an inch and look away while he slides it into the hole. They were happy to see how much he can cope with, but concerned that the scope of his vision problem does not seem to be going away.

After lunch we moved on to the Parent Panel for the ICN Parents Council. Sharron has been working with the ICN Parent Council since about a year ago. They organize events and programs to help ICN families like the March Of Dimes walk. The event today was a panel of ICN veteran parents talking to a new crop of ICN nurses about how they interact with ICN parents and families, and what they can do to help make life in the ICN more bearable. Sharron has done one of these before, this was my first, I was also the only dad on the panel. I had expected it to get emotional, dredging up all those memories, but it turned out to be rather enjoyable. Lots of stories, many about positive events in the ICN, or how some less positive events we handled in thoughtful ways.

We got some good questions and feedback so hopefully it was worthwhile to everyone. Tyler was in his element for most of the session, walking around the large table full of nurses flirting his brains out. Finally we went up to the ICN to meet some of the families that have babies in the ICN now.

Quick update.

Just a quick update, Neurosurgery says we are always welcome to have Tyler checked out. She did say that from what I'm able to tell her this sounds more like an eye doctor thing. We already have an appointment scheduled for Sept. 1st so we will just wait a little longer to see what's going on. Other than us noticing he is having depth perception problems, Tyler is happy, active, eating, and feisty.

Sad Day.

When we were leaving a particularly fun play date this morning, Tyler was pitching a very typical "I don't want to leave" 2 year old fit. As we reached the car, he stopped screaming and crying long enough to say "I sad! don't want to leave! I sad!" Broke my heart. He's told us for a while when he's happy, but today was the first time I heard him articulate sadness.


We've know for a while that Tyler was having difficulty perceiving depth perception as accurately as he did before his last shunt revision. We have been hoping that it would get back to where it was before so he could continue making his vision stronger. That just hasn't been the case. We called for his vision consultant to come out today with his therapist to hear her opinion. She noticed a marked difference for the worse in his abilities to converge his eyes, a head tilt is back, using touch to find exactly where things are, and an eye turn she hasn't seen this bad in about an year. And as much as I know that this would be confirmed, I still find myself a little sadden by it. I think I was hoping it wasn't as bad as I feared.

She did how ever say she doesn't believe its a cognitive issue. Yeah! Tyler is still making strong strides in all of his development that doesn't have a strong tie to a visual Que. And we see him trying to do what we are asking him, it just seems very hard for him and he stops after a few attempts.

We don't have any answers as to why. I know after all the things he's been through this year a few issues with vision is really not so bad in the grand scheme of things. Maybe tomorrow I can embrace that thought, but for now I am not able to. So, I wait by the phone for neurosurg to call and see what they advise. And life is kinda on hold for a short time until I can figure out a plan for who wants to see him and when.

Long over due!

The first penguin picture since November 2009. And yes it's the same penguin!



Tyler was slightly larger than this penguin when he was 3 weeks old.
He has fallen in love with this skirt.

He really is driving a bus!

Tyler driving a city bus.

Yesterday I took the kids to "Touch a Truck". Basically it's an assembly of all kinds of trucks and service vehicles open to the kids to climb in and explore put on by a charity organization. We saw loaders, dump trucks, ambulances, fire trucks, semi-trucks, police cars, UPS truck, back hoe, and buses to name a few. After 2 hours we still didn't get to see all of them from the driver's seats. Both kids loved it despite all the loud horns. Tyler wanted to be in the driver seat and often screamed when his turn is done. But he really did well waiting his turn and sharing the seat with his sister.
In an ambulance.

We have been busy with good days the last few weeks. Other than the last week were we have been dealing with a slight cold or teeth coming in, Tyler has been a happy active little boy. GI was very happy to see he had gained over a pound since our last visit which was in the middle of all the shunt revisions. Tyler definitely is much heavier to carry now. Also his arms and legs have chucked back up and the shunt tubing down his front is harder to see. That is all due to him eating non stop. He is still a very picky eater, but he is expanding his pallet slowly. He is still very formula dependent, but I did get the ok to drop the bottles of Elecare and solely feed him his splash now. Tomorrow will be his last bottle hopefully.

Tyler seems to be doing very well neurologically too. All the weird wobbles have seemed to stop, like I said he's eating and gaining weight, and he's very busy through out the day. What is more, Tyler is starting another speech explosion. He's asking for what he wants clearly and singing songs. He love "Row Row your Boat" and "Twinkle Twinkle". He also likes to play games. Rachel has been kind enough to include Tyler in her jump rope game. Tyler and I now swing the rope for her while she jumps in front of the rope.

Really the only clue to all the shunt stuff we've dealt with this spring is a change in his vision. It's a very slight change but it seems to be affecting his depth perception and abilities to see specific details in a busy visual field. He can still see very well, show him a person on a bicycle and he wants to pedal his bike. Or when a cat wonders in he sees it and names it correctly. He's unable to find the edge of stairs safely or look at a book comfortably to find a small picture. Plus his eye wonder is more pronounce since his ventricle collapsed. We still don't know if there is still fluid on the outside of the brain putting pressure on the eye bits. He isn't scheduled for another MRI until October. In the mean time he has a development appointment later this month and then an eye appointment. Our eye therapist will be coming out to the eye appointment to explain in those technical terms how Tyler's eyes have changed.
So in the mean time we will have busy fun days enjoying the summer. The water table and the kiddie pool have gotten some hard use this summer as well as the play house that I picked up. He still loves to climb the play structure and proceed to scare the day lights out of me. He thinks it's all in good fun.

Surprise!

So Tyler and I took a quick detour to Lebanon on our way to the beach. The past couple of days he's been a little off. So after a quick call to Neuro, it was decided we should get a quick brain MRI just to be on the safe side.

Tyler has quite the sense of humor. We all expected larger than baseline ventricles because the last MRI showed them re-expanding. No! The ventricles are almost collapsed again. This is where the programmable shunt becomes Neat. All we had to do was reprogram it. We go back up first part of next week for another MRI to make sure the fluid is moving back into the right direction. Never a dull moment.

Doing a Happy Dance!

Today was a good day! Tyler had another MRI (believe this is his 8th over the last 3 months) and a visit with his surgeon today.
Drum roll please. His scan looks much better than the last one. Not quite to his baseline but moving nicely in the right direction. We want things to move slow since we are talking about brain matter being shifted around due to fluid dynamics. His ventricle size has come back up, about half way between his baseline and slits. The fluid around the outside of the right side of the brain is almost completely back to normal, the air pocket is gone, and the fluid on the outside of the left side of the brain is also much smaller. The surgeon drained the fluid off the outside on the right side when she changed the valve in the last surgery. More over the surgeon was very pleased to hear GI was very happy that he gained 1/2 a pound since right after the first revision surgery. Another words, despite not feeling well and having 2 more revisions, Tyler gained some weight on the days he did feel well. I was also able to tell the surgeon that we haven't had any "bad day" over the last two weeks. He's eating very well for me, and not grumpy, the wobbles are gone, he's able to climb better than before this all started. So for now she doesn't need to see us for 3 months unless Tyler starts to look funny again. Wahoo!

On a sad note, we had to say good-bye to one of his neurosurgeons. We haven't seen her a while other than in passing, but still sad to see her leave Dartmouth. We wish her all the luck in her new adventures. Thank you!

HOME!

We are home! We are home early for dinner, bath, and bed. We are home with only 2 doses of IV antibiotics in and one dose of oral antibiotic to be taken at home. The entire car ride was on big conversation with Tyler. He recited what dogs, cats, horses, frogs, and cows say. Requested more food than an army. And demanded, pleaded, and begged to be let out of his car seat and hugged. Once home, he and Rachel twirled around dancing until both fell down and the rest of us where dizzy from watching them. He kept telling us all night that he was "happy!" and had the biggest smile on his face. The drunk wobble gait is gone and he is so bright eyed. He's now in bed winding down and I expect rather early to hear "MOMMY, BOTTLE!" What an amazing kid!

Off to MRI

Poor boy was wheeled out screaming "Mommy!" to get his MRI. Ben went with him this time. The surgeon was in the this morning and said she'll be able to look at the MRI soon after it's taken hopefully.

Dispatches from the night shift.

Tyler is resting comfortably now. The same can't be said for an hour ago. I walked Sharron to the car so that she could go to David's House and get some sleep. When I got back to the room Tyler was just starting to stir. He very quickly went from stir to fit, then to the maddest I've ever seen him. He wanted water, but would not calm down long enough to drink without a boomerang effect. To make matters worse the attending decided to pull some labs to see it was anything more significant than a mad little boy. The fear was that it was possibly an electrolyte imbalance related to the extended NPO period. 3 sticks later they finally struck blood.

I just got the results and his sodium and glucose are both low (not to dangerous levels). He's on an IV with sodium so that should recover nicely on its own. We have been giving him water and we need to advance to his formula to get the glucose moving. From what they tell me in PICU most patients would be on D5 or D10 at this point (IV solution with sugar) but that is not the procedure with neurosurgery patients. I'll have to remember to ask why when I see a resident tomorrow.

While they were trying to pull blood Tyler and I had a nice chat about how he wants to see his kitty "Meow Meow" and doggy "woof woof" and sister (He hasen't decided on a noise for her yet;-).

Hopefully that's it for tonight.

In PICU, Surgery went well.

(Pre OP, NPO for 18 hours and still smiling)

Tyler is out of surgery and recovering nicely in his PICU room. I can't help but think we've been in this room before, oh wait we have.. Everything went fine, we got to see a tired but happy Neurosurgeon coming to talk to us in the waiting room again. At the moment he is very groggy, he should be up and asking for food any time now, followed by a long night of sleep. Although with the anesthesia he could sleep through most of the night.

The surgeon replaced his valve and we are back to a programable. While it is more likely to clog, we can now make changes to the flow-rate without surgery. Life just got a bit more tricky at home, we need to move any magnet related toys out of Tyler's reach. Things are also more complex if we have to take him to the ED, we will have to make sure they can re-program him before he gets an MRI. The hope is that with the ability to fine-tune the shunt we can re-inflate the ventricles and get back on track soon.

Neurosurgery has ordered for another quick-brain MRI tomorrow hopefully we will like what we see.

(Post-Op sound asleep)

Ugh more waiting.

NPO (No food) midnight 24:00 yesterday
Check-in 12:45 pm today
Move to OR 17:10 tonight

I don't know how he did it, but he has been GREAT for us all day!

The current plan is to replace the valve with an adjustable and crank it most of the way up. Hopefully that will re-inflate the ventricles.

More updates as we get them.

3rd times a charm, Right?

Today I took Tyler up to Lebanon because the last couple of days he's been acting a little off. Kinda looks drunk when he walks. He's been very clumsy and tripping over everything. All very subtle and we were having a hard time justifying bringing him up to Lebanon. He has had a bit of a runny nose and a lot of wheezing (which I think is allergies). We weren't sure if he wobbled because he has fluid in his ears or if it was a neurological thing. But I decided after last weeks MRI, we should go there first this time.

After a long 2 hour drive of listening to Tyler say "mommy" in various tones and volumes and having to answer "Tyler" back, we had a quick MRI. You know you have had a lot of MRI's when techs who are not working the machine we had today came out to say "hi, Is Tyler ok?". Tyler wasn't interested in saying "hi", all he wanted to do was leave. He knows the techs on site when they come to bring him back to start fussing. I think the worst part for him is the sticky ear muffs they put on him. That is the only time he cries is when those are put on and then pulled off. They are very sticky and probably hurt like a high quality band-aid and pull hair. Once he got into the bore, he settled down and patiently waited for the 5 minutes of scans to be complete. Then upstairs to the play room for a bit while we wait for the surgeon.

We met with the surgeon and looked at his MRI together. I believed I saw her frown today for the first time. The shunt has taken too much fluid out. His right ventricle (it's were the catheter is) has almost completely shrunk down to collapse. The brain matter is also collapsed with it and the fluid that is now on the outside of the brain is being sucked into the middle too. Good news, no hemorrhaging or areas that look like they have bleed. Bad news, surgery tomorrow for another shunt revision. She is going to put a different size valve onto the existing catheter. This new valve will take out less fluid and allow the ventricle to become plump. You want plump ventricles with a shunt. If the ventricles are too small, the shunt tends to malfunction a lot, too large and you start having symptoms of hydrocephalus.

So, surgery tomorrow for the 3rd time in so many months.

Tyler's 2nd big wagon ride is just over a week away!

http://www.marchforbabies.org/personal_page.asp?w=4081621&pp=3110310&ct=4&u=SharronBenRachelTyler&bt=2


Just over a week before Tyler takes his 2nd wagon ride around the hospital for the March for Babies Walk! Just about every day we are walking around the neighborhood in with the wagon enjoying every second of it. It's not too late to sponsor Tyler. Hope for a beautiful day for us too.

A reminder of Who is driving this Bus!

Tyler is driving this bus!

Once again I was greeted by a cheery neurosurgeon trying hard not to look concerned. She asked about how Tyler was acting which I quickly reply good, how are his pictures. Tyler's shunt is working! Working almost too well. So well, he surprised the surgeon. His ventricles are about half the size they where two weeks ago. And what's more, there is now a lot of fluid surrounding the outside of the brain just under the skull. The concern comes in with bleeding inside the brain. With such a big shift in fluid, there is a high possibility of strained blood vessels breaking. Thankfully, Tyler's MRI does not show any signs of a new bleed today. We spent a good half hour just chatting and watching Tyler be Tyler. The surgeon was amazed at his vocabulary and how well he communicates. He's asking for things specifically using 3 word phrases like "I want a bagel" or "What is this" even adding the appropriate please and thank you to things. He was also busy climbing up and off the chairs and scales and "jumping" (we look like we are jumping but one foot still doesn't quite make it off the ground). The surgeon was very pleased and excited to see how well he's doing.

As far as the plan, watch and see. We will go back in about 6 weeks for another MRI. If before then he has any weirdness, we are to get him up sooner for a MRI. Weirdness would be loss of appetite, fever, vomiting, (add any unpleasant symptom you feel here). For now we watch. If he starts having issues, he may need to have the valve changed out to one with a higher pressure which lets less fluid pass through. Yup that would be another shunt revision. So we are going to sit back enjoy our two year old and take it day by day, turn by turn.

2 YEARS OLD!

Happy Birthday Tyler! His 2 year birthday was last Sunday and it was a great day. He was finally starting to feel better from the virus he had since the surgery. This thing wiped both kids out for over a week. Both kids are now healthy and running around happily.

Tyler really is doing much better. I have high hopes that the MRI on June 1st will show that this shunt is finally working. He's acting like such a two year old, which is great. He's eating and drinking well for really the first time since January. I hope to see a lot of weight gain before his next GI appointment. We've been struggling for a long time to figure out why he isn't gaining weight. We still believe he has a milk and soy allergy, but we are now wondering if his shunt had been slightly malfunctioning enough to effect his appetite. The next couple of month will tell us. Over this ordeal, Tyler had developed a slight limp and a sluggish right side which has gone completely away. His balance is much better and that left eye is mostly back into alignment. This child has always been a talker, but wow it's continuous now. Usually he's telling me about a wagon or asking to play in my car. He loves to be outside. Over all the last week has been busy with activities and trying to get back into a normal routine. The hardest part is Tyler waking up a 5am for the day. And he's hungry (which is great!). He and Rachel share a room and Rachel does not do well at 5am. Never has. So we are all hoping that we can push out his morning bottle over the next couple of weeks to a reasonable time in the morning.

A wagon ride with a purpose.

The last couple of months have been very medically busy. I'd like to take a moment to let people know that Tyler will be walking in the March for Babies with Rachel, Ben and I on June 12th. More like enjoying his famed wagon ride around the hospital. Please take a minute to visit our sponsor page. Even a dollar will be a big help. Thank you!

http://www.marchforbabies.org/personal_page.asp?w=4081621&pp=3110310&ct=4&u=SharronBenRachelTyler&bt=2

Sick Kids

It's been busy here the last two days with sick kids. After 4 days of high fever, we brought Rachel back to the doctors. She has ear infections in both ears. Poor girl. With the antibiotic, she should start feeling better Tuesday or Wednesday. She actually slept better last night for me. Tyler still has a fever. Most likely the same virus Rachel started out with. Of course we have to watch him very closely so that he doesn't develop a post-op or post viral infection. But he wants to eat and drink so we still don't think this is shunt or operation related. He still has some reflux in the morning. We have to go easy for the first hour of what he can drink. The formula doesn't do well. He can eat Puffs and cereal first thing and doesn't bother him. So we are continuing to take it easy this week and keep things low key. The most exciting thing I'm doing is laundry.

We are home

We are home, Kids are in bed. Parents are going to crash now.

Still at DHMC

We are still here for a combination of things. Mainly because I believe the emergency room is very busy. DaRT has flown in 4 times today and just left for the 5th time. Usually not a good sign. His doctors just have been busy.

As for Tyler. He had a really good night. He had a really good early morning. Around 10am I started to notice him slowing down and getting very grumpy. Then, he was eating raisins and I thought one got caught in his throat. It resulted in a clean up. His neurosurgeon came in and said he looks good from a neurological point, let's just see how lunch goes. Well, Tyler didn't get to lunch. He's been begging for milk and water. We've been giving it to him. Shortly there after, he needed a bath and new bedding. Once we got him cleaned up, we noticed how hot he was. He's running a 100 degree temp. So we are waiting to see what happens next. I believe he has the bug his sister is also currently fighting. (It sounds like she's doing ok as long as the Motrin and Tylenol keeps coming.) The fact every hour he asks for milk, water, or a bagel in my mind is good. The past few weeks when he has bad days with vomiting, he wants nothing to do with food.

So Ben and I are trying to make the best of sitting on the Guantanamo Bay Furniture line with our 24 pound .

The resident just came in, maybe we will know something soon.

We are going to owe PICU a new rug.

Tyler has eaten dinner. Apple sauce, orange Jello, and playing with carrots. Then back to the wagon. He spent 2 hours just being pulled around happy as a clam nestled in some pillows (he was a little wobbly this afternoon). He's feed baby, played with the truck, read some books, and basically has eaten all afternoon in this wagon. Now he's pulling the wagon with all the above mentioned around the unit himself pitching a royal fit if we try to help him. And when the he's frustrated he runs to the door screaming "Out, Car, Bye-Bye". Just in case you are wondering which door, it's the one out of the unit itself.

His surgeon just came up and is amazed at how wonderful he looks. He's met all the discharge requirements save the last 2 doses of antibiotics he needs. So with any luck in the morning we can open that door for him. We are just letting him run around the unit to wear himself out so hopefully bedtime will be easy for him. We've got about another hour to hour and 1/2 to go.

Oh, the flirt has been turned on. He is a little cautious, but if he deems someone safe, it's all flirt.

He's up

Tyler is awake and asking for a wagon. Up next flirt-mode.

Resting..

Tyler has been awake, grumpy, and now back asleep on mom's shoulder. We could hear the cries of "Mommy Mommy" across the PICU when we came up to find him. So far he seems pretty in character for him. The Tylenol seems to be working so hopefully he'll have a nice nap.

Just spoke to the surgeon.

Just had a smiley meet with the surgeon. Tyler is doing great. The resident is finishing the dressing and in about 20 mins we should be able to see him.

The quick culture test came back negative. So it was a straight shunt revision. They moved the location of the shunt to a right front top location. So the cathider and and the valve were replaced despite seeing no malfunction when they moved the shunt location. They patched the old hole up with hopes that his body will naturally fill in with bone. Hopefully this will be the last of his shunt bump.

"Bye Bye, Night Night"

There is little question in either of our minds that Tyler knows exactly what's going on. He has not even asked for food or water all morning. He couldn't have any if he had. He is on high alert for needles and nurses. And when Sharron wheeled him out to the OR he said "Bye Bye, Night Night" to me. He may not know the details, but he knows what's coming.

Scheduling in advance has a few advantages. They will put him out with gas before putting in the IV. And they give us a pager-coaster like you get at Chili's when there is a long wait.

Sharron said he gave the requisite fight to the anesthesia and is off to sleep.

And now we wait... (we expect to hear something about 9:45 ET)

ugh! 0300

Up at 3 AM this morning, at DHMC by 6. This is a new experience for us, checking in at the desk for surgery. We usually get admitted direct from the Emergency Room. We are all checked in waiting for the nurse to call us to pre-op.

At the moment Tyler is snoozing on mom's shoulder.

More to come soon.

Trying out something new.

I'm sorry if this is short, but I need to finish getting things together and get some sleep.

Long story short, the MRI today showed Tyler's ventricles are not back to his baseline. Really they are just as big as they were 2 weeks ago when we had the last MRI. His head has also grown a full centimeter and the fontanel that was almost closed is rather big again. Tyler also has a bump underneath the incision that keeps getting bigger and is not soft and squishy anymore. In short his head is bigger than anyone one likes it to be. Add to this, he's still having bad days where he won't eat or drink and like today vomits inexplicably.

So for the new part. Instead of rushing him down to the emergency room to be admitted and on a pending list for unscheduled surgery, we went home tonight to pack a bag. Tomorrow at 4am we start a leisurely trip up to Lebanon for a 630am check in at a desk. WOW. I had to ask were this desk was. He will be in surgery around 730am.

The first thing they will do after he's asleep is tap the bump and get a quick culture. While the culture is doing it's thing they will finish prepping him. Once they get the quick culture back (about 30 mins, which is about the time it takes to clean his head properly for surgery) they will decide what needs to be done. If the culture is negative he gets a new shunt installed in a different place and the old hole will be packed shut so the bone can heal over. This option will get us home Saturday. If the culture is positive then they have to take all parts of the shunt out, install an external drain, and hit him with large doses of antibiotics. If it goes this way he'll be in the hospital a while.

We will update through out tomorrow. Once we know what is happening we will also give a better explanation as to what has been done. If this wasn't enough today, Rachel has a 103 degree temp and looks like she feels rotten despite her reassurances from the couch she is ok. But she is happy with her dog Zoey at Grandma and Grandpa's. It's funny, she told Grandma that Tyler would be in the hospital for a couple of days this morning before we knew it. Hmmmm.

Thought you'd like a few pictures.

Tyler has been having some good days and some not so good days. Here are a few pix from the last couple of good days. And really the bad days are nothing more than a grumpy child who isn't eating or sleeping well. We think he's uncomfortable from the bump on the back of his head. He'll often rub the bump while saying "Ouwie". GI was pleasantly surprise that he weighed the same this week as the he did 6 weeks ago despite everything that has happened to him in the month of April. We will see her again in 4 weeks and hope that he's gained a little weight. We go back to Lebanon on Thursday for a follow-up MRI and appointment with neurosurgery. We have a lot of questions. Maybe some can be answered.

No Answers but home.

The MRI at least showed his ventricles have gotten smaller over the last 2 and 1/2 weeks. Other than that, we don't have anymore information on why Tyler isn't eating or sleeping well. So we wait and watch some more. This is why it's called Complex Post-Hemorrhagic Hydrocephalus. On the bright side, we made it through the snow without any problems.

Moment to moment

I would love to say that everything has turned out fine from the last shunt revision. In many ways things are fine. He's for the most part happy and running around talking up a storm. There isn't a playground he won't climb all over and give me mini heart attacks near the open areas. We are hearing another explosion in his communication skills. He's requesting things and using 2 to 3 word phrases now. But he get sleepy too often and isn't sleeping well at night. His eating and drinking has dramatically slowed down over the 2 or so days. And that annoying eye is more turned out today.

I called Neurosurgery today. After a few phone conversations we decided that he doesn't need to be rushed up to ED tonight. We are to stop giving him food and milk at midnight. At 6am he can have some apple juice before we hit the road for the Emerald City. At 830 we take another ride in the MRI machine. Then around 10am we will meet with his surgeon to discuss what the MRI shows. After that I really can't say what will happen. My "mommy gut" says we will be admitted. I can't tell if it's to treat an infection to which we don't have a fever or to revise the shunt. I will do my best to shoot off an email when I can to let everyone know. I'm packing a 2 night bag just in case. The kicker is Ben leaves for Ireland on Saturday. That will show me for being a playful jealous wench because I couldn't go.

The last picture is hard to look at. It's a picture of the bump under the incision filled with fluid. It sticks about 1 + off the back of his head. These were all just taken.

Home Again

We got home about 9pm last night. We needed to stay at get more IV antibiotics from 4 to 5 pm so we couldn't leave earlier. Everyone seemed to have a peaceful sleep and Tyler and I are the only ones up so far. He's in a great mood running around playing and eating. He's had bottle, cereal, and a waffle so far. He's also being T and climbing chairs, standing on kiddie chairs, and pulling everything off the shelves. It's good to be home.

Sleeping

Tyler came out of the procedure just fine. Angry, but fine. They did over sew the sutures and glued the crap out of them and even stitched the area that they pulled fluid out of his bump. He needed a few hits of fentanal to help calm him down as he was coming out of anesthesia. It took a lot of well place holding to keep him from hitting the floor, he was struggling so much. But not long after he finally woke up enough to open his eyes and eat some Jello. Right now he's napping comfortably. We are in the middle of figuring out his IV antibiotic schedule. The procedure interrupted the first of the 2 + hours drips. We may be finished with the antibiotics around 6 or 7 tonight. I believe they are going to discharge us, but I'm currently waiting to see neurosurgery about it.

In for touch up on the stitches

I just deposited a sleeping boy onto the OR table. Neurosurgery is going to over sew the stitches and clean him up. The quick stain is negative. We won't know about the grown cultures for another 9 or so days. Sounds like we will be headed home soon and just watch at home for any sign of infection or fevers. More to come. Rachel is doing well for her first time in the middle of this.

All is quiet.

Tyler is sleeping comfortable and soundly. Let's start off by saying Tyler isn't showing any signs of an infection. He's happily eating/drinking and very active. No fever or any signs of pain. We just needed to figure out why the hair around his incision gets damp and crusty.

He was admitted into pedi, partial by my request. There are toys and a larger area to walk in pedi than in PICU. With him so active and happy, well let's just say this is the better choice at the moment. Neurosurgery tapped his shunt bump to pull some fluid out. It's being cultured at the moment. We are all hoping for negative. As a precaution they have Tyler on 3 different antibiotics. He hasn't had this much "gun" since he was septic back in the ICN. Because we are talking about a possible infection to the brain they are hitting him with everything to play it safe. He's be on the IV now for about 2 hours and he'll need another 20 mins or so before the his first multi dose is done. But he's not on extra fluids and he's sleeping free of a monitor tonight. He'll have checks done and midnight and at 4am. I'll give him a bottle at 4am because he will be NPO at 5am.

If the culture comes back negative, not having food will be merely an inconvenience. We will be able to finish the antibiotic and maybe need to have a stitch or two put in to hedge against farther leakage. We will be able to go home after the course of antibiotics are done. If the culture is positive, we will be here for a while. That means there is an infection in the fluid around his brain. They will rush him to surgery tomorrow and take out the shunt and install an external drain. The shunt will harbor any infection no matter how long he's on antibiotics. He'll be on the big guns for close to 2 weeks with the external drain. After they decide he's infection clear, he'll go back to the OR to get another shunt. It could be over 3 weeks before we can come home if that culture is positive. So everyone say a prayer, thought, or dance please.

Back in the ED.

The hair around Tyler's incision was crusty this morning. We're in Lebanon right now waiting for admission. This time we're trying a different approach, we've taken Rachel along. She was rather cross with us for leaving her last time. So far she is doing rather well. We'll see how it goes.

Overall the goal is to make sure he does not have an infection.

More as we get it.

Week after surgery

Well it's been a long trying week. The best part is Tyler is doing great! He was fully recovered from the ordeal by Monday. (First pix here is Monday running around the yard) It's been so heart warming to see him eat and drink like a normal 2 year old (yeah, we are a month away from his 2 year birthday). I swear he's gained at least half if not more of the weight he's lost over the last couple of months. He feels heavy and solid again and I can't see his ribs quite as well now. He lost about 1.75 pounds since February. Tyler is also keeping us on our toes. Running around climbing EVERYTHING! He's refusing to sit in his booster seat with straps now. We can not get him in it since we've come home. If we force the issue he refuses to eat and sits there screaming and trying to get out. So he now sits at the table like a big boy eating at a giant's house. His little chin barely clears the top of the table. But, he's happy and is eating rather well. He's fallen a couple times off the chair trying to get down, but most of the time he asks for help now. The other big change is napping, or the lack there of on some days. He's starting to not nap on days that there isn't a whole lot going on. If he does nap, it's later in the afternoon and he is grumpy when he gets up now. I am lucky that it is past the 18 month mark, (Rachel gave up naps at 18 months) but I would have like a non cold turkey way. There are few of the nuances that drastically changed after the new shunt was installed. Like the two previous surgeries, this one also has it's share of learning new patterns and schedules of Tyler. His personality is quite intact. These changes are not personality changes so much as to routine changes.

Rachel is taking this in stride but also letting us know she isn't thrilled with what happened. She was at school Friday morning. She came home to having a bag packed and being told "You are going to stay with grandma/pa for a day or two. Tyler needs to go to the hospital". When we came to pick her up, she rightly so gave us the cold shoulder. This past week she's been moody. I truly hope she can understand some of this and that we would do the same for her (let's hope we don't need to ever).

Over the last day or so, I've noticed the hair surrounding the incision site to be crusty. Like you've got applesauce in your hair type of crusty. Behind the incision, there is Tyler's normal post surgery build up of fluid making a rather large bump, his shunt bump. One of the concerns is that crusty hair is due to a leaking incision. The trick is, we can't tell if it's normal wound seepage or if it's spinal fluid. We've been talking with neurosurgery all afternoon about it, trying to determine if it's a constant leak or sporadic leak. We left it tonight with seeing what happens over night. He has no fever, no loss of appetite, and is sleeping so infection hasn't set in. If there is some fluid in the morning, we will be heading to Lebanon to rule out spinal cord fluid. If it is spinal cord fluid, they will mostly likely have to put in another couple of stitches and another round of antibiotics. Most likely an over night because the meds would be IV. The warm fuzzy part of all this is, the surgeon is confident enough in our abilities of knowing Tyler and having a clue about what to look for, we don't have to rush up there tonight. So fingers crossed that his head stops leaking.

How to tell when Tyler is ready to go home.

Before: Clingy, lethargic, grumpy.

After: Smiling, walking, giggling, flirting.

We are home!

Discharge order has been logged.

The ball is now officially rolling. Need the IV pulled and some paperwork finished and we're on the way home!

Kiss Me, Hug Me!

Tyler and I have been cuddling for a while now. He keeps asking with his words for hugs and kisses. If I don't kiss him fast enough, I get banged in the mouth with his head. Such a sweet boy. He's also eating puffs hand over fist and is on his second thingy of OJ. He hasn't tried to get down to walk yet, but that is ok. He's still a little wobbly anyhow. He is talking up a storm though. Making up for lost time this week. Ben asked "Where's Tyler" and Tyler with the biggest smile on his face slapped himself on top of the head saying "Here". Tyler also has a blood pressure cuff on his leg and keeps saying "leg off please!" Love it.

Let the nurse flirting begin!

'nuff said!

Hopefully the video works.