After Aidan's scary-yet-fun (?) ambulance ride to CHOP on Tuesday night, we settled into our room on 5 South and awaited a plan. I swear, that's all we ever do here. Wait for someone to figure out how to help him. And in the end, it's always a patch up/send home job.
Aidan had no problem immediately falling asleep. I, on the other hand, stayed up to panic about work and ponder what the appropriate hour was to text my boss. Finally, I had to reach out and admit that I was here, with no access to my work laptop or phone, and would be missing several important meetings.
I hate this part. Obviously my child is the most important thing in the world to me - but I pride myself on the work that I do, and not giving 100% does not sit well either.
Anyway - what Aidan really needed were IV fluids for hydration and gut rest. Late in the day, we started up Pedialyte, and he finally produced wet diapers. He really seemed to perk up quite a bit.
When we started up the 1/2 Pedialyte/1/2 Elecare mixture, he starting showing signs of a flushed face - but no fever. Odd, and I actually asked several times that his temperature be rechecked because he felt warm to the touch - but no fever was recorded overnight.
He was clingy and moaned a lot in his sleep. But no fever, and no vomiting, so we advanced the feed to full Elecare.
We did get some sleep overnight, despite his discomfort, and when I woke up, I did my usual check of the room. I always double check his feeds and rates and vitals - just to see how he's doing. What I noticed made me instantly sick to my stomach.
Yup. The doctor ordered the wrong formula. The nurse hung the wrong formula. They fed my baby the wrong formula. Formula he's reacted to in the past. This is not okay.
I feel guilty for being asleep at 6am when this was hung. But I can't feel guilty for sleeping. I can't feel guilty for their error, and their lack of quality review.
Aidan is okay. He was uncomfortable and flushed in the face - but he is okay. What if the mistake had been a dairy-based formula? Or a soy-based formula? What if he'd suffered anaphylaxis due to this mistake? It's not okay, and CHOP needs to get it together.
The rest of the day was frustrating and disappointing. The usual CHOP fare. He's not pooping (surprise, surprise) so we're giving Miralax (no results). He's feeling much better now that he's hydrated and is really ready to come home.
The main thing slowing things down is that I spoke to a GI, explained alllllll of our sordid formula history (the neocate drama - the G feed intolerance - the GJ tube change - the ensuing frequent hospitalizations).
It is my genuine belief at this point that he DOES NOT tolerate Elecare Jr. When we give it by mouth or G-Tube, he gets rashes, vomiting, and GI pain (Screaming. So much screaming. Especially at night). When we give it by J-Tube, because we have bypassed the stomach, the symptoms are different - but we get decreased motility (leading to constipation so severe, he ends up hospitalized for cleanout) and pain/discomfort. He's not getting the rashes and vomiting - something about the chemistry of the jejunum vs. the chemistry of the stomach seems to produce a different set of symptoms. But it seems clear to me. Before we started Elecare Jr, do you know how many times he had these lower gut issues? ZERO. It's related. It has to be related. And I think it's the same, whether it's flavored or unflavored. We never had these issues on the well-tolerated unflavored Neocate Jr or Neocate infant (but, interestingly, we did have the same set of symptoms on flavored Neocate Jr and Splash).
The GI I spoke to this morning seemed on board. He said that clearly there was an allergic process in play, and that we needed to investigate the micronutrients in the formula to see what he was reacting to. He even said he knew of a GI in the hospital today that he thought could help. But he never came back.
Instead, he sent someone else - a resident, I think - to tell me that he was in the OR for the rest of the day, but thinks we should follow back up with our own GI in a month or so, and consider seeing an allergist. Sound familiar? It should. It's what we're always told. It's nobody's problem. It's nobody's responsibility. GI thinks Allergy should help. Allergy refers us back to GI. Everyone feels that things are going "generally well" for Aidan. Everyone but Aidan, who's living in pain every day. Aidan, who's dying to eat, but starving to live.
Someone has to help us. Someone has to care. I was hoping we would find someone today. We didn't.
Aidan had no problem immediately falling asleep. I, on the other hand, stayed up to panic about work and ponder what the appropriate hour was to text my boss. Finally, I had to reach out and admit that I was here, with no access to my work laptop or phone, and would be missing several important meetings.
I hate this part. Obviously my child is the most important thing in the world to me - but I pride myself on the work that I do, and not giving 100% does not sit well either.
 |
| Listless boy :( |
Anyway - what Aidan really needed were IV fluids for hydration and gut rest. Late in the day, we started up Pedialyte, and he finally produced wet diapers. He really seemed to perk up quite a bit.
 |
| Toddler Problems: he's a righty. no coloring :( |
When we started up the 1/2 Pedialyte/1/2 Elecare mixture, he starting showing signs of a flushed face - but no fever. Odd, and I actually asked several times that his temperature be rechecked because he felt warm to the touch - but no fever was recorded overnight.
He was clingy and moaned a lot in his sleep. But no fever, and no vomiting, so we advanced the feed to full Elecare.
We did get some sleep overnight, despite his discomfort, and when I woke up, I did my usual check of the room. I always double check his feeds and rates and vitals - just to see how he's doing. What I noticed made me instantly sick to my stomach.
 |
| Elecare Jr. Vanilla. VANILLA. |
I feel guilty for being asleep at 6am when this was hung. But I can't feel guilty for sleeping. I can't feel guilty for their error, and their lack of quality review.
Aidan is okay. He was uncomfortable and flushed in the face - but he is okay. What if the mistake had been a dairy-based formula? Or a soy-based formula? What if he'd suffered anaphylaxis due to this mistake? It's not okay, and CHOP needs to get it together.
The rest of the day was frustrating and disappointing. The usual CHOP fare. He's not pooping (surprise, surprise) so we're giving Miralax (no results). He's feeling much better now that he's hydrated and is really ready to come home.
The main thing slowing things down is that I spoke to a GI, explained alllllll of our sordid formula history (the neocate drama - the G feed intolerance - the GJ tube change - the ensuing frequent hospitalizations).
It is my genuine belief at this point that he DOES NOT tolerate Elecare Jr. When we give it by mouth or G-Tube, he gets rashes, vomiting, and GI pain (Screaming. So much screaming. Especially at night). When we give it by J-Tube, because we have bypassed the stomach, the symptoms are different - but we get decreased motility (leading to constipation so severe, he ends up hospitalized for cleanout) and pain/discomfort. He's not getting the rashes and vomiting - something about the chemistry of the jejunum vs. the chemistry of the stomach seems to produce a different set of symptoms. But it seems clear to me. Before we started Elecare Jr, do you know how many times he had these lower gut issues? ZERO. It's related. It has to be related. And I think it's the same, whether it's flavored or unflavored. We never had these issues on the well-tolerated unflavored Neocate Jr or Neocate infant (but, interestingly, we did have the same set of symptoms on flavored Neocate Jr and Splash).
The GI I spoke to this morning seemed on board. He said that clearly there was an allergic process in play, and that we needed to investigate the micronutrients in the formula to see what he was reacting to. He even said he knew of a GI in the hospital today that he thought could help. But he never came back.
Instead, he sent someone else - a resident, I think - to tell me that he was in the OR for the rest of the day, but thinks we should follow back up with our own GI in a month or so, and consider seeing an allergist. Sound familiar? It should. It's what we're always told. It's nobody's problem. It's nobody's responsibility. GI thinks Allergy should help. Allergy refers us back to GI. Everyone feels that things are going "generally well" for Aidan. Everyone but Aidan, who's living in pain every day. Aidan, who's dying to eat, but starving to live.
Someone has to help us. Someone has to care. I was hoping we would find someone today. We didn't.
For Abby it was the corn in all those products that made her sick, with very similar symptoms. The allergist claim since all the "protein" has been removed it is "impossible" to react to the corn. However, recently a number of Specialists are recognizing that it is the corn despite the lack of proteins. The Magazine Living Without did an article last month where they discussed that elemental formulas are failing many children because of the corn despite the proteins being removed. Drs. really don't want to believe it because ALL elementals have corn, which leaves them with no easy way to help. There is one infant formula called Alimentum Hypoallergenic Formula has the very least amount of corn and many do better with it. 90 percent or better of all enriched products are vitamins grown/derived from corn. Removing corn is not easy. Here is the link to the article about the elemental formulas causing issues in a growing number of children because of the corn(even minus the "proteins") http://www.livingwithout.com/issues/4_30/gmo-ingredients-3611-1.html if the link doesn't work, let me know I will cut and copy it for you.
ReplyDeleteWow this sucks. Could you go to the patient advocate at the hospital and express your extreme disappointment? It's not ok, and especially with a child because kids can tolerate pain, and don't always say when something's hurting.
ReplyDelete