Progress

We have been following up with ENT, pediatric surgery and speech therapy every two weeks since Sutton's discharge. We have also worked with our pediatrician to find a local speech therapist so that once we are no longer frequently visiting SLCH Sutton can continue to advance his eating skills.

While the progress feels painstakingly slow for me, his physicians feel like he is making great strides. He can swallow some purees right now (as long as they're not too thin) and speech gave us the go ahead yesterday to give him some "solids." By that I mean squishing tiny bits of fruit between my fingers so that the "solids" will slide down his throat easily. Since he's still learning how to swallow and coughs pretty much anything besides the purees back out, he can only have the things that would navigate down his throat without a lot of extra work. He is doing so much work as it is. We are so proud of him! I've been told that an oral aversion is not uncommon in kids that have been through similar issues, especially after intubation, and we are so thankful that this is not a battle we have had to fight. He is definitely interested in eating still!

Surgery and the dietician have been helping us to transition from his continuous J tube feeds, which are delivered directly into his small intestine, to bolus G tube feeds, which are large volumes delivered a few times a day into his stomach. Right now we are transitioning which means that Sutton gets much more freedom during his awake hours to move around without being attached to the tube. It also means that this mama is setting up and tearing down feeds six different times throughout the day. The day is pretty well consumed with tube feeds or attempting to eat. But Sutton finally feels a little freedom and normalcy and that's what we want. 

Now he and Cohen get to be like regular brothers - with all the love and wrestling that entails :)

First round of follow up visits

Earlier this week Sutton checked in for his (belated) one year visit. All is well and his pediatrician felt he was progressing along a reasonable timeline, even if we didn't factor in almost 6 weeks in the hospital. Go buddy! At this point he is now nearly pulling to standing and crawling on all fours (versus army crawling). He also walks a bit if you hold his hands. He was not doing these things prior to entering the hospital, so it seems a week or so at home has been good for him.

On Thursday we followed up in St. Louis with plastic surgery, pediatric surgery, ENT, speech therapy and dietary. Overall, it was a good day. Not much to report in the way of changes, but he is making forward progress no matter how small the steps seem sometimes. Also, his sedative/narcotic wean is complete. For these things we are very thankful!

ENT: She just did a basic assessment and feels he is continuing to heal well. We will return in 2 weeks for another fiber optic scope. We are anxious to see this because his level of secretions has decreased and tolerance to coughing (without vomiting) has increased, so we think his sutures may have fallen out finally and some swelling may be going down even more. We are also curious to see his vocal cord function and if his esophagus is constricting even more through the healing process.

Plastic surgery: These are mostly social visits, but we did talk about the possibility that his esophagus may need to be dilated already. She felt this was promising as it indicates good healing, but would not want to do any dilation until about 12 weeks post-op from the esophageal repair. That is nearly 6 weeks out. This was kind of a bummer, as I had hoped we would be progressing back to table food faster than that, but we obviously want to be as safe as possible in maintaining the integrity of the repair.

Dietary and pediatric surgery: They officially gave us an hour a day off of tube feeds by adding more water intake and increasing his hourly rate. Truth be told, we were already taking 30-60 minutes off during bath time. We were hoping for more time off during the day, but since we have tried to move forward and had setbacks so many times they are moving at a slower pace. We will touch base with pediatric surgery again next week over the phone to see how he is tolerating this adjustment and possibly make some more changes. We will visit with them again in 2 weeks to make more changes. We will be in communication with dietary as well with the results of his twice monthly weight checks and how much he is taking in orally.

Speech therapy: Because he still has no feelings of hunger and difficulty managing his secretions and swallowing, speech therapy didn't make any adjustments right now. They encouraged us to let him play in food and make a mess to help keep him interested. This has been hard for me, but Sutton has thoroughly enjoyed it!

We are also currently working with our insurance company to get a home health night nurse for some relief for us. It is very challenging providing 24 hour care and trying to maintain your life and care for your family. With Cohen returning home finally this will become even more of a challenge. Prayers that we could get some help, even just a few nights a week, would be greatly appreciated.

Bottom line: the last week has been challenging, but it's been SO GOOD for all of us to be home.