Thursday, March 26, 2009

Catch and release

After two nights and two days at UNC, we don't know the cause of Will's vomiting spells over the past month. It was probably the worst hospitalization that we have ever had, even though this one didn't culminate in surgery and most of the others have! We are all thrilled to be home. For a night. 'Till we up and move tomorrow...

As I posted the other day, we were in the ER for a while and they did all the typical radiologic tests. Then they did a lumbar puncture (spinal tap) to test his shunt. Will was a rock star through his lumbar puncture. I stayed in the room and held his hand. They numbed the area, then they gave him Versed to make him a little loopy. I didn't know how it would affect Will, but MAN do I wish I had a video camera with me that day. Within seconds of getting the medicine, he started chuckling like Butthead from MTV's Beavis and Butthead. I am not lying. He was hilarious. And he didn't mind being held in a little ball so they could access his spine, and his face showed absolutely no signs that he could feel the procedure being done to him. I think he was sad when it was over and the Versed started wearing off. Here is a picture of loopy Will right after his lumbar puncture.

The lumbar puncture revealed that Will's intercranial pressure was slightly elevated but not to a level where they thought something was wrong with his shunt. But they wanted to admit us for observation. So we were back up on the 7th floor of the Children's Hospital, just like we were when I started this blog!

I talked with the neurosurgeon that night about possible other causes of the vomiting, aside from shunt issues. He planned to talk with his team and get back to me. In the morning, we thought we were waiting around for a consult from the Gastro Intestinal (GI) team, and possibly the Allergy/Immunology team. But the nurse told us around 11am that no consultations had been ordered and we were actually sitting around waiting for neurosurgery to release us.

This did not make me happy. Don't get me wrong, I was thrilled not to have Will in surgery again. But we still didn't know the cause of the vomiting, I really felt as though we should be transferred to another service, even general pediatrics, so they could start digging into some other causes.

The neurosurgeon told me that digging further into this while we were in-patient was "a waste of hospital resources" and that if we wanted to pursue it further, we should talk with our pediatrician about some out-patient follow up work. I yelled at him - just because this isn't a neurosurgery case doesn't mean it doesn't matter! He has been gagging and vomiting seemingly randomly over the past several weeks, he's low weight, this really can't continue. I was answered with a meek "I'll try to call GI."

I was livid. I called Nate, he got on the phone with the hospital patient care line. I called our CP doctor, who also called the patient care line to complain. I spoke with our nurse (who was appalled with the doc's attitude) and he talked with his supervisor, and they together called the head of neurosurgery to file a complaint.

Within 15 minutes, I had a call from the patient care people, and 2 neurosurgeons and a pediatrician in our room.

The neurosurgeons were there to smooth things over. I know both of them well (we don't really know the neurosurgen who caused all the problems) and they know me, so they took me very seriously when I told them that this needed further investigation. Once they did their political duties with me, they left and the wonderful pediatrician stayed with Will and me for about an hour. She took the most complete history ever, talked through some thoughts, asked me what I thought might be going on. She was just great. She ordered a GI and swallow study for the morning, and scheduled us for an allergy study (which isn't done in-patient).

Will wasn't allowed to eat after 4am this morning in preparation for his studies. Nate said Will got up around 2am for a feeding - thanks baby for staying the nights so I could keep my sanity during the days! - and slept right through 4am. His swallow and GI studies were scheduled for 8am. Then around 8:15am, we found out that a couple of emergencies needed the x-ray machines, so we were bumped to 11am. And the worst was that I couldn't feed him again.

So Will and I watched some History Channel, we rocked, we sang, we did everything but talk about food. Nate took Will to his studies, and he did well. The test didn't show any abnormalities, though, just that sometimes Will swallows well and sometimes he sputters. Then they released us, which we were more than ready for.

The next step is to test Will for allergies. I call what he was doing vomiting, but really it seemed like his nose got very congested, and the snot made him gag. Eventually he gagged enough that he vomited. This would happen at random times of day and night, sometimes 3 or 4 days in between episodes. And after the episode, Will would be tired, but it would be over. The episode on Monday night just kept going, which is why we brought him to the ER.

So if he had some kind of allergy which was causing him to become congested, treating it would ultimately end the gagging and retching. We're doing this test soon, which I don't think Will is going to enjoy, but I think it will be worth it. And of course if it isn't an allergenic cause, then chances are, what Will has is every parent's least favorite prognosis - "its a virus."

Luke enjoyed going back and forth to the hospital to see Will and playing around with doors and nurses. He definitely missed Will when he was gone though. Oma told me that on a couple of occasions, Luke would walk around looking lost, just calling out "W-i-o-w... W-i-o-w..." which is how he says Will's name. Sad, but cute at the same time. Here's a picture of Luke testing out Will's hospital crib. Watch out, Little Gym classes turned kids into bona fide monkeys!

And another one, just to remind you how big the boys are now...

And how little they used to be. This is crib is half the size of the ones the boys were in today!

Thanks so much for the thoughts and prayers and well wishes!

Tuesday, March 24, 2009

The Brakes

We are back in the hospital with William. Last night, he started vomiting a lot. We realized that it was not your typical run of the mill stomach bug, and brought him to the ER around 4:30a. I am sitting here with him now, back again on the 7th floor of the NC Children's Hospital and we still don't actually know what is wrong with him. When we got here, they did the typical shunt radiologic stuff - CT, x-rays and abdominal ultrasound. Unconclusive. They decided to do a lumbar puncture to see if his shunt was malfunctioning. Unconclusive. So now we've been admitted for observation overnight, and are waiting for the neurosurgeons to come out of surgery to talk about our next steps.

Will is in pretty good spirits for a boy who spent the better part of 4 hours throwing up and hasn't been able to nap much or eat anything today. While he was taking one of his short naps, I felt inspired and wrote the following poem. Its kind of personal and raw, but I feel like sharing it.

My Son's Hands

My son’s hands show a map of his history
A tale of a baby born too early
Fuzzy and wrinkled and pink
With a strength and will to survive
Against a silent shielded bleed under the surface
And a fate unbeknownst

My son’s hands show his courage
A potentially crippling disability
Hands clenched at first with the tightest of grip
That slowly loosened over time with love
And started to touch things and explore the world
Amazing and wide and unexpected

My son’s hands show his future
Of a beautiful grown man
With children of his own
And a life we were afraid to think was possible
When those babies ask about his hands
My son will stand proudly and say

My hands have scars from needle pricks
IVs started and failed and started again
To help me stay alive and fight to be here today
Stretching and thriving, stronger to hold you
Tiny white dots on the backs of grown limber hands
That tell a tale, show a history, explain a courage

Monday, March 23, 2009

Movin' on up...

Because we thought life just wasn't exciting enough, we are moving this Friday! I am not going to put our new address on the blog, but if you need our new address, send me an email!

Lots of people have been asking why we are moving... here's the long story...

Since Will was diagnosed with cerebral palsy, we knew that we needed to be in a one story house to make life easier for all of us. Our house now is two story. We also knew that we wanted to move to Wake County in time for the boys' 3rd birthday, due to the better school system and the fact that Will would be starting a special needs pre-school run by the county when he turns 3. So for you math buffs out there, you just realized that the boys were born in March 2007 and just turned 2... so why move now?

Enter Oma and Opa, my mom and step-dad... they decided a while ago that whenever Opa retired from the Army, they wanted to live where ever we did. With the housing market being slow now, they took the opportunity to buy a fixer-upper in a great neighborhood in Wake County although they wouldn't be moving into it until September 2010 at the earliest.

We always knew that it would be *difficult* to stage our house while we were still living in it... between the eruption of toys in the living room, Will's equipment in the former dining room, and Otis and all his glorious hair, it was nearing impossibility. We had just started going down that road of thought when Oma suggested that we move temporarily in her house in Wake County and put our house on the market.

So that's what we're doing!

Oma and some friends and family have been working diligently on the house since closing, and it will be ready for habitation in time for our move on Friday! Anybody want to help us unpack?

Friday, March 20, 2009

Potassium Problems...

Soooooo... here we are back at square one. I took Will to the pediatrician for blood work (to check his potassium) and a blood pressure check. We did the blood pressure first, thinking that it would cause Will less distress than getting the blood draw.


He started screaming when the blood pressure cuff went on his arm. Then he cried harder when it started to inflate. His blood pressure came back "higher than they'd like." Duh. Was it the screaming that gave it away?

So I calmed him down (Will's new favorite thing is 'Head Shoulders Knees and Toes'). We tried the blood pressure cuff again on his arm. More screaming. Another high reading. Blood pressure cuff on his thigh. Screaming. He was so upset his poor little body was arching, fighting against the cuff. He had a wild look of disbelief in his eyes - "Mommy, why are you letting them do this to me?" Ugh. This doesn't get any easier.

They put the blood pressure machine away and tried to take his blood pressure the old fashioned way - with a stethoscope and hand-held cuff. But it was too hard for the nurse to hear his blood pressure over the crying. All of the blood pressure readings they got were high (obviously) so we don't actually know if the new medication is working.

After all the fun with blood pressure cuffs, we still had a blood draw to complete. But thankfully, they were able to get enough blood so that at least the whole entire trip wasn't a bust.

Just got the potassium level back, and it is still high. The old medication supposedly caused elevated potassium, and the new medication was supposed to eliminate that. But there was actually no change in his potassium level since we've switched medications. So now the nephrologist wants us to switch to a low-potassium formula. But the new formula has fewer calories than Pediasure. And we've been having such luck with the Pediasure and Will's weight gain.

I've asked the nephrologist and Will's cerebral palsy specialist (who told us first to start with the Pediasure to help aid weight gain) to talk. I certainly can't be the one who decides if the potassium level or the weight gain is more important. So now, we wait. I've also asked for a prescription for a pediatric blood pressure machine so that we can check Will's blood pressure at home where he's more comfortable. Hopefully we can start to move past this blood pressure-medication-potassium-screaming-Pediasure-blood work hula hoop drama!

Tuesday, March 17, 2009

Happy St. Patrick's Day

So today was officially Will and Luke's third St. Patrick's Day... it was the first "holiday" that we celebrated while they were in the NICU, just 6 scary days after they were born. All I really remember about that first St. Patrick's Day was that we had a cool intern named Chris who dressed up for the day. Me, in my narcotic-induced post-cesarean stupor, thought that she must have been celebrating St. Patrick's Day week because surely 6 days hadn't passed since the boys were born!

Last year, we braved going out to a local Irish pub to celebrate the day. The pub had just opened, so there were meager offerings for food and beverage, but it was fun and the boys were well-behaved. They were little, and just barely a year old.

We didn't brave going out this year, mainly because its tough to keep the boys happy and occupied towards dinner time. So I opted for some cute St. Patrick's Day shirts instead.

We had a small party for the boys' second birthday this past weekend. Our guest list started off carefully and strategically planned but due to a number of last minute weather cancellations, our list of attendees was... hmm... a little odd. We powered through it though, and had a good time. Above is a picture of the cake that I made, which I am pretty proud of! Luke and Will had a good time for about the first hour (which is - realistically - all I was told to count on!). Sometime around the second hour, though, things started to change. Will randomly started puking and Luke just started acting all "terrible two"... thankfully the puking turned out to be nothing and after a short time away from the group, Luke returned to his happy self. Phew!

Friday, March 13, 2009

Our Children Don't Like Cake?!?!

Last year when we celebrated the boys' one year anniversary of coming home from the NICU, I made them this super special vegan carrot cake because they love carrots and I was a little nervous with everything they had been through and didn't want to give them eggs too early. There is an infamous photo - thanks to Uncle Chris' quick camera skills - which catches Luke in mid-vomit while eating my special cake. Will tolerated the cake, but they clearly were not fans. I chalked the whole thing up to the fact that they hadn't really had sweets before.

Over the course of this past year, Luke has liked bites of cinnamon rolls, Three Musketeers bars, other types of sweets, and Will most of the time will only eat fruit. So they clearly like sweet things right? I was excited to try cake again... but this time wanted a test run before their party so that we wouldn't repeat the public vomit debacle of 2008.

So fast forward to Wednesday of this week, when I ran to the grocery store on the way home from work and picked up a box of tried and true Betty Crocker "guaranteed that your kids will love it because who's kids don't like anything mass processed?" cake mix. I made cute little cupcakes and minimally iced them.

We set Luke up in his high chair and he appeared to be interested... he stuck his fingers in the icing and then stuck his fingers in his mouth. And that's when the scowling started.

Then he turned the cupcake upside down to see what was underneath it.

Then he threw the cupcake on the floor.

And then he became exasperated, inconsolable, "Mommy I have icing in my hair and all over my face and hands - yuck" Luke.

We cleaned him up and moved on to Will. Nate held him and I gave him a little sample of the icing, and he too appeared interested. So I gave him another little taste. He moved it around in his mouth a little bit, started to gag, and then threw up all of his dinner on the floor. There are no photos of Will trying cake because I was too busy running for cover!

We had a lot of cleaning up to do. And the boys won't be having cake at their party!!

Wednesday, March 11, 2009

A Very Special Day

Will and Luke turn two years old today! Its really so hard to believe that that much time has passed. For two minutes this morning, between 6:36 and 6:38a, we told the boys that Luke was now 2 years old and Will was still 1. Just like two years ago, when for those same two minutes, we had just one child before a crying, facially-bruised Will made his early way into the world!

In a funny turn of events, Luke managed to give himself another bruise on his forehead, just in time for birthday pictures... its like somehow he feels guilty over kicking Will in the face on the way out of the womb...

We're having cake later today, and a party this weekend to celebrate, so there aren't too many pictures of today yet, but I will post a couple of photos from two years ago and a couple from this morning. Nate found the best birthday cards for the boys, and we opened those already. Luke's was a card of one of his two favorite books, Brown Bear Brown Bear, and Will's was a fuzzy colorful haircut card (Nate joked that it looked like the haircuts that I gave the boys a few weeks ago!).

Enjoy your March 11... we sure are! We have so much to celebrate!

Baby Luke... all 3lbs 6 oz of him

Baby Will... a mean 2lb 15 oz scrappy boy!

Tuesday, March 3, 2009

Happy 4th Birthday, Otis!

Today our first "child" turned 4 years old! Its hard to believe that our little crazy puppy Otis is now almost 30 in dog years. He's even sprouted a couple of old man gray hairs on his chin!

This evening we took Otis to PetSmart for his special birthday trip. It has been our tradition for the past 3 birthdays to take Otis there to pick out a treat and a new collar. He used to wear his collar a lot more than he does now, though, due to the collar clanging and making so much noise. We've got babies sleeping, so Otis' neck now goes naked more often than not. So he didn't really need a new collar this year. We opted for a new leash, since the leash we were using was the one that we brought him home from the breeder with!

Otis enjoyed his trip to the store, though I think he was jealous of the other dogs there in the obedience class. We let him sniff around quite a bit, he got to meet a few new friends, and then picked out his own treat. Luke assisted with this part.

Earlier today, we went to the pediatrician for the boys' 2 year well baby check up and for their final shot of Synagis (thank goodness). Luke tipped the scales at 24lb 12oz and was 33 inches long. Will put on a modest amount of weight since last time we were there, weighing in at 21lb 12oz and measuring 32 inches long (though I am not entirely sure this length measurement is accurate). Though both boys are still on the small side for two year olds (Luke is right around 25th percentile for height and weight, and Will is about 20th percentile for height and about 5th percentile for weight), they both are doing very well health wise and the pediatrician was very pleased.

Our physical therapist gave me a height and weight chart from the Kennedy Kreiger Institute in Baltimore, showing the typical height and weight chart for children, and then percentiles for children with quadriplegic cerebral palsy like Will. I always refer to it when I get frustrated with Will's lack of appetite and weight gain... would you believe that he's right at the 50th percentile for both height and weight for his age! People with cerebral palsy typically have less muscle mass than people without cerebral palsy, and its important to remember that we still need Will to maintain a good balance between muscle and fat... even if that means he weighs less. Having him put on 6 pounds of fat right now might make him appear healthier on the typical growth chart, but it doesn't actually make him any healthier. We will continue to add BeneCalorie to his food and give him PediaSure to drink to add extra calories and ensure he continues to put on weight, and we'll continue to work with a feeding/speech therapist to teach him to swallow and chew... but sometimes its just good to put all the effort into perspective.

In other health news, Luke's pseudomeningocele has officially closed up and is not causing him any neurological problems! Our concern had been that the pseudomeningocele around the shunt surgery location from September was a "bypass" for cerebrospinal fluid, and that when the hole closed, we would learn that the shunt was malfunctioning. But the hole is closed and Luke's acting as normally as you can expect a two year old to act! He's a walking talking parrot these days... almost 50 words!

Will had some blood drawn to test the levels of his potassium. You may remember that it had been elevated (though not a dangerous level) and we stopped all bananas and sweet potatoes for two weeks to see if that made a difference. Unfortunately Will's potassium was still slightly elevated, so we now have a new blood pressure medication to try with him. There is a strict regime that we must follow over the next week to get the enalapril out of his system and start this new BP medication, and then we've got to go in to the blood draw lab in a week to check his blood pressure and potassium levels again.

The most exciting bit of information for me today was that the boys can finally just be one age. Up until now, they had both actual and adjusted ages because they were premature. I always had to remember how old they actually are and then count back 11 weeks in order to "correct" their age for their prematurity. Science tells us that preemies have pretty much bridged that gap by the time they hit their second birthday. So yay, just one age now... now they can just be 2! Both exciting and scary...

And because today I am all about keeping things in perspective, I'll leave you with a couple of photos of Will and Luke when they were just two weeks old... back when they weighed just over 3 lbs. Its really hard to believe that this was almost two years ago!

Nate and a slightly jaundiced, sleepy Luke

Me and bright-eyed Will cuddling

Little Luke

Will lounging