They must have changed the child labor laws...

We got a letter from the insurance company on Saturday asking if they first surgery (popping the cyst) could in any way considered a work-related injury. Let that sink in for a second. DOB: May 23 2008, Date of admission Aug 27 2008. Can someone please name a job that Tyler could do at 4 months old?!?!? I know some investment banking positions are now opening up but yikes!

Overall things are going well. Tyler is looking great. His feedings have fluctuated some but I think that is related to the cold that our whole house is dealing with. His head looks great, about the same as when we left Dartmouth. The incisions are healing well. When he is awake and alert he's a whole new baby!

Ouchy

Tyler's stomach sutures are looking angry and red today. He is also irritable. This won him a long trip to the pediatrician. He's now on antibiotics with warm compresses to help get rid of the infection. We are all hoping the infection is just skin deep and not into his hardware
.
Otherwise he doing great. He's eating more than he did pre surgery per day. At this rate I expect him to be bigger than Rachel next month. He's over 10 pounds despite not eating for a day because of surgery. He spent much of the morning awake and looking around. He isn't sleeping as much during the day. Thankfully he is sleeping well at night and only waking to eat around 2 and 6 am. His right eye is tracking much better now and doesn't look like a lazy eye now. Other than painful tummy sutures, he seems to be a very happy baby.

This is a picture of both Rachel and Tyler before surgery. It took 2 months for her to want to hold her baby brother. She has become very attached to him now. I think she was more upset not seeing Tyler than being left by her parents. She is very concerned about his ouchy on his head and when he cries. She usually get right in his crying face saying "baby crying" or "baby hungry".

This is Tyler right after surgery in the hospital. We love the hat they put on him. It reminds us of the movie "The Christmas Story" where Ralphy has to wear the bunny pajamas. He needed to wear this until Monday night. It kept the bandage on his head and pushed the skin that was used to bulging out back onto his head. Most of his bump is gone now. What is left is were the valve and tube stick out of his skull and the tube snaking down ti his neck. His body and hair will grow around most of that.

Sh$t happened!

We're home. Last night a 7PM Tyler let loose. He took out 3 diapers before he was done. The nurse took one look and handed me a discharge summary, our ticket home. We finally got home at about 10:30 and to bed by 12:00. It is amazing how much better you sleep on an device that is designed to be slept on :-).

Tyler is looking good. I gave him his 4 and 8 am bottles and he sucked both down like a pro.

Waiting for Poop

Well Tyler is doing so well we just heard we can go home after some good poop. He is bright, alert, and awake quite often. As of 11 am he's eaten about 350 cc of milk in a 12 hour period. He's on track to eat over 700 cc today, slightly more than he did before surgery. His pain seems to be very mild, mainly when we move him around. He hasn't had morphine since yesterday afternoon and only a few doses of Tylenol.

The parents are doing ok as well. We are very tired for not having any sleep Thursday or Friday night. We did get a few hours last night. It was a big help to finally see our normal Tyler last night. We were very reassured and relieved.

No one knows what to really think about his behavior post-op. He hasn't exhibited the tremors since then and is acting his normal self now. No one can say he won't do that again, but they can't explain why he did it in the first place.

Sawed-off stepper motor.

Tyler's new shunt has a fancy valve. It prevents the flow of fluid below a set pressure level. Too much pressure is bad, too little is almost worse. If we were to let all the fluid out of Tyler's ventricles at once the ventricle wall would tear away from the brain and cause bleeding. There is also a link between inter-cranial pressure and skull-growth. Too little pressure and the skull won't grow properly.

Tyler's shunt is programmable. Doctors can adjust the pressure setting without surgery. So as he grows we are less likely to need to go in surgically to adjust the flow of fluid. One down-side of this value is that it is more likely to clog and require surgery to fix. We described how a shunt works here.

This is the device used to program the valve. The system is pretty ingenious. It works just like a stepper-motor cut in half. Most motors just spin when you apply power, stepper-motors only turn one "step" every time you send power to it. You'll find a stepper motor anywhere that exact control of speed or position is required. Printers, scanners, disk-drives, and robots all use steppers. All motors have 2 main parts the rotor and the stator. The rotor is the bit the turns doing the work and the stator is the stationary part. Usually the rotor fits inside the stator. In this case the rotor is now inside Tyler's head, the stator is in the programmer. The rotor has a series of alternating magnets on it. By alternating the magnetic field around it we can turn it in a very precise way.
The Arrow is the valve in the shunt and the 4 magnets outside make up the programming device.
One thing we now need to be careful of with Tyler is magnetic fields. Some studies have shown that a refrigerator magnet can lower the setting (just as bad as raising it). Some rumors I've seen indicate that some cell-phones, old-school telephones, microwaves, speakers etc can change the setting. This may get interesting.

Welcome back Tyler.

About an hour ago I was feeding Tyler. When we started he was a Tyler shaped person with a distant gaze and some faint Tyler-ish mannerisms. By the time he had finished sucking down about 80 cc (3 Oz) the baby in my arms was Tyler! His inquisitive eyes are back. He will again reach for hands and fingers, lift his head and look around when I burp him and will even smile for familiar faces. Most of his un-Tyler-ish-ness was attributed to the Morphine, residual anesthetic and being rather uncomfratable from surgery, but I think we both had a lurking fear that there was something more going on in that head of his. Tonight those fear are starting to ease away.

Tonight Sharron and I took turns visiting the ICN. I ran into one of Tyler's Primary nurses, his favoriate respiatory therapist and the nurse practitioner who came to pick him up in the helecopter on day one. It was nice to visit with familiar faces.

Finally Resting

It's been about an hour and half and Tyler is finally resting comfortably. He isn't whining or restless and he's been able to sleep without being poked, pricked, or prodded. Poor thing. He pooped earlier and they decreased his sodium intake. That has seemed take some of irritability away.

We have just gone for showers at David's House and working on going out to grab a bite to eat. We just had a consult with the Pediatric resident. Tyler was looking rather vacant. We decided that it is most likely a side-effect of the Morphine. He is also starting to eat more, just polished off a 50cc bottle(1.75 Oz). There is almost no chance of getting out of here tomorrow morning as we had planned, but if he keeps on this way we'll be talking discharge in no time.

He's slowly coming around to be more his normal self. It take a while for small babies to recover sometimes. I had to stop writing this an hour ago and since then he's eaten another 30 cc and watched me for a few minutes. He's once again laying in his crib so Ben and I are hoping to get out for an hour to eat something other than hospital food. I swear this place would be shut down if the food inspectors came for lack of edible matter.

A Very Long Night

Last night didn't quite go as smoothly as we all would have liked. Tyler came up very agitated and fussy which we expected. He just had brain surgery with a tube snaked down to his stomach. There is a whole world of hurt there. As we are watching him in that first 1/2 we noticed his eyes sun-downing and his whole body tensing up with no responses to us. We think he may have had a couple of seizures. Tyler came back form the OR to a nurse that has never worked with him before. She noticed the sun-downing but assumed that a patient coming in for a shunt would have sun-downing pre-op, Tyler did not. Ben had to go out a second time and demand that they page Neuro. Once the staff understood this to be all new things got busy here. The Neurology resident came running in, we had a rush CT scan, and a neurologist was woken up to come in and have a look. The CT scan showed good news, no new bleeding or any areas of concern. There were a few air pockets in his ventricles, but that is normal after this type of procedure. The decision was made to jack up his morphine, give him 100% oxygen (to help speed up the absorption of the air), and to give him Phenolbarbitol, an anti seizure med that also helps by taking the edge off so he can relax. I can't say he had a peaceful night, but he was kept as comfortable as we could make him. We are hopeful the seizures are a pain and post-op reaction and will go away when he feels better. Also having no nutriention for the better part of 16 hours before surgery his electrolyte levels are all out of wack. He finally took a medium size bottle this morning and gave me his hunger cries. They also are now supporting him with electrolites and sugar water to brings things back to normal. With any luck he should keep improving today. Hopefully we can keep his pain under control.

Surgery #2, Success!

Tyler is out of surgery. They anesthesia team is finishing up extubating him and he will be back in his room soon. We just spoke with the surgeon and she says he did great! It was a long trying day and we're getting ready for one really hungry little boy to come back to his room. They ended up installing a programmable shunt into the hole created for his last surgery.

We will watch him for a few weeks and adjust the pressure of the shunt valve as necessary. They have an electro-magnet that they put on his head to adjust the pressure setting on the valve.

Update: He's in his room now, looking great! He is on some O2 just while he re-joins the world of the conscious. Otherwise he's all set.

Feed me Seymore!!!!

Tyler has been NPO (No food or drink) for over 13 hours now. Not a happy camper. We just got word that Neurosurgery thinks we'll be in the OR between now(1:30 pm) and 4pm. They just gave him some Morphine to take the edge off of his hunger. We have been taking turns holding him trying to keep him calm. He's been getting IV fluids all night so there is no dehydration.

We we be three unhappy campers if he does not make it into the OR today. We are not liking the idea of torturing him all day for no reason just to do it again tomorrow.

Grr...

Waiting for Godot

Just like the play, it's frustrating. The hospital has a no vacancy sign up and people still come in with trauma's. The OR has been canceling scheduled surgeries to try to find bed spaces for all the trauma patients. So poor Tyler has had no food for 10 hours now and we still don't have a time for surgery yet. Poor guy just wants to eat. Other than that we have no new news. He is still getting a shunt.

Welcome to the PICU

We have just finished checking into the PICU up here at DHMC. The plan is to go in for a shunt tomorrow. We have no idea what time at this point. Tyler's ventricles are bigger and the cyst is the same or smaller. We were hoping to avoid permanent hardware, but this is where we are. This should allow the fluid to flow out of his head and make room for other things.

It's almost nice to go in to the ED when neurosurgery is expecting you. You get some dirty looks from the folks with minor household injuries when we walk in and get called in almost immediately. It is all for not when we end up sitting in a room for 6 hours waiting for a slot in the PICU.

After the standard formalities we are checked in. Tyler is now NPO for his "add-in" surgery slot tomorrow. We came in too late in the day for a real scheduled slot. Hopefully we will know what time when it has been assigned. Even then it is subject to change.

They have actual rooms here. There is a built-in window-seat thing that I'm going to try and sleep on and Sharron is now crashed on a cot. Tomorrow looks to be an eventful day, so I'm going to call it a night.

Get thee to a Neurosurgeon

Tyler had a regularly scheduled appointment with his Neonatology team today. Overall they think he looks great! Except for his head... Neonatology does not like the looks of his head and told Sharron to get him up to Lebanon. I'm writing this from the Emergency Department(ED). We just had another quick-brain MRI (we have lost track of how many he's had). It is so busy in here that the resident gave Tyler a look-over in the waiting room, the only other option would be to wait a few HOURS for a bed.

More to come as we get it.

Hi Ben

Ben is in California this week. I'm tired but holding up well thanks to some grandma help. Ben will be back Friday night. I thought he'd like some new pictures to look at of both Rachel and Tyler. Rachel is sporting her new "Cinderella Dress". She loves Cinderella and is going through a big dress kick. And yes she insisted on playing in the cold pond in the
60 degree air.

Tyler is doing well too. His head is still very sunken and the bump is smaller than it was last week. He gets his 2 month shots on Friday but other than that it's been a quiet week for us.

Tyler has had one of those he went to bed one size and woke up bigger moments to me. He looks huge again. He has grown out of his newborn size clothes. This week we are starting to see dimples at his elbows and a few small creases at his wrists. He isn't a chubby baby, but he is very long and has some muscle tone on him.

Take 2 on the Shrinking Head

Tyler still likes to keep us on our toes. For the last 2 weeks he's looked hydrocephalus. His fontinell was full and bulging, the sutures (bone plates) where spreading, sleeping more than I'd like, and his cries were not as forceful. Ben and I were hoping to get to the 22nd without having to take an emergency trip up again. On the 22nd he gets another ride in an MRI. From those pictures we decided if he needs another surgery. Could be a shunt or another round of hole poking in that cyst.

We woke up today with more of the same on his head. I went to work for 6 hours and came home and did a quick once over on Tyler. Oh my God, his head is sunken. The fluid is gone. His head isn't bulging or embossing anymore, the fontinell is sunken and very soft, by 6pm he's eaten close to 600cc (he normally has been taking 600cc in a 24 hour period), and very alert. The bump on the side of his head is also noticeably smaller and very squishy. I admit it, I panicked and called neurosurgery. How could that much fluid move in such short time.

Neurosurgery could not give me a good answer as to why. Since he does not have extra hardware in his head, they are not concerned that it will over drain. Most likely something clogged up the works and the fluid built behind it and the pressure finally moved it out of the way. So we keep watching him for any changes in his behavior. They must think I'm nuts up there. 2 weeks ago we rushed him up there because it filled up and now I call when it empties. I'm surprise I have any hair left.

Finally Broke Down and Bought a Freezer

This weekend we had to buy a freezer to put all the extra milk for Tyler. He still isn't nursing and I'm still pumping 8 times a day. I'm pumping about the same time he is wanting to eat so if I can get him to nurse, my supply is ready for him. I'm waiting for his cold to clear up and to see if his head fluid starts to go down. Once all this clears up one way or another, I hope we can teach him how to eat naturally. As long as we think he will have problems with his head, we need to know how much he takes in and when. Change in eating habits is a sign that the pressure is too much for him.

He is feeling much better as far as the cold is concerned. He isn't as nasally and he is able to take larger amounts at each bottle. With the cold he was having smaller more frequent meals. The fluid in his head is still increasing. We can tell by the bump on the right side of his head where the incision was and his fontinell is full again. Today his head even looks hydrocephalus, bulging head, big bump, and his forehead looks embossed again. You can see the bump on the first picture above his ear. We are mentally ready to take him in for surgery again by the end of this month. We have an appointment for a MRI and to see the surgeon on the 22nd. As long as he doesn't become symptomatic we will wait for that appointment and make a decision then. Unless the surgeon calls back tomorrow wanting to move the appointment up. I've yet to unpack the suitcase from our trip last week.

Rachel is doing well with Tyler. She is very concerned when he cries and always points out that he has an itchy on his head (she is referring to he bump) or calls it a boo boo. She is very good at coming up to him and announcing to us that "baby is sleeping" and then starts to tickle his feet.

She has decided the dog is a playmate and likes to dress the poor good dog up.