Sunday, December 23, 2012

Second Hospitalization - A little scary

LB caught another stomach bug.  He had a couple messy diapers for both us and the sitter on Tuesday, but he was happy and eating just fine (26 ounces of formula, plus three meals of solid food and a nice bedtime snack).  As I was rocking him back to sleep very early on Wednesday morning, he had a diaper blowout that required both of us to change our clothes, so we kept him home on Wednesday to keep an eye on him. Once again, he was his usual happy self and eating just fine (28.5 ounces of formula, plus three meals of solid food and a nice bedtime snack). 

Thursday morning, he had three messy diapers before breakfast so he once again stayed home with me.  Although he was still happy and eating just fine, he was getting a little bit upset about the nasty diaper rash he was developing. I was getting a bit concerned about the volume of diarrhea he was having because it was to the point that I could barely throw the diaper outside in the trash and get my hands washed before we were changing another one.  By the afternoon, I called his specialists at the metabolic clinic to see what we should do.  The last time this happened, he had messy diapers, but he was also not eating. He was eating just fine this time, so I wasn't quite sure what to do.

After hearing our saga, the doctor immediately said that LB was too young to be losing that much fluid.  She wanted him to have lab work done immediately to check his levels and the only place we could go at that time of day (5 p.m.) was to the emergency room.  She asked where we were going so she could call ahead and warn them that we were coming.  I packed the diaper bag with lots of formula, wipes, bottles and our special can of polycose (sugar solution) and our prescription of carnitine that has been waiting in our cupboard for use when little brother is sick and headed for the ER.

When we arrived, they were waiting for us and we were ushered back into a room quickly.  The pediatrician who saw us had already talked to the metabolic specialist and had ordered his needed labs and IV fluids.  She said she was surprised that LB looked so good.  She had expected him to be lethargic and dehydrated, but here he was laughing at her, drooling and trying his darndest to wiggle out of my arms so that he could explore our new surroundings.  Things seemed to be going well, although she warned us that we likely wouldn't be going home right away since the metabolic doctor had advised her that we should be admitted for observation and fluids.

Things started to get worse when they came to start his IV.  It was a team of two nurses.  One nurse tried the inside of his left elbow with no luck.  The other one tried the inside of the right elbow, again with no luck.  Then, the first nurse said she would go get another nurse.  The third nurse I recognized as the one who was able to get his IV in on the first try the last time we were in the ER, so I felt confident that this would be accomplished quickly.  I was wrong.  She tried his left elbow and his left hand with no luck either.  We were up to five pokes and there was a bag of IV fluid that he needed sitting right there on the counter.  I was beyond frustrated that they couldn't find a single vein.

A little time passed and Husband arrived to be my emotional support since our older son was now asleep with the neighbor watching him.  They called down two nurses from the floor, one from the PICU and one from the NICU.  They tried to get veins in his ankles on each foot without success either.  We were told that babies this age were hard in the first place because of the layer of baby fat they have.  LB was extra hard because he was dehydrated and that made it even more difficult to find a vein.  We were now at seven pokes.  Still no IV.

Fortunately, he was still drinking just fine, so the pediatrician in the ER called the metabolic physician and asked if we could attempt to have him maintain on his own orally.  She agreed and gave us instructions for mixing his polycose and carnitine with pedialyte.  He needed to drink a minimum of 2 ounces every hour and that he did.  Once the 8 tablespoons of polycose was added to four ounces of pedialyte, we had 5 ounces of liquid that he happily downed every time a bottle of it was presented to him.  I'm sure it was like drinking a pixie stick.  I was worried that he would never drink formula again by comparison.  We were admitted to the pediatric unit shortly after midnight and I spent the night sleeping on the hospital couch with LB and waking every 2 hours to feed him his sugar solution.

By the morning, his diarrhea still had not subsided and his labs looked bad.  Really bad.  The physician on the floor said that even if she didn't know he had MCADD, his labs indicated that he needed IV fluids.  He was losing more fluid than he was taking in and at the rate of loss (3 diaper explosions per hour at a minimum), there was no way he could make up that ground just by drinking.  Even an adult couldn't do it.  They needed to get an IV in.  So, they called in some more nurses from the PICU, each of whom poked him once and neither of them got the IV in either.  We were up to nine pokes now and I was practically hysterical.  I couldn't stand to see anyone else dig around under his skin for  vein while he wailed in pain.  I knew he needed the IV.  I knew they were just trying to help him, but it was still so hard to watch.  I hated seeing him hurting. 

The doctor said it was time to start thinking about plan b -- possibly a central line or possibly a pic line -- because he needed those fluids badly and the longer we waited, the worse it was going to get.  Now, I was really scared.  It was hard enough to watch the IV attempts.  Now, they were talking about sedating him and taking him to the OR?  And the scariest part was that no one was telling me reassuring things like "he'll be ok" or "he's still doing fine."  The conversations with the nurses and the doctors all said one thing -- "he needs IV fluids fast" -- yet no one seemed to be able to help him.

At this point, LB was exhausted and had fallen asleep in my arms.  The doctor said to let him rest for a bit.  They would try one more time for a peripheral vein with their very best person and that they would do everything they could to stack the deck in his favor (warming his hands and feet with warming pads, taking him to the procedure room on the floor where the light was best, looking at all the options for veins before taking the very best option).  If it didn't work this time, we were going to get serious and head to the OR.

The entire time LB was napping in my arms, I was praying.  I was sobbing and I was praying.  I called/texted/facebooked everyone could think of and asked them to pray for LB.  I needed some divine intervention in the form of someone who could get an IV in him.  I didn't want to see him go through a procedure like a central line.  I needed to see that bag of IV fluids that had traveled with us from the ER to the floor doing him some good.  I needed to know that he was going to be ok.

Shortly after noon, his nurse came in and said it was time.  I took a deep breath and carried him down the hall to the procedure room where we met Heidi, the nurse from the NICU who was our last hope.  She looked closely at all the options she had to place the IV before deciding on his left foot.  I laid him down on the table and held him securely while singing a song softly into his ear.  I couldn't watch again.  He cried and I sang to him.  After a while, I heard Heidi ask if she should draw the labs, too.  I looked up and asked if the IV was in.  Heidi smiled and said she had gotten it on the first try.  I was so happy that I started weeping.  He was finally going to be ok.  He was finally going to get the fluids that he needed.  Our prayers had been answered. 

We returned to our room and set about letting the IV fluids work their magic.  They wanted at least 12 hours of fluids, so we would need to spend another night in the hospital.  They also wanted to give his intestines a break, so they switched him to a special lactose-free formula.  They said I could feed him as often as he was hungry, but only 2 ounces at a time and to try and space the feedings at least 30 minutes apart so we weren't overwhelming his system with large quantities of liquid that would inevitably just go right through him. 

It was hard to keep him happy with only 2 ounces at a time, especially because I was also preventing him from practically all physical activity to protect that IV site from any damage.  I had a stir-crazy baby who hadn't been allowed to crawl, cruise or walk since Thursday afternoon or inspect the contraption wrapped around his left foot, despite the fact that he was being fed pure sugar for 24 hours before being switched to intravenous sugar that afternoon.  Let me just say, it was an interesting stretch of time.  Thankfully, Husband brought us a nice assortment of books and toys and the floor had a highchair that they had brought to our room.  It ended up being a rotation of me singing songs to him while holding/bouncing him around the room, followed by a stretch of sitting in my lap reading books, followed by sitting in the highchair playing with toys, followed by a bottle and sometimes a nap.  We did whatever kept him happy and prevented him from pulling at his IV and it worked.

By Saturday morning, his diarrhea had subsided and his labs were looking much better.  His sugar numbers were normal.  His acid numbers were normal.  His salt numbers were high though so they disconnected the IV since he was probably getting too much salt through the combination of IV and liquid intake by mouth.  We were told that they would repeat the labs that evening and probably send us home if he continued to feed well, continued to have normal stools and had good lab results at the end of the day.  We counted the minutes until the labs were drawn and were ecstatic when the results came back normal.  We were going home!  Three days before Christmas, we were headed home!

That night, as Husband and I tucked our boys, safe and warm, into their very own beds, under our roof, we were profoundly grateful.  While LB and I were in the hospital, our older son was home with Husband suffering from a similar stomach bug.  In all, the last few days in our lives were not pretty -- hospitals, a crying baby getting poked for IVs and blood work, dirty diapers, vomit, you name it -- but even if we only ate toast on Christmas and even if no one in the house felt well enough to change out of their pajamas, it was going to be just fine because we were going to all be home together.  I didn't need anything else for Christmas, just the ability to be home with my boys.  My Christmas wish had already come true.

Thursday, December 13, 2012

2013 Consumer Task Force on Newborn Screening

I am very excited to announce that I have been selected to serve on a national task force on newborn screening! I applied at the end of October and found out last week that I was picked. I get to spend the next year learning more about newborn screening and developing a project to expand information and awareness about the newborn screening system. Most importantly, I get to travel to Washington, DC in May to talk to the Secretary of Health and Human Services Advisory Panel on Heritable Disorders in Newborns and Children to advocate for the infant screening system. What an honor! I hope that my participation helps other families in our situation.

Friday, December 7, 2012

Nine Months

And, here we are!  Nine months later.  The fun is only just beginning! 

Climbing is his new favorite pasttime.  He climbs entire flights of stairs with ease.  He has moved on to improvising stairs out of common household objects.  For example, he used the toybox as a stepladder to get himself onto the coffee table.  He used the Christmas decoration boxes as a stepladder to get his hands up onto the kitchen counter.  If it even remotely resembles stairs, he will climb them.

He figured out how to clap on command. When you say "hooray!", he claps with gusto in response. He also sometimes claps for Daddy when he does football signals for him. Touchdown and illegal procedure are especially worthy of applause (and laughing).

He really enjoys chasing his big brother around, or if this brother isn't around, he also likes to torment the dog.  She continues to be a great sport as he sits and jingles the tags on her collar or uses her collar as a way to pull himself to standing.

He's still very much into things that roll -- balls, cars, etc.  We can spend quite a long time racing cars across the kitchen floor and rolling balls down the treadmill while LB laughs and laughs. 

We've moved onto eating a lot of finger foods.  He likes noodles and all types of canned fruits, plus steamed veggies, Saturday morning oatmeal pancakes and, of course, Cheerios and Puffs.  He gets three meals a day of solids now, plus a bedtime snack and around 24 ounces of formula.

Sleeping might be getting a little better.  We re-discovered that he has a white-noise toy and the sound of falling rain as we lay him down in his crib seems to help him settle into comfortable slumber.  He realizes that he's been tricked into sleeping in his own bed a few hours later, but at least I'm getting to lay down in my own bed for a few hours a night now (up from about 15 minutes per night, so that's definitely progress).

We saw the pediatrician today and here are his stats:
  • Height - 29 inches (75th percentile)
  • Weight - 18 lbs, 7 oz (30th percentile)
  • Head - 17.25 inches (17th percentile)
We opened up the 12 month clothing bin (his big brother's hand-me-downs) and it was all shorts and t-shirts, so it looks like he's going to luck out and get himself a new wardrobe again in this size.   One day, I'll open the hand-me-down bin and actually find things that are in season!!

Oh, and we went and got him his first pair of shoes.  Size 3.5 Wide.  Isn't he snazzy?