Friday, January 20, 2012

GI Appointment

Yesterday (01/19) Bryan & I took Eli to Indy.  There was some snow on the ground and it was actively snowing when we left town so I got my snow fix for a little while!  Eli had an appointment with Dr. Maisel, his gastroenterologist.  She's the one who placed his feeding tube.  He weighed 20lbs 13 oz and was measured at 30 inches long.  Each of those are in the 10th percentile for his age.  We really haven't followed the growth chart for Eli the way we did with Zachary; it was too depressing.  For a while, both our boys were off their respective charts, but in different directions.  Now Eli is on it and consistently gaining an appropriate amount of weight!

Dr. Maisel was very pleased with his size and his activity level.  Our next GI goal with him is to get him off his special formula and onto regular milk products. If you don't remember, he was diagnosed with a milk protein intolerance at 3 months old.  We took him off breast milk and started using Alimentum, which has the milk protein already broken down.  He's been on that ever since February 2011.  Most kids with a milk protein intolerance grow out of it by age one, so we're definitely in the "safe zone" to start trying.  He has had no problems with food that has milk cooked in it (scrambled eggs, macaroni, cookies, cake, etc), but other than putting some breast milk in his formula, he hasn't tried milk.  She recommended we start replacing one of his daily bottles with a bottle of PediaSure.  As he tolerates that, we increase the number of PediaSure bottles and decrease the Alimentum bottles.  We can also use a little more of my frozen breast milk.  So far today he's almost finished a PediaSure (vanilla flavor, we have chocolate too!).  We'll keep that up and keep a watchful eye on his stools since his symptom of not tolerating milk is blood in the stool. 

She also indicated that, although now is not the time, he will come off the Prilosec at some point.  That completely surprised me.  I never really considered that he wouldn't need that all his life since he's going to be on other meds long-term.  My surprise seemed to surprise her.  Right now, Prilosec is his only prescription medicine, the other two are over the counter.  We know he will go back on some type of cardiac medicine to help his heart function, but he isn't for now because his junctional rhythm lowers his heart rate and a side effect of those medicines is a lowered heart rate (the combination would be dangerously low).  She, along with Dr. Amy & our speech therapist, recommend a dietary consult.  We had one set up prior to Christmas, but with all the illnesses we had we decided to cancel & reschedule later in Jan.  I need to get that set up so we can have a local resource for helping us adjust from formula to milk products.

She also wanted some blood work done to make sure his body is absorbing all the nutrients he requires.  She asked if he'll be under anesthesia for anything in the next month or so.  Dr. Maisel is very considerate and said that she could wait for labs to be drawn if he's going to be under.  Fortunately he shouldn't have anything like that until his Fontane completion, so unfortunately, he had blood drawn yesterday.  Luckily, the lab tech was good and only had to stick him once.  He screamed at us and tried to get away, but it actually went better than I thought.

Eli & Mommy waiting for the lab tech to draw his blood.  He loved the moveable arms on the chair (until we used one to help hold his legs down).

Before the appointment with Dr. Maisel we took a trip to the PICU and got to see some familiar faces.  Eli was very good and even let a couple of the nurses hold him.  I think it's good for them to see how well he's doing, partly due to their skilled work!  I wish I had gotten one of him with Dr. Maisel.  We met another of Eli's doctors in the hallway, Dr. Heather Bricker.  She was the hospitalist in charge of his care when he was diagnosed with the milk protein intolerance.  She hadn't seen him since last February and was very excited to hear good reports.
Three of our favorites, Brittni, Nicole & Katie.  They were so glad to see him.

Nicole LOVED Eli's cheeks.  He was pretty good about it (I think he's used to people's fascination with those things), but he was getting tired!

Brittni is our all-time favorite nurse at PMCH.  There are several great ones, but she's been with us through a lot of his major events.  She was the nurse who admitted him to PMCH back in January when he got off the helicopter before Mommy & Daddy could get there. She was also his nurse the day of his first surgery and she was still on duty when he was brought back from the OR. We've had her several times, and it seems like whenever something big is happening she's there for us!

After the appointment (and a 3:00 lunch at Fazoli's) we went to a party store so I could buy things for my sister-in-law's baby shower.  I'm only a LITTLE BIT EXCITED about my little niece's upcoming arrival :)  I hope she can keep up with my monsters (I mean boys).

Since Bryan took the day off for the appointment, he was able to take Zachary to school.  Zachary enjoyed that, but still did his "shy" thing right as they were walking in the classroom.  He loves school, his teacher, his friends, but always gets a little shy right as we're entering the classroom.  He'll hang up his coat & start playing just fine (I even have to ask for a bye-bye!), but he doesn't like to walk into a roomful of people.

Speaking of Zachary, he's playing Biddy Ball with the YMCA this year.  They've had two practices so far and have one more before their first game.  I watched the last practice and am eagerly awaiting an actual game!  To say the least, it should be very entertaining.  Adding to the entertainment, Zachary's team coach is Bryan.  I don't know who I'll enjoy watching more...four year olds "playing" basketball or Bryan's frustration!  Team pictures were Wednesday night.  We chose a package with trading cards so we had to include Z's height and weight.  He's 53 lbs and 46 inches tall.  He's two inches from the adult rides at most amusement parks (not that he'll ride them!).  

Time for me to go fix lunch & get ready for therapy.  My wrist is doing very well, just gets stiff if I don't do my exercises.  Thanks for checking in!

1 comment:

  1. Let's get together next time you come to Indy! Glad to hear things are going well. Caleb's birthday is tomorrow, can you believe it?!