In PICU

Sorry for the delay in updates. Blogger has changed it's posting security or something and I can only post from an actual computer. I can no longer post from my phone messaging system or from my phone's email application. So....
Yesterday, we started our morning with a second opinion from Dr. Stager. He agreed with Dr. Cogen that Jack has optic nerve damage. He said that we should ask our neuroophthalmologist when we see him whether there is any possiblity of recovery of the optic nerve. He sent us over to the Retina Foundation to test Jack's vision using the Teller Acuity Cards. Some doctors disagree on the accuracy of this type of testing. We got good news. The vision in Jack's right eye falls within the normal range for his age group. Wooowooo!!!! AND he is not blind in the left eye. His vision in the left eye is something like 20/1028 (20/20 is normal). The doctor explained that this means that Jack can probably make out large objects and high contrast objects with his left eye. For example, he actually can see his big red car on the porch and he is able to see the doorways in our home. We will have to talk with Dr. Stager again about the patching. Based on our report that Jack appeared to be blind in the left eye he had said that we should discontinue patching. I think the test results will probably change his mind.
Today, Jack had his VP shunt placed. Everything went well. Dr. Price said that everything went just as she expected. BUT, of course, Jack is having difficulty breathing following the anesthesia. As usual, we put him on our home Bipap machine in the recovery room. Because of Jack's respiratory difficulties, they decided that Jack should spend the night being carefully monitored in the Pediatric Intensive Care Unit. Unfortunately, they have told us that since biomed has not approved our Bipap, they are going to put him on a different machine. We have not put him on their machine yet. We've kept his oxygen saturation up by stimulating him frequently which of course means that he is not resting well--we are not letting him get too deeply asleep. We obviously cannot do that all night. We'll have to see how it goes with their machine. Thanks for the prayers. We feel them.

We've Arrived!

Well we are here. Our plane ride in was the bumpiest ride I've ever had on a plane and I've had my fair share of plane rides including a ride in a "puddle jumper" when Dave and I went to Jamaica for our wedding.
Tomorrow morning, we will finally get that second opinion about Jack's eyes from Dr. Stager. I really want him to quantify just how well Jack can see now so we can optimize his environment. Of course, I'm hoping to hear that something can be done but, at the very least, we need to know just what he can see so we know what we are working with.
Gotta go get a little shut eye. Tomorrow is a big day.
Sent from my Palm Treo

Can't see, can drive

Jack still doesn't act like he can see with the patch on but he drives his car when he wears the patch. He has been trying to go to sleep when I put the patch on him. I've been trying to keep him active so he will at least attempt to see out of his left eye. It's cold and he's nearly blind but we are outside driving!

No Humpty Dumpty!

Jack sat on a wall but he did not fall down! We are off to Dallas soon for Jack's VP shunt. Jack has a cold so Dr. Levine (ENT) called in some Amoxicillan to keep Jack from getting a secondary bacterial infection prior to surgery. We fly out Monday, do pre-ops on Tuesday and Jack is scheduled for surgery at 1 pm Wednesday. Please continue to remember us all in your prayers.

Mommy Down

David titled today's post. Hey, why does it look like I'm wearing the hospital gown and Jack is just visiting?Because he was just visiting before they took me off to surgery. Appendicitis and appendectomy, anyone? I had surgery yesterday and the docs let me out yesterday evening since David reminded them that I have my own nurse available to me at home. It's been a lot more painful than I expected. Dr. Scofield and Dr. Woods (who were fabulous) told me that it would hurt less than my c-section so I said, "Oh great, then I should be out and about right after surgery." I really don't remember hurting this much after my c-section. I was walking a couple of blocks several times a day within 24 hours. Guess it makes a difference when you have external motivation like your baby being in the NICU.

My great friend Edie sat with me at the ER so David could take Jack home and be with him. We were really hoping that the CT scan would show us that it was not appendicitis but we did not have that kind of luck. Edie actually had to stay alot longer than expected because I had to drink some contrast and wait two hours before I could have my CT. I had to make her go home to her family after we got a diagnosis. I tried to convince the ER doctor to let me go home too since surgery wasn't planned until the morning but they wanted to put me on IV antibiotics overnight. I tried to tell her that Jack does not remember ever spending the night away from me but she just said, "Well, he's overdue." She did say it nicely, though.

David has been awesome. He has been doing everything for Jack AND me. When Jack was looking for me Sunday night as they got ready for bed, he told him "Mommy has a big owie and had to stay at the hospital." When Jack woke up Monday morning, David asked him if he wanted a drink, he shook his head and signed, "Mommy" and David told him again "Mommy has a big owie and had to stay at the hospital." David said he just laid back down and went back to sleep.

Jack has been a trooper. He is trying to be gentle (Daddy is helping him ALOT with being gentle). He got upset when he first walked into my room at the hospital but we reminded him that it was not his room and he did not have to stay but that Mommy had to stay until the doctors took care of her owie. That was enough explanation because he just wandered around and entertained himself after that. The nurses were thrilled to see him signing.

These next few pictures have nothing to do with anything. They're just cute old pictures that I thought you might enjoy.

Moving to Dallas?

I'm a bit behind on blogging so some of you may be confused about when/why we were at Dr. Fearon's office meeting Manning. After we saw Dr. Cogen and updated Dr. Fearon, we talked with Dr. Price, Jack's neurosurgeon. She was worried that Jack might currently have pressure on his head and she wanted us to get a MRI ASAP.

It's complicated so I won't go into all the details but we also ended up having another sleep study at Children's Hospital (the local one) on Tuesday night. It was the best sleep Jack ever got in his whole life and he had a cold at the time. They put him on the new BiPap AVAPS machine. It's similiar to the VPAP machine that I asked Dr. Lazono to try previously. Basically, it's the same machine, just a different brand. Anyway, it adjusts Jack's inhalation and exhalation pressures up and down during the night as he needs it. He slept deeper and for longer periods in deep sleep. His saturation level stayed above 92% the whole night. Wowweeee!!!! Go ahead and start praying about this now. Blue Cross does not yet recognize the new machine as different from our current machine so they will not pay for another machine yet. We will have to come up with the money to buy the machine and then fight with Blue Cross and hope for some reimbursement.

Since we needed the MRI and Dr. Price, our neurosurgeon, wanted to see us, we planned on getting a second opinion from Dr. Stager, our ophthalmologist in Dallas, while we were there. Plans were made quickly and by Thursday, we were on a plane to Dallas. Jack did very well with the MRI. Fortunately, at Medical City Dallas, the anesthesiologist only uses gas to sedate Jack so there were no worries over a breathing tube.

We had the MRI and then saw Dr. Fearon. Dr. Fearon was happy--the ventricles appear a bit smaller on the MRI. He measured Jack's head and noted that it was 1.5 cm larger than when he saw him in August. He wanted us to see Dr. Price and talk with her but he anticipated no surgery since Jack's head obviously did not need to be made any larger.

So we were rushing off to Dr. Stager's office and I made a courtesy call to Dr. Price's office to make sure tht she was still in surgery (the plan was to see her after her last case). I actually spoke with Dr. Price who was looking over Jack's MRI at that moment. She asked us to go ahead and come see her first because she was done for the day. Expecting a pat on the head and "get another MRI in 6 months", I called Dr. Stager's office and explained that we would be only slightly delayed. Unfortunately, Dr. Price had a lot to say and we missed Dr. Stager completely.


Dr. Price has recommended that we move to Dallas (sort of LOL). She measured Jack's head at 0.5 cm larger than her August measurement. She said that his head should not be growing at all. She said that she believes that he still has pressure on his head and although the ventricles are slightly reduced in size the third ventriculostomy is not doing the job. After consulting with Dr. Swift (the major proponent of third ventriculostomies), the plan is to place a VP shunt within the next month. Once the shunt starts draining the ventricles, Jack's brain will get smaller inside that large cranial cavity of his. Dr. Price expects subdural fluid collections to occur.

About four months after the VP shunt or when the size of the brain is reduced enough, she and Dr. Fearon will perform a cranial vault reduction so that Jack's smaller brain will not be injured by sloshing around in the large cranium.

I am so glad that we know this and I am glad that we are movng forward and preventing any further damage to Jack but I cried myself to sleep Friday night looking at my precious gift from God who has been made to go through so much during his short time on this Earth. I truly believe that God has a good plan for Jack. I just wish we could be experiencing "normal" family life for awhile.

P.S. No, we have no plans to move to Dallas just yet.

Surprise--it's Manning!

I don't know what happened to the picture and note that I tried to post yesterday. We had a nice surprise at Dr. Fearon's office. We did not know that any of our listserve friends were going to be there but we walked in and there was little Manning. He is quite a cutie and the pictures don't do him (or Jack really) justice. I did not bring my camera so I snapped these with my camera phone. Sorry that they are a bit blurry.

Too bad it was already well past Manning's nap and lunch (or was it snack?) time. We did not get to visit very long. Hope you had a nice nap and lunch Manning!

Disappointing Visit with the Eye Doctor

The good news is that Jack's cornea looks good. There are no dry spots.
The bad news is that Jack's optic nerves are very pale. He says that they have been damaged by pressure on the nerve. He was unable to tell us an exact cause of the damage but it was most likely caused by the pressure on Jack's brain before he had his subdural shunt and third ventriculostomy. After dilating Jack's eyes, Dr. Cogen stated that Jack has very poor vision in his left eye. He said that there is no nerve swelling so there is likely no acute process impacting the nerve. In other words, the damage that he sees was caused some time ago and he has no reason to believe that there is currently pressure on Jack's brain that is causing further damage. About the patching, Dr. Cogen stated that studies show that patients with moderate-severe amblyopia like Jack need patching for all but 2 hours of the day. It typically takes 2 weeks per birthday to see results-if no results are seen in 3-6 months then it is not likely to get better. Unfortunately, Jack has not only severe amblyopia but also optic nerve damage so he is highly unlikely to have improved vision from the patching. He said that what we would need to consider is whether Jack will benefit enough from the patching to compensate for the developmental losses which will occur while he has the eye patched and cannot see. He expects minimal to no gain in vision although he said that he could not be absolute. Dr. Cogen said that patching Jack's eye for 2 hours per day will most likely maintain his current vision. He said that eye muscle surgery will likely not cause Jack's eyes to begin working together because of the optic nerve damage. He stated that the eye muscle surgery would help Jack's eyes to line up correctly but not track together. We've got a call in to Dr. Fearon, our craniofacial surgeon, to discuss further evaluation.
As you can see from the picture above, Jack is just as happy as ever. He's our trooper and I think this further proves what a trooper he is. He has adapted so well to not being able to see that none of us could really tell for sure (until today) that his vision really was so bad.

Going to the Doctor

What a cutie! Ok so this picture is not from this morning but Jack is going to the doctor today. Dr. Cogen will evaluate his optic nerves for damage. We have been patching Jack's right eye 2 hours a day for a week now and while he is bolder in moving around, he still acts as if he cannot see a thing. I am anxious to hear Dr. Cogen's evaluation. Pray for us today.

Swing!

Thank you Aunt Mary!

Cold weather doesn't stop Jack. No way. Aunt Mary knitted him a great scarf and mittens so cold or not, we're going out to play. Jack's thumbs are at an odd angle so he's wearing the mittens like hand socks with the thumbs tucked in. Without the mittens and scarf from Aunt Mary, jack would have been forced to stay indoors 'cause it's too cold. Thank you, Aunt Mary.

We're free!

Jack's congestion is better and he finished all his antibiotics so Dr. Levine says that he can go back to school and hang out with children again. He still has fluid in the left ear so we will have to put another ear tube in soon.

Last Trip to the Emergency Room This Year

We had another scare. Jack seemed rooted to his little couch while wearing the patch. We could not get him to play and it really seemed like he just couldn't see. That's kind of scary but then we decided to check his pupil's reaction to light. It didn't react or if it did it was a very slight very slow reaction. I immediately thought about increased pressure on his brain. It was too late to reach Dr. Stager. We called our family doctor and he said not to worry and have someone look him over next time we happened to see a doctor. My brain went into overdrive. What if we're missing something? What if this is an early sign? I called my friend Christie who is a nurse who used to work for an eye doctor. She also has a son with Apert syndrome. She asked me if he hit his head. She was thinking just like me--it could be increased pressure. So we got Jack ready and off Jack and I went to the Eye Foundation emergency room. Fortunately, we were early and there was noone in the waiting room yet. By the time we left, it was apparent that they had their first firecracker victims sitting in the waiting room. The doctor said that his eye pressures were normal and his left eye pressure was actually lower than the right. She said that his eye pressures would have to be up for his intracranial pressure to be up. She did not look at his optic nerves because she is not used to working with children and it took three of us to hold him down for her exam which took way too long because she was not used to her patient squirming around during the exam. She assured me that she really had no reason to believe that there was any increased pressure. Best of all, she gave us the golden ticket. She told us to follow up with our ophthalmologist within one week. With her discharge paperwork, we won't have to wait two months to get an appointment with Dr. Cogen. It will be reassuring to talk to him since he has been looking at Jack's pupils since the day after he was born. Well, Happy New Year, everyone. 2008 looks like another year of motherly anxiety!!!

Patch Smith

We talked to Dr. Stager today about Jack's left eye drifting upward and he told us to patch the right eye for a couple of hours every day to preserve vision in the left eye. As you can see, Jack is so devastated that he cannot even bring himself to eat. :)

Really he is doing very well so far. He did want to touch the patch when we first put it on. I would to if it was me. Then we distracted him by starting a Baby Einstein movie and giving him a snack. We'll have to see what happens when the movie is over.

Christmas 2007

We start celebrating on Christmas Eve when we get together with our Smith family members. Jack and Mommy continued the tradition of wearing pajamas to the Christmas Eve party. We get together after 8 pm on Christmas Eve so Jack and Mommy want to be ready to get right into bed when we get home.This year, it was a very small gathering. There were only 4 children at the party. Don't they look great together?
Daddy refuses to wear pajamas but Jack took a picture with him anyway.
The other kids really enjoyed unwrapping all their Christmas presents. Jack lounged back on Mommy and ate a dairy free chocolate chip cookie while Mommy unwrapped his presents for him.

McCahill did a great job handing out the presents to all the little kids this year. Of course, he got a few things, too!
Two little princesses!!!
On Christmas morning, Jack took a little bit of time going over each item.
He really seemed to like the ball pit/bouncer.
He loved spinning the wheels on his new skuut walking bike.
We got him to stand up and bounce a little bit in the ball pit/bouncer castle.
Christmas afternoon found us celebrating over at Nana's. All children and adults 16 and older play Dirty Santa. Here is everybody with their loot after the game.
The younger folks hung out and watched a movie while their elders played "Dirty Santa."
What?!!? Nana's house is really warm anyway and it really heats up with so many people in it!
Back home after the party, we spent a little more time in the ball pit/bouncer castle


and took one last ride on the bike. Jack will have to grow a couple more inches before he is really able to ride but he enjoyed having us push him.
We hope all of you had a Merry Christmas, too!

Gingerbread House

Our sweet across the street neighbor planned a gingerbread house-making party for alot of little kids. Unfortunately, Jack had to miss the first party because he had a fever. Sweet Lori planned a second party but then we got our "NO KIDS for 3 weeks" order from the ENT. Lori was kind enough to start off Jack's house and she gave us all the supplies to decorate the house. [Super Sweet Lori even made modifications to the Gingerbread house and decorations to make it dairy free.] I had this image of Jack cheerfully dunking froot loops in icing and letting me help him put them on the house.

Before we started our project, I made sure that Jack had had a snack. Apparently, his snack was not big enough. So Jack ate some dried fruit and Teddy Grahams and sort of watched me while I decorated the house.
The Teddy Grahams became part of the house, too. We decided it would be a Teddy Graham House.
Oh, Mommy, what a pretty house you decorated. Let me just touch it right here.
Oh no! What happened to the Teddy and now there appear to be some Froot Loops missing. What could have happened? Uh, what icing on my mouth?

Baking Cookies!!!

So this is not so much about baking cookies as eating them and then getting cleaned up. BUT I planned to have pictures of Jack helping me to stir the cookie dough or at least hold the bowl. He was not very interested. He actually did stick his hand in the dough (his hand was clean) but since it was not a texture he likes, he immediately pulled his hand back out. If you've got tips on making helping with baking fun for toddlers, I'm all ears.

Anyway, at first he seemed almost uninterested in eating the dairy free chocolate chip cookies. Look at this picture--it's almost as if he is just humoring me. But then he realized he was out of cookie.How could I resist? One more--he needs the calories, right?
Cookie face heads for the tub.
This shot was too cute to not include it!

What's cuter?

What's cuter than a baby stuffing his face? I say, Nothin, nothin at all.

Happy December

Hi, everyone. It's been a while since I've updated the blog. Jack was invited to have breakfast with Santa again this year. Before Santa arrived, he got to meet the Build a Bear (is his name Jeffrey or something?).
Next, Santa got to get his picture taken with Jack. We think these pictures perfectly capture the harried environment of pictures with Santa. Look at the look on his face! It's like he's saying, "What? Who?"

Jack does not really enjoy the whole face painting scene so he got a red rudolph nose and a snowflake quickly painted on his hand. He did, however, love the carousel.

Jack has not been to school since the first week of December. Our ENT has decided that he wants us to keep Jack away from all children and any large gatherings for the next three weeks to once and for all get ready of this pesky chronic sinus and ear infection. Since Jack can't be around other kids, Mommy has been subbing in as a kid. Here we are playing bumper cars.
Finally, who else could look so cute not feeling too hot and getting his ear drops?
Jack seems to be feeling fine and our ENT did give us the okay to get together with our families for Christmas. Sorry for all of those that we missed at the various Christmas parties that we did not attend. We love you and we know you want Jack to get well. We are hoping for a healthier new year!

Oh I can't believe I almost forgot to tell you all the new stuff he is doing. He is now pushing his glasses back up himself when they fall down. He is signing two-three word sentences. He seems to be experiencing a sign explosion too. It's just amazing all the signs that he knows. Hmm...I know there is more that I've not told you but it will have to wait for another day.