Tuesday, November 12, 2013

Marathon of Appointments

I am so far behind in updating this blog!  Since my last update about our family we've celebrated birthdays for both Zachary and Eli.  We had a great experience at the Colts vs Broncos game at Lucas Oil Stadium.  We had a very low key Halloween and participated in the downtown Christmas Stroll in Washington.  We've had a lot of fun being together at home for the past month without any hospital admissions!  Something else we've done is have a few check ups for Eli.  Specifically, Nov 5 and 6.  Here's a breakdown of the results of those two days:

GI (Gastrointestinal):
Our first appointment was on Tuesday.  It was with Kelly, GI Nurse Practitioner.  Eli doesn't really have any GI problems that need close monitoring, but he does have and still utilizes the feeding tube so we have six month appointments with the GI group.  Overall, she's pleased with how he's doing.  The only concern was that Eli hasn't really gained any weight over the past three months or so.  At times he's lost a little and gained that back, but overall his weight has plateaued.  Considering everything his body has been through since August (surgery to drain large pleural effusion, pneumonia, severe staph infection in the blood requiring 6+ weeks of antibiotic therapy, and seizures), I'm surprised his weight has been this steady!  However, everything he's been through also points to the fact that he needs more calories to heal.  If it were totally up to Eli he would live on SunChips and milk with the occasional bite of his brother's leftover sandwich from his lunchbox.  Thank goodness for the feeding tube with nighttime feedings.  We are now giving Eli one and a half cans of PediaSure each night instead of just one can.  It's not a big change, but it's four ounces more and that equals an extra 120 calories.  So far he's tolerated it very well.   In fact, we think his appetite has been pretty good (for Eli anyway) and possibly increased a little at a few meals.  Our next appointment with GI will be in six months.

After our appointment was over we made the short walk to the hospital and up to the third floor.  Our buddy Madison was a patient there because she had her Fontan surgery the week prior.  I had briefly met her parents about two years ago, but had never met Madison and they hadn't met Eli.  We finally remedied that and got a nice visit that afternoon.  It was strange to walk in because she was in one of Eli's former rooms, but then I realized that Eli has been in nearly half the rooms on that floor so we really can't stake a specific one as "ours".  Madison and her parents were waiting on an echo to be done and read so they could possibly go home.  Later that night I found out that Madison did get to leave the hospital that evening and was back home with her parents and sister.  Madison's previous two surgeries had not gone according to "plan" and she was hospitalized with several complications both times.  Her family expected nothing less from the Fontan (especially after following Eli's story and realizing some of the crazy things that could occur).  Fortunately for them, she recovered nicely and was sent home a week after surgery!  As far as I know, everything is still going well for them.  Thanks for the prayers for Madison and her family!

Wednesday morning started early for us.  We had to be at a doctor's office (near the hospital) by 8am.  We had stayed at my sister's house, but it was still a 40 minute drive, possibly longer with morning traffic, and I am not a morning person.  Plus I had to pack and load all of our luggage (one bag), the cooler with Eli's meds and drinks, the oxygen, the diaper bag with enough supplies to last all day, give Eli his morning medicines, and finally remember to bring Eli himself.  Did I mention that I am not a morning person?  Well we did fine and made it with a little time to spare. 

First on the agenda was an EEG (electroencephalogram).  It measures the electrical activity of the brain.  This is done by attaching various electrodes to Eli's head and chest.  It reads the electrical activity produced by his brain as he is subjected to stimuli such as flashing lights.  Then he's supposed to be calm and quiet for about 40 minutes  No books, no games, no coloring, no picture albums, just calm and quiet.  "We like it if the child will sleep" says the tech.  Really?  A nap at 8:30 in the morning?  Oooookkaaaayyy, let's try.  After nearly 30 minutes of begging for his balloon game that he KNEW was in the diaper bag, he gave up and slept some.  For about ten minutes.  It would have been longer, but then the tech said it was time to wake him up.  She flipped on the lights and scared the dickens out of him by loudly calling his name.  Another few minutes of monitoring him and it was over.  I know the tech was just doing her job and she was actually very nice and gentle with Eli, but to me this whole experience was borderline barbaric.  Of all the testing and procedures he's gone through, this was one of the toughest for me to watch.  Obviously he wasn't that stressed out if he slept some, but it was rough to deny him things and try to make him relax when one of the last places in the world a toddler with his medical history is going to relax is a procedure room in a doctor's office.  Anyway, once it was over, it was time to remove the electrodes from his head.  They were anchored in there with some goop that turns to cement (exaggerating somewhat here...but not much) and over the cemented electrodes were strips of tape.  Most of it loosened with wet washcloths, but Eli was over it and was screaming the whole time.  She was gentle and yet worked quickly.  It was like she had done it before!  Once it was all removed we were sent back to the waiting room.

After a little while we were called into another room and Dr. Mott came in.  He had reviewed Eli's EEG and was very pleased.  He did not see anything abnormal on it and (at this point) we have no reason to suspect anything but the low blood sugar to be the culprit for Eli's seizures.  He asked how Eli was doing on the Keppra (antiseizure medication he's been taking twice a day since the seizures).  We had been warned that Keppra can change a child's disposition for the negative and that was exactly what we'd been experiencing with Eli over the past several weeks.  We realize he's a toddler so we don't expect him to have great control over his emotions in general, especially combined with the ups and downs he's experienced this year.  However, the mood swings he was going through were frustrating not only to us but to him as well.  It was clear that he was confused by the way he felt.  That made it very difficult for us to console him.  For the past several weeks, my days were spent totally at Eli's request which would often change several times in ten minutes.  It was beyond normal toddler fussiness.  It was really wearing both us down, physically and mentally. 

Dr. Mott had warned us this could happen.  In the beginning he said there were really only three things that could be done:  a) add vitamin B12 to Eli's medications...it's not sure how, but it acts as a counter agent to this aspect of Keppra, b) wean him off the Keppra, or c) change him to a different antiseizure medication.  After seeing Eli's test results and examining him, he said we could wean him off the Keppra.  That's what Bryan and I were hoping would happen.  This way we're not adding another medication to Eli.  Also, the only way to find out if Eli really needs an antiseizure medication is to see how he does when he's not taking it.  With the combination of his exam and test results, we don't think he needs it, but the only way to know for sure is to take him off it.  Starting the next day we began a lower dose of Keppra (about half the amount he was taking) and he gets it twice a day.  After two weeks we will stop Keppra altogether.  It may be wishful thinking, but we think we've already noticed a difference in Eli's demeanor.  Who knows, maybe the slightly increased appetite plays into that as well?  We go back for a follow up in March, sooner if necessary.

After we checked out of the neuro office, we braved the cold rain and got back to our van.  We drove the short distance to the hospital.  We registered for his outpatient chest xray and got that done.  Then we went to the cafeteria for lunch.  Eli was very hungry, cranky, and not too much fun at this point.  He was tired and wanted held while we waited in line for our food.  I don't blame him and it felt good to hold him, but it was difficult to hold him, our large diaper bag with necessities (I didn't overpack, we used nearly every item in the bag at some point in the day!) and carry our tray of food.  After a few bites he was feeling better, but began crying because I hadn't bought the piece of bread he apparently thought I did (I never saw slices of bread to be bought nor did I hear him ask for one).  This went on for a while but I got him to leave the cafeteria and come to the main lobby with me.  There's a fountain out there he loves to watch.  We had a little time to waste before trekking to our next appointment so I gave him a handful of coins to toss in the fountain.  I forgot how fast he can throw and had to dig out more coins.  About $7 later (another slight exaggeration, but whatever the amount it was money well spent because he was smiling and friendly again), we headed to the Heart Center.

Once there, they did the usual weight (third time it was taken in less than 24 hours), his height, blood pressure, oxygen saturation, and an EKG.  All his numbers were good, but the oxygen was a little low at 87%.  Dr. Parikh (main cardiologist) came in and looked him over.  Sara (nurse practitioner) was in there too and did her exam.  Both thought he looked great, sounded great, was cute as can be, and hung the moon.  I love that they make us feel that Eli is the most special child to them (pretty sure they do that to all their kiddos, but I like to think it's just us!).  The best news they gave us was that Eli's chest xray looked great.  The effusion is still present, but much smaller than on the xray taken in early October.  No one is too concerned about the effusion that's still there.  Either it will diminish more over time or it won't.  Eli isn't having any symptoms from it so as long as he's fine, they're fine with it.  In fact, we were told to decrease Eli's Lasix (diuretic, removes excess fluid from the body).  In about a month we can start trialing how Eli's sats are without oxygen while he's sleeping.  Dr. Parikh said he didn't need to see Eli for a few more months and we could coordinate that visit with our neuro follow up appointment to reduce trips to Indy.  He said he hadn't planned on doing an echo that day, but since he wouldn't see Eli for another four months he'd do it just to check everything out.  He was very pleased with the echo findings.  Dr. Steinberg (pacemaker cardiologist) wanted Eli's pacemaker to be interrogated while we were there so we went back to the room to wait.  The lady from the lab came in, completed that, and stepped out to call Dr. Steinberg with the results and see if he wanted any settings changed.  She came back in and made the minor adjustments he requested.  Eli was beyond tired by then and fell asleep in my arms.  While waiting for the final word that we could leave, Dr. Steinberg popped in.  He made it back to the office and found out we were still there so he came in to say hi.  That's what I love about that place, he'd already gotten Eli's report and given orders, but came in just to lay eyes on him because we were there.  Eli slept through our discussion, but I got more info on when we'll be checking his pacemaker from home.  Because of Eli's multiple admissions since getting the pacemaker, we haven't had to do a check from home yet.  In fact we don't even have any equipment to enable us to do that!  We're supposed to be getting that stuff and some information on it in the next week or so. 

We left the office and I carried the heavy load of Eli (which still feels so good in my arms!) and our stuff to the van.  Have you ever tried to strap a sleeping 30ish pound kid into their car seat?  It's not easy, but I got it done.  By the time I got into my seat, Eli was wide awake.  He looked right at me with his hands in the air and said "All done!"  It was very cute!

I asked if he was hungry and he said he wanted SunChips.  We were out so I drove to a gas station where we luckily found some.  As we waited in line to pay, another register opened up.  The cashier said "Next, please!" with an accent.  Eli's head immediately popped up and he very loudly said, "Doc Preek!"  Now I agree he did sound a lot like Dr. Parikh, but I know it wasn't him.  However I couldn't convince Eli of that and he yelled it each time the man said "Next, please!"  That only happened four times and the two guys in front of us could barely contain their laughter at Eli's confusion and my attempts to quiet him.  Finally it was our turn and as we approached the register the cashier spoke to Eli.  I don't remember what he said to Eli, but Eli stared at him and loudly informed the man "You no Doc Preek!"  Luckily the man laughed and said he wasn't, but he wanted to give Eli a five anyway.  Eli let it happen and was satisfied.  Needless to say, I couldn't get to the van fast enough! 

Our trip home was pretty uneventful, thank goodness.  We drove straight to Zachary's school and made it literally just minutes before his kindergarten program.  Most (maybe all?) of the kids had a line or two to speak between their songs and Zachary was to be the second one speaking.  He did great and the whole program was really cute.  After supper Eli was put in the sink so we could wash the rest of the EEG cement/residue/gunk out of his hair.  It bugged me all day that his hair was crunchy yet oily from that stuff.  We washed him twice and now nearly a week later I think it's all out!

Thank you so much for the prayers for a safe trip, good results, and a return in time to see Zachary's program.  We've increased Eli's nighttime feeds and decreased the meds we were told to and so far things are going really well.  Please pray that he's able to come off the Keppra and does not have any type of seizure activity once completely weaned.  Also, we've been home for a little over a month and I'm starting to get that feeling that we've been home too long.  Having good news at all the appointments eased my fears a little, but there's always the fear that we're missing something or of the unknown.  You could add peace of mind to your prayers for us too!  Thank you so much for reading and remember to cherish Every Little Beat...