Spring Break

This week was supposedly my first spring break of dental school, unfortunately it wasn't much of a break at all.  Since I wasn't at school all week Tennille let me take shifts during the day with Jett.  Usually this is accomplished by Tennille and one of our moms, but since I was around I picked up where the moms usually fill in.  My mom was still around though, and I'm glad she was.  Without her I don't think I would've ever had a chance to shower, go to the bathroom, eat, etc…  I don't think we have ever explained Jett's daily "routine", and thats because he has no such routine.  Everyday is a guessing game.  I didn't know all that was involved with Jett during the day when I'm at school, until this week.  Tennille is a total SUPERSTAR to do this all day, every day and has my praise, & respect!

Although I didn't get much of a spring BREAK, I actually kind of enjoyed spending some time with Ten and Jett (at least for the first part of the week).  Unfortunately it was a huge roller coaster week with some Jett experiments that have been un-fulfilling so far.

Last week Jett had a PH probe done to check how severe his reflux actually was.  Ten and I have consistently begged for this test because we never believed he had reflux, and his symptoms were related to something else.  The test came back and they said that he doesn't reflux anymore than a regular developing baby.  Other than a big "told ya so" to the doctors, the test helped us decide that we would want to replace his NJ tube with a tummy button.

Monday: Doctor for a weight check and Vitamin B12 shot (weekly injection for 4 weeks).  Jett luckily gained weight again this week.  Unfortunately it was only 2 oz in 7 days.  We were hoping he would weigh 9 pounds, but were a little disappointed.  Hopefully next monday.  Currently he is 8 lbs, 14 oz

Tuesday: Went back to the doc to remove his NJ (feeding tube) and replace it with a NG (another feeding tube, google them if your curious).  He is scheduled to get a tummy tube (feeding tube surgically placed through your belly directly into your stomach) on March 29th.  Since he has not had food in his stomach for 9 weeks now, we wanted to see if he could tolerate it before we had the surgery done.  Currently Jett's feeds are going at 1 oz/hr for 20 hours a day.  This is pretty inconvenient, so the goal was to eventually get him to do "bolus feeds", where we feed him 3-4 oz's in a short period of time (like a healthy baby would eat, just through a tube instead).  To reach this goal we had specific instructions on how to ramp up his feeds to get him to that point.  To make a long story short, he is back on continuous feeds for the time being and most of my clothes smell like puke.
The highlight of our day happened on the way home from the doctors office.  We got rear ended while we were stopped at a stop light.  I pulled into the turning lane to get out of traffic, and started to get out of the car when I see that D-bag that hit me take off.  I hopped back into the Scion to try and get a plate number.  Unfortunately, our little box of fury seems to have been neutered and we couldn't quite get close enough to get the plate number.  After an intense 5 minute slow speed chase through some neighborhoods, we decided that with Jett in the back seat it wasn't a good idea to keep chasing them.  We turned around and headed home.  As we turned on to the main road to head home, we happened to pull right behind our compadres that we were chasing.  So we got their plate number and called it in.  On our way home we happened to drive past the place that the accident happened.  I saw a few pieces of plastic on the ground, so I decided to go pick them up in case they were off the offending car.  As I bent over to pick up one particularly large piece, I turned it over and this is what I saw.

3 lessons this teaches us:
-Don't do a hit-and-run
-If you do, make sure you're in a car that won't fall apart
-If your car will fall apart, and you decide to run, expect to get made fun of (and get caught)…IDIOT

Wednesday: Jett was especially fussy today.  He was really wiggly, whiney, wouldn't ever sleep, and was  in pain all day long.  We had a prescription (another experiment form the doctors) that we were waiting to fill until later in the week, that is supposed to calm him down, and bring his nervous system down a notch.  We decided to fill the prescription and start him on it that day.  It made him sleep really well and seemed to be working.
On a non-Jett related note.  We put a deposit down on a Townhome that we are buying in Omaha.  Through all this craziness, I sometimes forget that I am moving in less than 2 months.  Ten will be here until at least September, but I know she will have lots of support here, and move ASAP.

Thursday & Friday:  Other than a couple episodes of puking, Jett did really well these 2 days.  We were thinking that this may be the right medication for him.  I even had my first chance to cuddle with the little guy on friday.  When he is calm, not arching his back, or in pain he can really melt your heart.  He doesn't really smile yet, but you can see him trying sometimes and it is the sweetest thing he could possibly do.  I don't think he has had much enjoyment so far in life yet, so to see him relax and breath calmly is huge to me.  It gives me a little bit of hope that we get him out of misery and help him start to grow, learn, smile, laugh, and enjoy life as much as he can!

Saturday: After a couple of good days, anyone can predict what would happen next.  A horrible, stressful, finale to the week!  Ten woke up with Jett at 6 am and he started having seizure like symptoms.  He has had these before, and we actually had an EEG scheduled for next monday to check for seizures.  Usually we just ride them out and he is back to his normal self after a little bit.  Tennille went back to bed and I took over.  By 11 am he still had these seizure symptoms.  This was going on 5 hours.  I called the neurologist at PCMC and discussed the situation with him.  He told me to come up so they could monitor him.  Ten hadn't had much sleep the night before so I didn't wake her, and just went to the hospital with my dad.  Having a bunch of tubes coming out of your kid really helps you in an ER situation.  I walked in the doors of the hospital, didn't even tell them why I was there, and they had a nurse shuffling me into the back before I could even speak a word.  I bypassed the check in, the initial screening for vitals, and assignment of an ER room, and went straight back.  Funny thing is that Jett wasn't even seizing when they were rushing me around, he was being normal (for Jett).  But his normal is head hanging, back arched, and eyes rolled back… oh well, I'll take it when life throws you a bone!  Anyway, they ended up sticking him with an IV ( he is amazing with needles, he has never cried in the many times he has had an IV), running some blood tests, then running an EEG on him.
An EEG monitors brain activity and helps to determine if someone is having seizures.  They work best if you can catch a seizure episode, but that idea is rather counter-intuitive given the process of placing the leads.  The EEG consists of 23 leads that get stuck to Jett's head, then they have to stay on for at least 30 minutes while they monitor him.  It would be hard to place them on a calm Jett, but since he was in and out of these "episodes" it was a whole different story.  By this time Tennille had woke up and come to the hospital so she was there to help. To place these 23 leads we had 4 people, 8 hands, 3 binky's, a whole lot of sugar water, and a couple of Valium for Ten and I afterward.  Just imagine catching an 8 pound trout, trying to hold it down while it is flopping, and sticking 23 pieces of tape to its slippery skin, Thats kind of what it was like.

This poor kid can't catch a break… He is such a fighter though

                                  

After all that, the doctors said that these weren't seizures.  In addition I asked him about infantile spasms, which we have been worried about, and he said he doesn't have those either.  They attributed all the seizure-like symptoms to his irregular nervous system.  I'm not a doctor but I have to wonder if these (and Jetts puking) are side effects of the meds he started on Wednesday.  The docs sent us home with another prescription to try and help bring his nervous system down a notch.  That brings him up to 6 medications he gets every day. Yay!!! a new Jett record.  Needless to say Saturday was a rather stressful one.  We are now getting used to going to the ER, but usually its to get his NJ replaced not for something like this.  I'm sure we will be there many more times, but hopefully not in this fashion.
Saturday had been a pretty rough day, and Jett was on his new meds and really had calmed down.  My parents are amazing and took Jett and kicked us out of the house for the night so we could do something.  We had an awesome dinner and some alone time, it was a great finish to another long week.

Now, my real spring break starts tomorrow morning when I get to leave to go to school again!