A little preface.
Last week we were scheduled for Cooper's 3rd scope.
Scheduling things with his doctors seems to be an issue, for so many reasons.
It's ridiculous.
That is where this post begins.
SO! MUCH! RAGE!
Cooper's scope to find out if the current foods he is trialing, are safe for him, has been in the works since May.
MAY.
I'm going to clarify again, in case you didn't get it.
MAY.
We have been trying to have both Cooper's GI (for his allergen food trial scope) and his ENT (there is thought that his residual Laryngomalacia may be having an affect on him still) coordinate and do both of their scopes together because who would want to put there 2 year old under anesthesia more than once if they can help it?
So back in May when we saw both Doctors for their followups (we routinely see all doctors every three months), we discussed doing the scope together.
Both doctors agreed that that would be the best choice.
So we set out to do it.
We contacted both schedulers and they said they were going to work with both of the doctors schedules and try to get this done soon.
We haven't done as many food trials as we normally would have, but we have been DESPERATELY trying to get Cooper to eat the foods orally.
We have been going to weekly feeding therapy since April, and introduced a few new foods that he was not interested in and I couldn't really do anything with some of the ingredients (buckwheat, coconut and pork)
So we adjusted after about a month and a half and chose different foods that were high in calories that we eat on the regular to try to get Cooper interested in them: coconut, chicken, and avocado.
He has refused to eat the chicken and avocado.
We were trying to avoid giving him an out (blended diet through his tube), because we knew, if he knew he would get it any way, there wouldn't be incentive to eat it orally.
So we spent more time with this set of foods trying to push it orally.
Then when he was still refusing it orally, we decided to finally go the blended diet route after offering it to him to eat first.
However, that brought along its own set of issues.
In order to include the amount of food needed daily for the eosinophils to show up on the scope (if allergic), there was a large volume of blended food that has to be pushed with a syringe through his tube.
It also needs to be blended fairly thin, which adds more liquid, and he already has issues tolerating the volume he already was taking.
We also were having issues with getting the correct tubing, which we wound up having to begin with.
It was a MESS.
Then as we were adding more volume to Cooper's intake,
he couldn't handle it, and was throwing up.
So we were adjusting volume of total formula for the day as well as struggling to figure out how to do a blended diet on our own.
Figuring out how to do a blended diet is scary and stressful because if its not done right, too much pressure can be added to his stomach and cause issues.
Having never had to use a 60cc syringe to actually push his formula through the tube because we had always used gravity when we needed to do a smaller amount of formula,
we didn't know how much pressure was needed, how much resistance was normal, and how thick/thin the mixture had to be.
We also figured out that the mixture hardens slightly when left in the syringe, which causes more pressure until that part is released.
We couldn't give him all 5 oz of the blended diet at once just like we don't do an entire formula feed at once.
We did it over a 30 minute period.
So we would leave the syringe filled in the beginning because we were feeding every 5 minutes, which unknowing to us, was adding more pressure as we were giving the feeds because it slightly hardened in the top of the syringe.
All these things I wish we had been taught instead of being thrown into it on our own.
It's stressful trying to figure out if you are doing everything right.
Anyways.
The time frame for the scope normally is every 3ish months, because you need to get the results back from the previous scope so you know if it is safe to add new foods based on if it comes back clean or with a high eosinophilic count, plus you need time to introduce the new foods separately 2 weeks apart, and finally each food needs to be in the system for 6 weeks.
For example:
Previous test time frame week 11-12: Scope
Start of week 1: results
week 1: New food- Grapes
week 2: Grapes
week 3:New food- Strawberries + Grapes
week 4: Strawberries + Grapes
week 5:New food- Chickpeas + Grapes + Strawberries
week 6: Chickpeas + Grapes +Strawberries
week 7: Chickpeas + Grapes +Strawberries
week 8: Chickpeas + Grapes +Strawberries
week 9: Chickpeas + Grapes +Strawberries
week 10: Chickpeas + Grapes +Strawberries
week 11-12: Scope
So if everything had gone right and worked out, we would have had the scope done in beginning of August.
We were waiting on the schedulers to coordinate, and the main surgeon's (GI) scheduler was in charge of this.
I called every few weeks to get an update.
They finally decided it would most likely work September 24.
I was a bit irritated because we needed to make sure we had one more scope in by the end of the year, and this was pushing his regular scope back further and in that time frame we could trial 2 more foods which would help when we go to feeding therapy having a bigger variety of foods to choose from.
But we agreed.
We were told we were still waiting on ENT to confirm.
Every time I called, GI's Scheduler said she was still waiting to hear back, would call again and put pressure on his office for an answer.
The friday before the scope (which was the following Thursday), I still hadn't heard back from GI and she said she still hadn't had an answer, so I decided to call the ENT scheduler.
I was then informed that GI had not been in contact with them in over a month, and they had already said the date was not going to work because he is not in the same hospital as GI that day and has other obligations.
I was furious and I explained the situation and asked what we were supposed to do then if that date won't work?
She asked why this wasn't taken care of when they had the last recorded conversation back in beginning of August.
I told her I had no idea, that I had been contacting GI's scheduler and I had just kept being told that they were waiting on you.
She said that she could see if one of his colleagues would take the case for the scope only (which they apparently NEVER do).
We were told we might be able to make it work a week after the original date we had set but they had to get it approved and then also check with that doctors scheduler, so we would hear back on Monday.
Monday afternoon came around and I hadn't heard back so I called again and had to leave a message.
I hear back Tuesday afternoon
(mind you our original scope is scheduled for 2 days from now at this point)
She says that the other doctor's schedule isn't open so it won't work and we will have to set up another scope date separately.
I was ticked!
At this point, I hadn't heard anything back from the GI scheduler.
She calls me Wednesday, the day before the scope, to say she finally got in contact with them and it just wasn't going to work for this scope, but if we schedule the next one now, we can have it coordinated because 10 weeks is PLENTY of time to get that taken care of.
I about flipped.
CLEARLY 10 WEEKS WILL WORK IN MY FAVOR AS OPPOSED TO THE 4.5 MONTHS THAT YOU HAVE ALREADY SPENT MESSING EVERYTHING UP!
I somewhat yelled at her, as she continued to make up excuses and repeatedly tell me in the most slow paced sentences I have ever heard, for 30 minutes while I tried to wrangle Cooper while we were standing outside of the gym waiting to go in, that it just wasn't going to work, and she will work at making the next scope happen between the two of them.
This of course I repeatedly refused because it is something that our ENT wanted done months ago but agreed to wait to scope together in the next 2 months after seeing him in May so we didn't have to put him under for the same area to be scoped twice.
I told her we would have to schedule it separately because we were not waiting 7 months to have it done, when he wanted it done in 2.
She continued repeating herself until I finally told her I was on a schedule and had to go, and she said she was going to work on making it work between both Doctors for mid December.
(not sure if she was just not listening, or not listening, or possibly not listening when I said we were not going to do that, but who knows. Even if I had asked her if she was not listening before when I said no, she probably wouldn't have been listening.)
I told her go ahead and do what you need to do, and we will contact ENT separately.
Needless to say, that gym session was one of my best sessions yet.
Last week we were scheduled for Cooper's 3rd scope.
Scheduling things with his doctors seems to be an issue, for so many reasons.
It's ridiculous.
That is where this post begins.
SO! MUCH! RAGE!
Cooper's scope to find out if the current foods he is trialing, are safe for him, has been in the works since May.
MAY.
I'm going to clarify again, in case you didn't get it.
MAY.
We have been trying to have both Cooper's GI (for his allergen food trial scope) and his ENT (there is thought that his residual Laryngomalacia may be having an affect on him still) coordinate and do both of their scopes together because who would want to put there 2 year old under anesthesia more than once if they can help it?
So back in May when we saw both Doctors for their followups (we routinely see all doctors every three months), we discussed doing the scope together.
Both doctors agreed that that would be the best choice.
So we set out to do it.
We contacted both schedulers and they said they were going to work with both of the doctors schedules and try to get this done soon.
We haven't done as many food trials as we normally would have, but we have been DESPERATELY trying to get Cooper to eat the foods orally.
We have been going to weekly feeding therapy since April, and introduced a few new foods that he was not interested in and I couldn't really do anything with some of the ingredients (buckwheat, coconut and pork)
So we adjusted after about a month and a half and chose different foods that were high in calories that we eat on the regular to try to get Cooper interested in them: coconut, chicken, and avocado.
He has refused to eat the chicken and avocado.
We were trying to avoid giving him an out (blended diet through his tube), because we knew, if he knew he would get it any way, there wouldn't be incentive to eat it orally.
So we spent more time with this set of foods trying to push it orally.
Then when he was still refusing it orally, we decided to finally go the blended diet route after offering it to him to eat first.
However, that brought along its own set of issues.
In order to include the amount of food needed daily for the eosinophils to show up on the scope (if allergic), there was a large volume of blended food that has to be pushed with a syringe through his tube.
It also needs to be blended fairly thin, which adds more liquid, and he already has issues tolerating the volume he already was taking.
We also were having issues with getting the correct tubing, which we wound up having to begin with.
It was a MESS.
Then as we were adding more volume to Cooper's intake,
he couldn't handle it, and was throwing up.
So we were adjusting volume of total formula for the day as well as struggling to figure out how to do a blended diet on our own.
Figuring out how to do a blended diet is scary and stressful because if its not done right, too much pressure can be added to his stomach and cause issues.
Having never had to use a 60cc syringe to actually push his formula through the tube because we had always used gravity when we needed to do a smaller amount of formula,
we didn't know how much pressure was needed, how much resistance was normal, and how thick/thin the mixture had to be.
We also figured out that the mixture hardens slightly when left in the syringe, which causes more pressure until that part is released.
We couldn't give him all 5 oz of the blended diet at once just like we don't do an entire formula feed at once.
We did it over a 30 minute period.
So we would leave the syringe filled in the beginning because we were feeding every 5 minutes, which unknowing to us, was adding more pressure as we were giving the feeds because it slightly hardened in the top of the syringe.
All these things I wish we had been taught instead of being thrown into it on our own.
It's stressful trying to figure out if you are doing everything right.
Anyways.
The time frame for the scope normally is every 3ish months, because you need to get the results back from the previous scope so you know if it is safe to add new foods based on if it comes back clean or with a high eosinophilic count, plus you need time to introduce the new foods separately 2 weeks apart, and finally each food needs to be in the system for 6 weeks.
For example:
Previous test time frame week 11-12: Scope
Start of week 1: results
week 1: New food- Grapes
week 2: Grapes
week 3:New food- Strawberries + Grapes
week 4: Strawberries + Grapes
week 5:New food- Chickpeas + Grapes + Strawberries
week 6: Chickpeas + Grapes +Strawberries
week 7: Chickpeas + Grapes +Strawberries
week 8: Chickpeas + Grapes +Strawberries
week 9: Chickpeas + Grapes +Strawberries
week 10: Chickpeas + Grapes +Strawberries
week 11-12: Scope
So if everything had gone right and worked out, we would have had the scope done in beginning of August.
We were waiting on the schedulers to coordinate, and the main surgeon's (GI) scheduler was in charge of this.
I called every few weeks to get an update.
They finally decided it would most likely work September 24.
I was a bit irritated because we needed to make sure we had one more scope in by the end of the year, and this was pushing his regular scope back further and in that time frame we could trial 2 more foods which would help when we go to feeding therapy having a bigger variety of foods to choose from.
But we agreed.
We were told we were still waiting on ENT to confirm.
Every time I called, GI's Scheduler said she was still waiting to hear back, would call again and put pressure on his office for an answer.
The friday before the scope (which was the following Thursday), I still hadn't heard back from GI and she said she still hadn't had an answer, so I decided to call the ENT scheduler.
I was then informed that GI had not been in contact with them in over a month, and they had already said the date was not going to work because he is not in the same hospital as GI that day and has other obligations.
I was furious and I explained the situation and asked what we were supposed to do then if that date won't work?
She asked why this wasn't taken care of when they had the last recorded conversation back in beginning of August.
I told her I had no idea, that I had been contacting GI's scheduler and I had just kept being told that they were waiting on you.
She said that she could see if one of his colleagues would take the case for the scope only (which they apparently NEVER do).
We were told we might be able to make it work a week after the original date we had set but they had to get it approved and then also check with that doctors scheduler, so we would hear back on Monday.
Monday afternoon came around and I hadn't heard back so I called again and had to leave a message.
I hear back Tuesday afternoon
(mind you our original scope is scheduled for 2 days from now at this point)
She says that the other doctor's schedule isn't open so it won't work and we will have to set up another scope date separately.
I was ticked!
At this point, I hadn't heard anything back from the GI scheduler.
She calls me Wednesday, the day before the scope, to say she finally got in contact with them and it just wasn't going to work for this scope, but if we schedule the next one now, we can have it coordinated because 10 weeks is PLENTY of time to get that taken care of.
I about flipped.
CLEARLY 10 WEEKS WILL WORK IN MY FAVOR AS OPPOSED TO THE 4.5 MONTHS THAT YOU HAVE ALREADY SPENT MESSING EVERYTHING UP!
I somewhat yelled at her, as she continued to make up excuses and repeatedly tell me in the most slow paced sentences I have ever heard, for 30 minutes while I tried to wrangle Cooper while we were standing outside of the gym waiting to go in, that it just wasn't going to work, and she will work at making the next scope happen between the two of them.
This of course I repeatedly refused because it is something that our ENT wanted done months ago but agreed to wait to scope together in the next 2 months after seeing him in May so we didn't have to put him under for the same area to be scoped twice.
I told her we would have to schedule it separately because we were not waiting 7 months to have it done, when he wanted it done in 2.
She continued repeating herself until I finally told her I was on a schedule and had to go, and she said she was going to work on making it work between both Doctors for mid December.
(not sure if she was just not listening, or not listening, or possibly not listening when I said we were not going to do that, but who knows. Even if I had asked her if she was not listening before when I said no, she probably wouldn't have been listening.)
I told her go ahead and do what you need to do, and we will contact ENT separately.
Needless to say, that gym session was one of my best sessions yet.
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