Tuesday, October 28, 2008

A date with reality

William and I spent today at UNC. A few weeks ago, I realized that we had an appointment with Will's cerebral palsy clinic and his nephrologist on the same day. So when we determined that Will needed a new set of ankle braces (DAFOs), I scheduled it for the same day as the other two appointments.

Maybe that was a mistake.

Will decided not to sleep more than 2 hours at a time last night! Anticipation? No, that was me. He got himself so worked up at one point that he actually vomited, which you know for us could potentially mean a shunt malfunction! Argh! So I kept a vigilant watch on my little son for about an hour and a half afterwards, while he slept peacefully. At least I had Otis' snores to help keep me awake. Around 4am, I gave up and started Will's day. Thankfully he never got sick again and was fine all day today.

We took Will's Kid Kart with us to UNC today, so he could sit up and look around as we walked. It was a blustery day (not just by NC standards either!) and he really seems to enjoy the breeze in his face. I bundled him up tight and off we went.

Our first appointment was with the physical therapist who fits the DAFOs. This isn't a painful process, but one that Will definitely doesn't enjoy because they wrap his feet in cast material and hold them how they want them. This is a very different position from how Will wants them. Will tends to "pronate" his feet, which means that he pushes them out and down when he's excited or stressed or just trying to move in general. The DAFOs hold his feet is a more neutral position, which prohibits him from pronating. Will fought very hard during this time, and in the end, they had to cast his right foot twice. Sigh. Late for our second appointment.

Our second appointment of the day was with Will's nephrologist. We had to walk from the main UNC hospital to the ambulatory care center for the appointment, and because we were running late, I practically jogged us over there. Its been a long time since I have jogged... grin.

Will has had moderately high blood pressure since about 2 months of age. They think that his brain bleed damaged the part of his brain that regulates blood pressure. His dosage of medicine hasn't changed since he weighed 5 lbs (which we were happy about) because it meant that he might out-grow the medicine. But over the past couple of appointments, his BP has been stepping higher and higher, and today his dosage was increased.

While we were at the nephrologist, they put a urine collection bag on Will because he isn't quite old enough to pee in a cup yet. When we got in the exam room, Will was so excited to be out of the Kid Kart and lying on the paper-covered table that he started wiggling all over the place (see photos). He also loosened that collection bag to the point that when I sat him up on my lap later, he peed all over my leg. We had a good laugh together while I aired out our clothes.

The nephrologist was concerned, also, that Will's testicles appear to be undescended. So we're going to the urologist in the next couple of weeks to get an ultrasound and see what is going on. Hopefully it will be nothing requiring surgery! We've really had enough surgery for a while. Additionally, Will will be having a renal ultrasound and echo-cardiogram before his next nephrology appointment, to make sure that his high blood pressure isn't having any negative effects on his kidneys or heart. Can we be done now?

Our next appointment was with the cerebral palsy clinic. We love the doctor - he always wants to make sure that Nate and I are going on dates. Cute. But the first thing that we realize when we get there is that Will hasn't gained any weight since the last time we saw him 6 months ago. He's gotten very long but stayed right around 20 lbs. So because it has been this long, he tells me that Will is officially "failing to thrive" and it is something to be concerned about. It sure does sound bad.

So in order to avoid them giving Will a surgical feeding tube (a gastric tube), we really have to work on getting more calories into Will every day. In addition to what we've been doing with the feeding therapist, we're going to be seeing a nutritionist and also starting Will on Pediasure instead of formula for his nutritional needs. Hopefully insurance will cover the stuff, because it costs like $2 a bottle and he goes through about 90 bottles in a month's time!! But that is a fight for another day.

Other than the failure to thrive, we had a great appointment with the CP clinic. They're happy that Will's head and neck control are increasing and that he's being so active and attentive.

Thankfully after the CP appointment, we were done for the day. We got home and played with Luke and Oma and Daddy, and listened to two messages on the answering machine, both to schedule some of the other "-ologist" appointments that we learned we needed today. Deep breath.

On a funny note, we've been fighting Will to drink his Enfamil formula each day for a couple of months now. I picked up some Pediasure this evening (when I was getting my prescription for my antibiotic for my scratched cornea...) and we mixed it half and half with Will's last two feeds tonight...

He housed both bottles in record time!

Monday, October 20, 2008

The drama of pear

Who knew that eating something new could trigger emotions to change so quickly in our house over the weekend? In working with Will's speech therapist (who focuses on feeding), we have learned that we need to thicken Will's food regularly with cereal to help with weight gain and will soon be starting to add small chunks of food to his normal Stage 2 Gerber variety.

For those who don't know, Will has cerebral palsy. He has low muscle tone most of the time, which affects all of the muscles in his body, even the muscles in his face and mouth. So the coordination that it takes to chew and swallow is a big challenge for him, and is one of the two reasons that we started working with a speech therapist (the other is that Will is skinny and really has a hard time putting on weight).

Soooo... I thought it would be a good idea to give Will little teeny tiny pieces of pear. Seriously tiny, like no larger than the letter 'H.' Just to see what he'd do with it. He likes pear when it is pureed. But... the solid pieces were not such a popular idea, Mom. See photographic evidence.

The good thing is that he didn't choke! What he did do was push that teeny tiny piece of pear around in his mouth until it practically disintegrated and then pushed it out of his mouth entirely. But I was right there to push if back in. All in all, Will finished about 8 teeny tiny piece of pear, which we consider a huge SUCCESS!

Thursday, October 9, 2008

Getting back to it

Things are slowly returning to normal at the Slavik house. Thank goodness! Luke and Will were seen at the UNC Neurosurgery clinic this afternoon, and were both given a clean bill of health. Will doesn't need to be seen for a year (unless he appears to be having a shunt malfunction). Luke will be back there in about a week to have his shunt stitches taken out.

Will is quickly getting used to his new Kid Kart. He spends about an hour a day in it right now - he is supposed to get up to a couple of hours per day in the seat. We're still working on finding him good toys to play with while sitting in the Kart. You can see him in a photo at left with my latest eBay purchase - a 1995 vintage See n Say where all he has to do is tap the Old MacDonald animal from any direction and an animal noise sounds. He loves it! We took him to the neurosurgery appointment today in the stroller attachment to the Kart, which was a very new, very cool experience for him. Due to his limited head and neck control, he typically lies down when in the stroller. Because of the Kid Kart, he's now able to sit up and look around. It is really a great thing for him.

Luke has lost most all of his hospital "weight" - he was so full of IV fluid when we left the hospital that he felt like he put on about 5 pounds during his stay there. Over the course of the past couple nights, he has wet through a number of diapers and onesies! He's back to his antics - see photo at left of him in the kitchen this evening. He is talking a lot right now, coming up with new and interesting things to say to us.

Nate and I still aren't caught up on sleep from our weeks of deprivation, but what parent is? It seems as though Will got very used to cuddling with Oma or whatever parent was home at night during Luke's trips to the hospital and now he doesn't like sleeping in his own bed. We're looking forward to Grammy and Papa's visit this weekend... maybe they'll take the night shift ::wink, wink::

Tuesday, October 7, 2008

Back at home

Luke was released today and is doing well at home. We had a restless night between nurse and doctors checking in on us, Luke's pulse-ox monitor continually going off, and Luke's general discomfort. But I think he's happy to be home. He looks like he went 12 rounds with Sugar Ray Leonard because of the swelling around the new shunt and because he slept on the left side of his face all night. But he's eating well and sleeping comfortably!

Monday, October 6, 2008

Sometimes we feel like we live here...

Its October in North Carolina... the sun is out and the temperatures are in the 70s. We wouldn't really know it from our perch on the seventh floor of the UNC Children's Hospital. Its been a rough couple of weeks for us but we're hopeful things will be looking up soon!

Over Labor Day weekend, little William started getting very sick. Upon admission into the ER at UNC, we determined that the distal end to his shunt (that is the end that goes from his skull to his belly) was blocked and required surgery to correct. Will did wonderful post-op, and we were allowed to return home after 24 hours to complete his recovery.

Just three weeks after his little brother's trip to the ER (after Will's stitches came out and his triumphant return to the bathtub - see photo at left), Luke decided to start throwing up too. Because both boys have VP shunts, we can't assume that vomiting and lethargy are "a bug" and changes in appetite are "just babies being babies." Vomiting and lethargy are key indicators that the shunt is malfunctioning, so we have to go to the hospital and have x-rays and CT scans.

So there we were, three weeks later in the pediatric ER again. They do all the necessary tests, and feel as though Luke's vomiting is caused by... a bug! They send us home with strict dietary restrictions. Only two days later, Luke is doing worse. He was actually awake only 2 hours out of a 24 hour period. Back to the ER on September 25th.

They took Luke into surgery pretty quickly, and in the end, had to replace his proximal catheter, which is the part that runs from the inside of his brain to the outside of his skull. More dangerous than Will's surgery. But he, too, recovered like a champ. The return to his personality was almost instantaneous, thank goodness. We missed our funny little guy! The neurosurgeon saved a lock of his hair for us (yay scrapbooks!), as this was Luke's first "haircut."

Will has been doing wonderfully since his shunt revision. His appetite has picked up incredibly, he is *thankfully* sleeping better through the night, and even his physical and visual therapists have noticed a positive change in his attitude and level of motivation. Will got his Kid Kart recently (see playtime with Grandpa at left), which is a positioning seat that allows him to interact well with the family, and be properly supported through his neck and trunk. He continues to see physical therapy and visual therapy weekly, and has speech therapy twice per week. He has been doing so well and we are so proud of him!

September 27 was our 5th anniversary. We had planned to get out of town, but plans change! We went to a lovely dinner in Raleigh. Thanks to Oma for babysitting!

The following Monday, we noticed that the area around Luke's surgical incision was filling with fluid. This is a dangerous situation, as the fluid was either cerebral spinal fluid or blood. The neurosurgery resident advised us to come back to the pediatric ER. They did more x-rays and CT scans. Then they wrapped Luke's head in gauze. He had what is called a "pseudomeningocele" - a benign fluid filled space that heals itself. Say that three times fast. After no sleep and a full can of Red Bull. They kept us for observation for 24 hours, and Luke passed with flying colors. Home we went. Surprisingly, Luke didn't mind the wrap on his head. He got funny nicknames like "Q-tip" and "mushroom-top." See photographic blackmail material at left. We even went to the pumpkin patch with Grandpa and Grandmama.

But little Luke, he wasn't quite done with just one surgery. Yesterday, he vomited again after acting pretty cranky and lethargic. Back again to UNC. Back to the radiologic center to get the x-rays and CT scans that we could do ourselves. Back to the operating room. This time, Luke had to have his distal catheter revised. This is the same surgery that little brother had a month ago.

He is doing well post-op - just a little groggy and irritated at all the tubes and wires (see photo with Daddy at left). We'll be at UNC for at least the next 24 hours while they make sure he's doing ok. Will is loving being an only child at home with Oma (and Otis!).

To answer your question, is this normal? Here is the answer that we have... The average shunt lasts for 8 years however when a child is growing, they are more likely to have shunt complications. The boys had their shunts placed in April 2007, so this is about 18 months. Its just unfortunate. We're ready to go home and stay home for a while! Thanks for checking in on us! We're going to try to update this a little more regularly than we had been with the CarePage.