Pre-Operation Day!

Yep! Not 1 blog post today, but 2!  It's been a crazy, eventful week and I've had several people ask me for updates, so here you go!

Today was Jacob's pre-op day.  That means that we went into the Sacred Heart Children's Medical Center and did all of the paperwork, blood work, labs, X-Rays, and EKG's that he needed to be ready to go on Monday morning. Afterward, he had one more visit with the cardiologist to get his clean bill of health. 

I showed up at 9:00 a.m. with Jacob in hand, and proceeded to spend the next 5 hours with him doing the various different tasks and tests to prepare him for surgery. 

They did the standard weight and measuring, which showed that he had indeed begun to gain weight again now that his ND Tube was in the right spot.  Then they took us into a little room where they did 3 nose swab tests and went over paperwork with me.  Next, they had someone come in and do his EKG.  Normally, when they do the EKG it consists of maybe 4 cables taped to his chest.  This time they weren't messing around! He had 12 cables taped to various places on his chest.  But, because his chest is so tiny it was almost humorous to see this little boy with so many cables on his chest that you couldn't even see the chest anymore! All you could see were the testers and tape!

The nurse assigned to us was great.  She brought out a cute little (OK - not-so-little...it was almost as big as Jacob!!) teddy bear that had a medical bracelet on it's ankle just like Jacobs, EKG tabs on it's chests, and the nurse said they'd even be happy to add tubes to the teddy bear just like Jacob's will be when he's done with surgery.  She went on to explain that he'd have a tube out of his arm for the main arterial, a couple out of his stomach to help with drainage and air, one coming out of his mouth for the ventilator, and most likely one more for the pick line, or some such thing. 

We went over Jacob's Hyper Coagulation issues and I reminded her that the doctor had agreed to draw blood to test him for it either today or tomorrow before the surgery.  She noted that it wasn't in the orders for today, but did write it down to remind them to do the test tomorrow. 

When the ladies came in to do his labs, Jacob was true to form.  They wound up having to draw the blood from a couple of veins in his head.  They only needed 2 ml's of blood (probably less than 1/4 tsp) and it took a good 30-45 minutes to get it because they had to 'milk' his head and his blood kept clotting and wouldn't flow.  Again, the ladies were pro's and did a great job.  It was easy to tell that during the process he wasn't in any pain.  He was just mad that they were holding him down and not letting him swat at the lady who was rubbing his head! ;)

After the labs, we went over to radiology where he got a chest X-Ray.  However, this X-Ray was a little bit different than all the other's Jacob had in the past.  He needed to have the picture taken sitting up.  So, in order to get an unobstructed X-Ray, the technicians had this contraption that looked like a midget torture device!

It had a little seat that he straddled and sat on.  Then, they placed this clear plastic cylinder around his body with an opening for his face and placed his arms above his head.  Once around his body, they secured the cylinder which kept him upright and stabilized while they took the pictures.  Once again, Jacob was NOT happy.  Not in pain, but also NOT happy! Yes, there were lots of angry yells involved in this little test.  Luckily they only needed 2 pictures and he was in and out in just a couple of minutes. 



Soon afterward, they declared Jacob's tests complete for the day and reminded us to be back again at 5:30 a.m. on Monday morning.  The surgery will begin at aprox. 7:00 a.m. and his surgery is slated to last 285 minutes (4 1/2 hours).

We went back to the little room, got Jacob dressed, went up the the cardiologist who gave him a clean bill of health, and all the while, Jacob just glared at me and occasionally belted out a little yell in my direction with a bit of an unhappy snarl.  For some crazy reason, the day full of tests and pokes had put him in a bad mood and he wasn't going to let me forget it!

I couldn't help but giggle.  My sweet, mellow, little boy had finally grown an attitude and an opinion!  I guess he's got a little bit of fight in him after all!  Courtney! Watch out! You may have some competition in a few years.  Well.....OK, Courtney's still got him beat hands down, but he might give Nathan a run for his money! ;)

One for the Road

T minus 4 days until surgery and Jacob decided he needed one more visit to the emergency room before his surgery. 

Luckily, it wasn't for anything major.  On Thursday morning I was doing the usual....drive Elisha to seminary, come home, and if Nathan is extraordinarily generous (and he usually is - the sweetheart!) he will take care of Courtney while I get and extra 1/2 hour's sleep.  Then the a.m. frenzy of feeding the kids, getting everyone ready for school and the day, loading everyone into the suburban and getting Nathan to school. 

After dropping Nathan off, I came home and was beginning to clean out the suburban (yes, occasionally I do clean) and heard a little coughing sound from Jacob in his car seat.  I went over to check on him and he was in a full-blown gag-and-vomit fest.  As I hurried to get him out of his car seat he proceeded to vomit about 2 oz. of formula.  Funny thing is, he hasn't been eating anything orally in days, and his feeding tube bypasses his stomach and goes directly into his intestines. 

It didn't take long to figure out that his ND (Nasal Duodenal - ie. goes in through his nose and into is duodenum which is located in his intestine) tube had dislodged and was spilling into his stomach. So, I called the pediatrician's office to let them know his ND Tube had dislodged and to find out if they wanted me to go in that day, or if I could wait until Friday when I would be in for his pre-op. A few hours later one of the nurses called and said that I needed to go in that day.  So, as soon as KC got home, off we went to the emergency room to have Jacob's ND Tube taken care of. 

We went in, they X-Rayed him and guess what? You guessed it.  The Tube was dislodged:

Jacob's tube - just barely in the top of his stomach

They showed us a copy of what his tube had originally looked like in his stomach when they put it in the first time:

By looking at the picture, you could easily tell that the tube had originally gone into his stomach, looped around and then into his intestines.

But the new photo (top) showed a straight shot to the top of his stomach.  All KC and I could ask was, "Where'd the rest of his tube go?".  Come to find out that the ND tube is labeled with numbers so that you can gauge where the tube is in the body.  The first time, the tube at the opening of his nose was at "46".  But, when we brought him into the hospital on Thursday, it was at "22".  Apparently, without us even  noticing it, his tube had been gradually migrating out of his nose over the course of the month and had essentially come out by about 8". 

Luckily, we had a great doctor in the Emergency Room who was able to re-insert his tube right there on the bed in the room - no anesthesia, and only a couple short minutes of crying by Jacob.  Radiology double checked that it was inserted, and then they sent us on our merry way.  We were in and out of the hospital in a lightning-fast 4 hours!!!  And, with no pokes!!! :)

Little Jacob is Itsy Bitsy, Teanie Weanie

This week was filled with doctor's visits.  But this time not all of them were for Jacob.  Courtney got her 18-month check up with the doctor which meant shots (lots of them!) and her height/weight measurements.  She weighed in at just under 30 lbs and 35 1/2 inches. This means that she is in the 95% for both height and weight for her age.  But if you look at her, she looks and acts more like a 3 year old than a 20-month old.

Courtney is our third child.  Elisha (now 15) always seemed to come in around the 95% mark for all of her check ups and now measures in at a modest 5'10" - perfect for volleyball, her favorite sport.  Nathan (now 11) was totally off the charts - in fact, at 5'5" in height - he ranks in somewhere around the 110 - 115% mark.  I figure he'll be taller than I am by the time he turns 12, and he'll outgrow Elisha probably the year after that.  KC and I figure that at the rate he's been growing all his life, he may very realistically break the 7 foot mark, or get REALLY close to it.  It's darned near impossible to keep that boy clothed at his rate of growth.  Taking Elisha's numbers into account growing up vs. Courtney's, we figure our little darling will break 6 feet when she's done growing. 

Then there is Jacob.  Sweet, sweet Jacob.  Seeing Courtney's numbers piqued my interest so I went and found a growth chart to find out where he stands in his rankings for his age.  At 11 lbs and 22" He's hovering right around 10%.  At that level, he will be lucky to reach about 5'5" or 5'6" by age 18. Woohoo! That means that I won't be the shortest person in my family!!   I guess we short people will have to stick together, right? :)

On a more sober note - we met with the early interventionists for the second time to see how Jacob is fairing developmentally and to go over some of his assessments from his first visit.  As expected, he tests well under the national average, but that is to be expected for a baby with Downs.  What I didn't expect was that we had been discussing his feeding during general conversation and I had explained how Jacob's gagging had gotten worse.  I demonstrated with a binky how he gags if you just put the binky to his mouth and all I got was a "Whoa!" from all three ladies. Apparently, he needs a feeding study done on him and there are entire departments that are devoted to this!  Sooo, I will add the feeding study to my list of things to research for Jacob.  Good thing I quit my day job! :)