Thursday, September 2, 2010

Dysphagia Clinic at Primary Children's

Nathan has been seen by the Dysphagia Clinic at Primary Children's since he was 5 months old. Following his open heart surgery Nathan had a very difficult time for a couple of months having too much in his stomach and though he was drinking about an ounce with his cleft palate nurser (bottle), he completely quit and wouldn't have anything to do with oral stimulation. He was refluxing and throwing up several times a day through his nissen and he was in a lot of pain during feedings.

Dr. Molly O'Gorman (Dr. Molly as she calls herself), took Nathan right under her wing. She has been very frank with us about Nathan's problems, but what I really love about her is that she is a mother. She speaks to me from a Mother to Mother standpoint and makes me feel informed and empowered about Nathan's medical decisions. She is a rare jewel of a doctor and I hold her in the same high regards as Dr. Park, Nathan's ENT.

From a g-tube standpoint Nathan is doing quite well. We are going to try to change his G-tube brand to see if it helps the leakage/drainage problem we have been having. With Nathan not having to work so hard to breathe and his heart function getting better they actually had to REDUCE his calories! He is gaining a little too well for his heart to keep up with the work. He is now taking 5 cans of Nutren Jr. a day which totals to be 1200 calories a day. Nathan is weighing in a a whopping 26 lbs and is just shy of 35 inches tall. That puts him in the 5 percentile for his weight and 8 percentile for his height. His overall weight/height ratio (which is what the doctors actually look at to determine correct weight for the child) is 98%. That is Nathan's BEST EVER figure!)

From an eating standpoint... well... yeah. Nathan did chomp down on celery and peaches for Helene (the feeding therapist). He also put Nutella in his mouth and swallowed a little bit. We had considered sending Nathan to Kennedy Krieger or Hershey Penn State for intensive feeding therapy. Both the doctors cautioned that we would not see the results that we hope for because Nathan's feeding problem does not stem from a mental/emotional disorder. It is from SERIOUS physical impairments. She cannot recall a child in her clinic who has had 18 operations alone in their facial area. Only 1 other child at Primary's has had jaw surgery twice for Nathan's diagnosis. They are VERY IMPRESSED with the feeding abilities that Nathan has and pointed out that the muscles we use to eat with have been cut through MANY times on Nathan and they are extremely weak. Asking him to go through that kind of therapy would be like asking me to run a marathon a month after having a c-section. I wouldn't ask it of myself and so I shouldn't expect it of my child. Helene gave some good feeding ideas and then said that Nathan needs to be seen 1x per week from both Early Intervention and the Orem Pediatric Rehab Center.

I wish that Nathan didn't have this G-tube and would just eat. The lessons we've learned as a family in regards to patience is phenomenal! I am grateful, though, that for the first time in 31 months Nathan is STABLE and no more immediate surgical intervention is required. We are very fortunate that feeding is our big issue.

Dr. Molly and Nathan

Helene Taylor (Feeding Therapist) and Nathan

Gotta love the chubby cheeks!

Nathan LOVES his Nacho Cheese Doritos. He won't eat them, but he loves to lick them. He asks for his CHIPS all of the time!


Kyle and Alli said...

I really like that analogy of asking if you could run a marathon after having a C section. You have some great doctors to work with and I was so excited to hear that he munched on celery and ate some nutella!! Little bits of daily workouts for those muscles and lots of positive experiences with food and strong flavors will help, even if it seems like progress is so small! You guys are doing a great job...and the canning in the post below??? WOW!! It is clear you guys have a lot of patience...far more than I could muster for a project like that!

Annie-Staten said...

He is just tooooo cute! His little face is seriously so sweet!! I love it! Helene is our feeding therapist too, and we lover her!
Yes, we are going to the walk on Sept 11! We are excited to meet our blogger friends in person!!! It will be fun to meet you! :)

Dan & Calli Ellinger said...

That is so wonderful that Nathan is doing so well! (Kylan weighs 1/2-1 lb more than Nathan)

ParkerMama said...

How cute can one kid be? Parker sports a g-tube too. :)

Hohmann Family said...

I haven't checked in on you guys for so long that I didn't recognize Nathan! He's grown so much! It sounds like he's learned a lot too. Progress is such a hard thing to measure when you have a special needs child. But the learning is happening and Nathan will eventually get strong enough to do it on his own. It took a full 18 mo. to help Bekah overcome all her eating issues and she doesn't have the physical limitations that Nathan does. He's doing wonderfully and is so lucky to have you as his mom!