Ethan is in bed recovering from a nasty cold. However, we know you all want to know the details of our therapy session with "Blue Balloon". So we will let little man sleep while we fill you in on what transpired.
We met at the facility and had packed most of Ethan's menu in his lunch pail to bring along a proper cross-section of his food intake. Our lengthy food journal was in tow and we were prepared to get down to business. Ethan was having a light eating day so far as he had puked in the morning and didn't want much to drink after that. He was only at 7 ounces by 3:30 and didn't want to take any sippy before going to the appointment.
We were greeted by Jennifer the SLP and escorted into the therapy playroom where she proceeded to ask us questions about Ethan's history (while having Allison's assessment report in hand). We explained that Ethan was born with a severe mitochondrial disorder and that it was diagnosed as reversible. We explained what this means for Ethan, that he was severe and had these issues, but now he's becoming stronger and has stabilized. Ethan played while we filled her in on Ethan. Kora then joined us to talk about Ethan, she also brought along her student helper who was taking notes. Jennifer told us that there was another SLP in the building more experience working in Pediatrics, so she was going to bring her in as well for some ideas.
With Jennifer and Kora in the room the conversations were focused on what Ethan has been doing and what changed to bring us to Blue Balloon. We noted that Ethan had eaten well since our initial tube wean in April and it was only a few weeks ago that there seemed to be a significant regression. After continuing our story, Jennifer excused herself to go find Sara the other SLP. Kora continued to play with Ethan showing him how to activate the self propelled turtle toy in the room.
After a few moments Jennifer and Sara returned. "I have filled Sara in on Ethan's history" she said, "and I think she has some questions for you." Sara introduced herself and shook our hands. She then looked at us with what seemed like very forced and not at all genuine positivity. She asked very poignantly about Ethan's medical tests and their outcomes. We repeated the information of his medical testing consisting of one study done at one month showing a delayed swallow and a small amount of aspiration, the second at 6 months old which was entirely inconclusive as Ethan was just not in the mood to eat barium solution. She then asked "who cleared him to start feeding orally?" - A fair question - "No one has ever medically cleared him to eat, although clinically he's been cleared to continue" I muttered. Suddenly, clouds began to fill the room. A storm started to brew.
Sara went on to say, "Sometimes as children grow and develop, they become cognitive of how their body is feeling. Sometimes they stop eating because they are trying to tell you that they are experiencing discomfort in either their esophagus or their GI track." -Leeanne asked, " He has been eating almost his entire calorie requirement to maintain weight for 5 months and has never been sick, shown no discomfort, no vomiting, and no gagging and just one day stops eating as much because he's now suddenly become aware that there may be a physiological issue? " Sara then replied with an air of insincerity "That's a good question, sometimes when children get older they are able to say no." Leeanne responded. "It seems weird that he would just do a 180. To me it seems like it would be more of a sensory issue with him."
Silence filled the room. Sara and Jennifer conferred for a moment using only their eyes. Jennifer continued by saying "We don't feel that it is safe for Ethan to continue to take food by mouth since Ethan has had no medical clearance and only clinical observation. There is no way to see from the outside what is happening in Ethan's body. We would suggest that you schedule both another swallow study and and upper GI exam and ensure that there are no physiological reasons for Ethan's regression before we begin treatment." Before the silence could come rushing back into the room I added "are you certain that these tests are necessary as they can take 4 to 8 months to schedule, welcome to free health care, then even if we do get one set up, Ethan may simply have no interest in eating during the 30 minute window we have to do the test? Sara responded "we don't feel comfortable treating him until he's been cleared by both these tests." - at this point I should note that Sara comes to us from the US where tests like these don't have as long a waiting period. They suggested that Ethan should stop all oral feeds immediately until these tests are administered and cleared medically. They indicated that Ethan could come to OT sessions with Kora to work on play skills, however they will be doing nothing with food. (Just what we always wanted to pay someone $125 to play with our child with NO food for 50 minutes).
Since the three therapists now realized they had shattered all our hope and aspiration that this visit would result in steps forward, Kora decided to leave us with an exercise. She borrowed Jennifer's person and showed us some joint compression techniques. She didn't mention what it would do or why we should do it, she just showed us something for our troubles, too bad Ethan doesn't stay still long enough to compress his entire body one part at a time. We left with Kora saying that she will be on vacation for a few weeks but would like to set up a few therapy sessions which they would call us with a few session times if we decided to have them.
Ethan was tube fed on the way home as he still did not want his sippy.
When we arrived home there was a lot to discuss and we had only a few minutes before Leeanne was off to dinner with some friends. Basically, I was feeling more defeated than ever and came across like a total nut job. I was so worried that these people had now told me that by feeding my son I was severely endangering him. In addition, They were very concerned that he may not be taking enough nutrition (based only on the numbers). With these two things in mind I was focused now on "Shawn, you can't feed Ethan or you might kill him" and "Shawn, you better make sure you feed him 900 calories or you could be harming him". That's all I could think. Leeanne on the other hand was much more level headed. She realized, as with many other things, advice needs to be taken with a grain of salt. She tried to remind me that Ethan has been eating perfectly well for months and that he obviously doesn't need 900 calories (since his maintenance level is running around 470) but I couldn't let anything convince me otherwise. Sorry again to my wife, I can spiral downward pretty quickly and need some time to digest and bounce back from experiences like this.
In summary, we didn't get the answers or guidance we anticipated from Blue Balloon. We do understand that they need to protect their liability and make sure that they are comfortable with providing Ethan therapy. We just wished that this was discussed in the first assessment and we didn't have to pay for basically a second assessment with the same people.
The next day, it just so happens that our community feeding team were scheduled to join us, as Ethan has started a cold, which this time has made him vomit as soon as food reaches his belly, he was home with Leeanne, puking and coughing all over her! They met with Leeanne in the morning however Ethan was snoozing. Lee didn't mention anything about our visit to Blue Balloon but did suggest that a little bird had told us we should get a swallow study done before continuing to feed Ethan. She also discussed the sudden change in Ethan's food intake. They weren't surprised by the decrease in intake as there had been a lot of changes happening and it is very common with children who have been tube fed to have significant set backs now and then. They took the stance that at this stage, any attempt at a swallow study could be detrimental to his progress as it would involve strapping him into another X-ray machine and force feed him barium which would be very traumatizing for him. They also noted that the wait is at least 6 months and because Ethan is doing so well clinically, they may not take him anyway. Not that we're opinion shopping or anything, but it certainly seems odd that there is such a disparity between the two opinions.
After the feeding ladies finished up, they gave us some fun things to try with Ethan and reminded us to keep offering foods but never force anything. Leeanne had one more thing to do before this whole fiasco would be done. Lee took Ethan in for a check at the hospital clinic which included an impromptu weigh in. Lynn (our dietician) set the scale, Ethan was stripped down and propped in the seat. A moment passed as the scale took its reading. 21.8 ounces? Really? He's gained 1 pound in 18 days! Thats Crazy! based on our slight change in his feeding, he's probably up to about 550 calories which, although much less than 900, has still created one pound of mass in our little guy. He has gained twice the amount that is usually gained in the average child over 18 days. Well dad, you missed the mark on this one again. Guess you don't need to stuff him full of food just yet.
With the news from the clinic and the feeding ladies, we discussed again how to proceed. Here's the plan (as it stands). We're going to try out Blue Balloon for their OT services on a probationary basis for a few weeks, we will not talk about food, but there may be some sensory techniques they can offer. If we don't get anything significant then we'll explore other avenues. Secondly, we're going to continue to feed Ethan by mouth any time he is willing to accept it. We will supplement his intake up to 22 ounces per day to make sure he gets enough calories for Ethan's specific needs (which appear much less than the average). Finally, we're not going to put Ethan through any additional tests and instead move forward and explore the sensory side of eating with him.
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