Thursday January 15th was a big day for us!
It was the day Cooper finally was having his G Tube (feeding tube through his belly) placed.
The surgery wasn't until 1PM and Cooper couldn't have real food or bottles 8 hours prior to the surgery, but luckily he could have clear liquids until 10AM, which meant apple "oooph" all morning.
When we made it to the hospital,
we checked in and waited to talk to the woman at Admitting.
Then we were sent up to the 4th floor to wait to be called back.
Then we were sent up to the 4th floor to wait to be called back.
We got there and waited a fairly short amount of time.
Then we were brought back into the room to get him changed into a hospital gown, meet the nurses and anesthesiologist that would help the Doctor, and wait to be taken back.
They only allowed 2 people in the room besides the child at a time, so Jeff, my mom, and Jeff's mom all took turns coming back to spend some time with Coops before he went into surgery.
When Jeff came back in, they gave Cooper some "loopy juice"
Don't do drugs kids, even if you look as cute as my son when he is high as a kite.
Then it was time to take him back.
We gave our kisses and hugs, and reluctantly watched them take him away.
Then it was time to wait in the waiting room.
About 25 minutes later they called us back to chat with the surgeon. Her part was done.
She said everything went really well, we will have a class on it in a few weeks so we know how to keep it clean and change the tubing if we need to.
They said it would be an overnight stay just to watch him and make sure everything is working properly, and we would leave the next day.
Then they sent us back out into the waiting room to wait to see Little Man.
A little while later they let Jeff and I go back and see Cooper.
He was not wanting to wake up from anesthetics or leave the poor nurses arms.
So naturally mama took over.
After a while we set up his bed so I could sit there and he could lay on me.
Everyone took turns coming back to see him since we were waiting for a room and they would only allow 2 people to stay in the PACU at a time.
We waited in this area for 4 hours (3 of which Cooper was passed out for) until we finally had a room.
This is when all heck started to break loose.
We get into the room and it would seem we are sharing it.
We have definitely had our share of hospital stays.
We have NEVER had to share a room.
We went to a different hospital than we normally do, and I was not happy about it.
Anyway, there is a tiny love seat couch that will allow both Jeff and I to sleep if we sleep sitting up, and Cooper has a crib bed.
Cooper stayed awake for a little while, then he was crashed on me.
We asked if we could get a regular hospital bed because he is not going to want to sleep in the crib. All he wanted was to be held.
The nurse said she has to check with supervisors because they are strict with needing to have the child be 2 to have the regular bed, but since he was 2 weeks away, she hopes they will let us.
An hour later they bring in the bed.
Which made things a little easier because I would be sleeping in it with Cooper and Jeff could now have the couch/bed that pulls out lengthwise to extend.
Cooper wasn't allowed to eat or drink for 6 hours after he was out of surgery so by 8 PM he was a little ticked off.
We asked if they could find out if he could at least drink something because it had literally been 10 hours since he last drank anything, and the last time he had anything of substance was 24 hours prior.
30 minutes later the nurse comes in with three 4 ounce boxes of apple juice and she said we could give them to him.
So we did. and BOY did that little boy suck those things down!
They decided they were going to do a continuous drip of Coopers formula through his tube, all night long.
I had MAJOR hesitations about this because Cooper is a wild man when he sleeps.
But that is what the doctors wanted to do so we let them try it that night.
That was probably the worst night of sleep in the hospital stay.
Not only was the young girl on the other side of the curtain crying or making noise whenever Cooper wasn't, there were the nurses coming in every few hours,
AND THEY DIDN'T COORDINATE SO BOTH PATIENTS IN THE SAME ROOM WERE SEEN AT THE SAME TIME!!!!
We had different nurses, but the same techs. Yet the techs came in at different times for vitals for both kids in the same room!
*FUMING*
Then there is the fact that I'm not sleeping restfully because I am focused on making sure
1. I don't roll over onto Cooper or his tubes (He has the G tube connected and an IV)
2. I'm worried Cooper will fall over the rails because he has never slept in a big bed before without being in between Jeff and I.
3. I'm subconsciously waiting for any movement and rolling on his part
Then Cooper was wild.
He rolled and was caught in his tubing multiple times.
I had to keep waking up and flipping him over (sometimes I had to flip him twice) after he would get tangled in the tubes.
I had to keep waking up and flipping him over (sometimes I had to flip him twice) after he would get tangled in the tubes.
So by morning, I told nurses I am not comfortable with doing that for feedings because I would never get any sleep due to the fact I would be worried he is choking himself in there.
They said "Ok" and relayed that to the Doctors.
It is now Friday, and we are expecting to go home.
Cooper is handling the tube feeds, and there weren't any issues with the Button.
This morning we also asked for more Apple juice. They said he should only be drinking 2 oz at a time. We told her we were not told that last night and he literally drank 12 oz non stop and didn't have any problems. She said ok and went to see if we could get more juice.
We were told we were waiting on the doctors to speak to the home health company and then the home health company to deliver the equipment so we could go home.
This is when things REALLY started going down hill.
We waited a while until the doctor came in to finish discussing how the feeds would take place since we weren't doing night feeds.
They decided we were going to use a pump for feeds whenever Cooper didn't finish his bottles.
He would have 8 ounce bottles made to 30 calories per ounce to make each bottle 240 calories.
We would give him these bottles 3 - 4 times a day depending on how much else he ate in solids.
(So basically 4 bottles a day since he has such a limited diet at this point and he wouldn't be getting enough nutrition from everything else)
After each feed, if he didn't want to finish his bottle, we would put it through the pump over a designated amount of time depending on the amount of ounces are left.
So now we are waiting for a pump to go home.
That evening we still hadn't heard anything about the pump being delivered.
So we asked our nurse what was going on. We were expecting to go home, per the doctors words before and after the surgery.
They went to find out. They said they hadn't had contact with them yet and are waiting. And we also needed orders from the doctor for how we would be doing the feeds so they could get the right materials. So we would probably have to stay the night and they would be here tomorrow.
We weren't happy about this.
Jeff had to work the next morning and he didn't have any of his work things.
I asked him to stay the night with us and being the great Daddy he is, he stayed.
But first he had to go home and get everything.
He came back later that evening and we stayed the night.
This night we had the room to ourselves. The little girl behind the curtain had been discharged.
However, that still didn't free up any room on our side.
During this time frame, I had been asking to learn how everything was being done, have some hands on experience, and to be taught how to use the machines.
It had now been overnight and all day, going into the next night, and I hadn't been shown anything.
For some reason the nurses didn't want to teach me.
They pushed really hard saying the home health company would teach us.
I kept pushing back saying, " I don't really care if they are going to teach me, I want as much practice as possible, as I will be doing this every day and I have never done this before".
The nurse then said they don't like to teach parents because the machine will be slightly different than the ones they use in the hospital. She said it will be the same brand but just a more compact one.
After a lot of back and forth, she finally agreed to have the night nurse show me after shift change.
I honestly don't understand why it was so hard for this part to be done.
The night nurse was super helpful and made me feel pretty comfortable.
I hadn't even touched Cooper's G tube or been told how much pressure needed to be used when taking the stopper out, or inserting the extension tube.
Having never dealt with this before, I was really nervous.
I'm really glad I had some extra teaching.
After the teaching, we all had a much better night sleep than the previous night.
It is now Saturday.
I woke up to a lovely wet body thanks to Cooper peeing on me in the middle of the night.
Luckily I had packed one extra set of clothes so I was able to wear clean clothes!
We ask about home health and the nurses said that they are going to get in contact with them.
This morning we also had another visit from the Doctor that worked with the surgeon.
He said he doesn't know why we aren't doing Bolus feedings.
I had been wondering the same thing all along. I had been doing research before the surgery and the most common way of feeding that I had seen, was through a bolus.
A bolus is a syringe or cup that is attached to the connector tube and gravity pulls the formula through the connector tube, into the G Tube.
When a bolus was discussed earlier, someone ( we saw SO many people so far), I believe it was the nutritionist who had come in to discuss the new formula ratio, said Cooper was too small to do bolus feedings.
That did not make sense to me, but I relayed that to the doctor.
He didn't know why they said that.
So this Doctor, who is the same Doctor we saw the day before I might add, thinks we should now do Bolus feeds. He decided this is how we were progressing.
I was really confused when he left. The Nurse came in after asking what was going on.
I told her what he said, which confused her too, so she went to go talk with the doctor to figure everything out.
She came back after talking to the doctor and said we were going to do the pump again, and whatever he didn't finish orally, would be put through the pump over the time span of an hour.
Now, I was REALLY confused.
I asked her why we would need to do small numbers of formula through an hour? He typically will drink half a bottle then not want to finish, so that would mean putting 4 ounces over an hour, which is a long time.
I was confused because we were doing 3/4 of a bottle in 45 minutes the night before.
She said that is what the doctor decided.
She said now the orders would be sent to home health and they will be getting in contact to make a delivery.
We waited a few hours and hadn't heard anything, so I went back to the nurses station to touch base and find out what the plan was.
She said she would call her supervisor and find out what was going on.
Then I got a phone call.
It was 4:55 pm.
It was from the home health company.
They weren't sure which items they needed to send.
They didn't know which tubing Cooper had.
She said the orders they received from the Doctor stated Cooper had a G Tube and an NG tube ( a tube that is inserted through the nose and connects to the belly to do feeds).
It also said he was going to use a pump, and do bolus feedings.
I had no idea why they were calling me and not the hospital.
We discussed that Cooper only had a G tube and that as far as I knew we were only using the pump.
She said we needed to figure out what was going on within an hour or the items wouldn't be dropped off until the next day. She told me she would call me back if they got the orders. So I immediately went to the nurse and told her what had happened. She said she would call and find out to ensure we could get out of here.
I called back around 6 pm and the offices were closed.
I was ticked.
I thought for sure we weren't going to go home that night because they weren't going to drop off the materials.
Then after 7 PM, a man comes to our room and says he has a delivery!
WE WERE STOKED!
YAY!! WE WOULD GET TO GO HOME!
He gave me the bags and asked if we had had a teach on the pump.
I told him we were showed by the nurses here how to use the pump the hospital had, but we have not seen or been taught on this machine.
He said ok and left.
I assumed he left to get the home health nurse so they could do the teach.
The hospital nurse came in right after he left and asked if they taught me how to use the machine.
I told her no, and what I told the guy and she said she would go catch him.
She came back and said she couldn't catch him before he hit the elevators so she had to go see what would happen.
I asked her, "What do you mean? They don't send a nurse to do the teaching after the delivery guy dropped off the equipment? "
She said they should have taught me when they dropped it off.
This guy was not someone to teach. He literally was just a delivery guy.
I said, "Ok, but that isn't our fault. This isn't going to make us have to stay another night though, right?"
She said she had to talk to her supervisor and we would know in a bit. It was shift change time and we would be told how we would proceed by the next nurse.
I asked her why any of the nurses here can't just teach us. It looks like the same machine, just smaller.
She said she would ask, but she thinks its a liability to send us home without a teach from the company that supplied the pump.
This is not ok.
After shift change, they sent in one of the nurses to tell me we won't be able to be discharged because it is a liability.
I WAS TICKED!
We would be staying another night that wasn't medically necessary because they couldn't get their communication right with the company.
I told them I am not paying for either of the extra days or nights we have been here due to lack of communication between the doctors, hospital, and home health.
We had already paid up front for the hospital fees for the only night we were supposed to be there.
I told them they needed to get in contact with home health first thing in the morning. It's not ok that we have to stay longer because of this. Home health needs to come back first thing in the morning.
They said they would make sure that happens.
I also told them that we expect one set of vitals to be taken at night and to not have anyone take any more during the night.
Cooper is 100% here unnecessarily and shouldn't have to be woken up.
He is not connected to an IV and is tolerating his feeds and bottles, and we aren't doing overnight feeds, so there is no reason for anyone to be coming in our room tonight.
They agreed.
We have now reached Sunday, Day 4 of an overnight procedure.
The Tech came in at 8 am to take vitals on Cooper.
I asked if the home health company had been contacted. She said she didn't know and she would find out.
The same doctor who had come in the previous three days, came in again this morning.
He said he was so sorry for what had happened.
He said had he known what was going on (Ummm why didn't he know??) he would have gotten involved.
He said there was no reason we should have had to stay.
He said we could have scheduled a teach for a nurse to come out to our home.
Since Cooper isn't using the pump as his only way to feed, it shouldn't have been a problem.
Now I was BEYOND TICKED!
We stayed another night and even the Doctor said it was ridiculous and unnecessary.
(Meanwhile, I might add, Jeff has been driving an hour each way and going to work each extra day we were there)
The Doctor said he was going to make sure we got the teach at home.
I said ok.
After he left the nurse came back in, the same one who was working with us yesterday.
She said it may make things go faster if we were to call the home health company.
She gave me the number and I called them.
After waiting on hold for 8 minutes, someone answered and couldn't find Cooper's information. She put me on hold again, then answered back in another five minutes asking what I was calling about. I told her and she said I needed to be transferred to another line within the company.
She transferred me and I waited, and waited, and waited.
I waited for an hour and 25 minutes.
NO ONE PICKED UP!
As I was on hold I went out to the nurses station and told the nurse they weren't answering and I am pissed.
I am not waiting around all day again.
This is unacceptable.
She said she would call the Case manager.
When I finally hung up because no one was going to answer, I went back to the nurses station.
She said the Case Manager was ticked.
She had been put on hold for 30 minutes.
She said she was going to demand that she speak with whoever was in charge to get things going.
We waited a while longer, then I received a phone call.
It was the woman in charge at the home health company.
She said she had talked to the hospital and someone from their company had contacted me (False) and set up a scheduled teach in the hospital for between 2 and 4 pm.
(It was 10:45 am when I talked to this woman in charge)
I said that is absolutely not true.
I was literally on hold with your company for an hour and a half and no one answered.
I did not speak to anyone, nor agree to a teach at the hospital.
I told her she needed to figure out a way to have the teach scheduled for my home.
She said she would have to try to catch the nurse before they were out for the teach or we would have to wait for her.
I told her that wasn't ok.
She said she would find out and call me back.
I got a call back and she told me the nurse had already been sent out so there was nothing she could do, but we were the first on her schedule for the hospital so we wouldn't have to wait too long.
****LIVID****
So we had to freaking wait for the nurse to come out and do the teach.
My mother in law has worked at the hospital we normally go to for quite some time. I asked her what I needed to do about this situation because clearly this is not ok.
She said I needed to ask to speak to patient relations.
I asked the nurse for this and she was hesitant.
She did bring it in eventually and I called but they weren't even there.
I called my mother in law and she said that is unacceptable. Even on weekends, if someone is ticked enough to be calling, the call is directed to their on-call phone number so someone is reached and things get discussed. I left a message.
During this time, my parents had come out earlier when we thought we were going home.
They were Cooper and my ride since Jeff had our car and was at work since we never planned on staying for FOUR days!
So my poor parents are just waiting in the room with us.
At this point, You are probably thinking, "CLEARLY this has to be the end of the mistakes and issues they could have been through."
But it isn't.
Naturally.
The nurse gets to our room at 2:25.
She was confused why she was there.
I asked her why she was confused. This was supposed to be a pump teach.
She said she wasn't told that this was a teach.
She had no idea what she was doing here.
I said, " Are you kidding me?"
She said no.
She asked where all the equipment was so she could teach me.
I gave her the bags that were delivered and she asked, "where is the white folder?"
I said everything we were given is in here.
She said she doesn't have any of the information on Cooper, his instructions, the pamphlet, any information to be able to do the teach.
She was pretty upset because she had just been to the office and no one told her it was a teach, or gave her information.
At this point, I said, " I'm going to take a lap" and left the room.
I have never in my life been so ready to punch someone, or a wall, from anger.
I went to the nurses station to let her know what was going on.
She asked what that nurse needed. I said I'm not sure but I really need to take a walk.
I also asked to be put in contact with the Administrator on Call because this is not ok.
She said she would help me with that.
So I took a few laps around the floor to calm down.
When I got back to the room, My nurse, and the home health company nurse were figuring things out.
Then we took out the pump.
I kid you not.
IT WAS THE SAME FREAKING PUMP!!
only a more condensed version.
So as the nurse is going through it, I am literally saying, "ok, so now we do this, then this, then ..." because I had already learned it from the nurses here.
She said, "yes, you know what you are doing".
She then left and I waited for my nurse to come in. She said they had the discharge papers ready earlier and all we were waiting on was the teach.
She came back in and said, ok here are your discharge papers
(which were not detailed at all. They just told us what the feed plan was and that we needed to contact the surgeon to set up a follow up, and that the surgeons office would call to set up a class.. redundant. It also said not to submerge Cooper in water until we saw the doctor for a follow up. It didn't have anything about the care or treatment of the actual button, or when to call the doctor, or what to expect. Nothing!)
I asked had we heard about the Administrator on Call. That we wanted to speak with her before we left.
She didn't want to get us in contact with her.
Reluctantly though, she came back with her number.
I asked why she couldn't come see us. she said I would have to call her.
I was so irritated and ready to go home at this point, that I just took the number and we left.
I called her the next day and she said she wished I had spoken with her in the hospital.
She was there and it would have helped more. I told her I had tried and this is the best we could do.
She pushed the information I gave her up, and said I should hear from the Director of Case management about all of this.
I had called these people for 2 reasons.
1. they needed to know how horrible of a stay this was and how we were forced to stay for 4 days when it should have been an overnight surgery. This kind of thing can't happen to patients and their families.
2. I was going to fight like heck to ensure we did not pay a cent for their issues.
We paid up front for the hospital stay and for the time we were supposed to stay.
Had Cooper not been tolerating the feeds, or been there because of medical need, obviously I wouldn't have called. But when three different groups of people can't get their stuff together to discharge a healthy patient, It should not be the patients responsibility to foot the bill.
I also called Patient Relations again the next day after not receiving a call. I left a message because they closed at 3:30, I said I expected a call from them in the morning since this is now my second message.
When she got back to me, she wasn't friendly, or helpful.
She told me that if I were to get a bill, I should pay it. That way there isn't any issues while everything is processed. If it turns out we are compensated, or the people who deal with billing issues decides to reverse the charges, we would be reimbursed.
Yeeeeaahhh... We've heard that before with the Army. Not gonna happen.
I literally was on the phone all day that monday and tuesday.
HOURS.
I kept getting the run-around.
I'm telling you.
This entire stay was terrible and It makes me not want to work with his doctors anymore.
They all work at this hospital, So if anything were to go wrong, we would end up back here.
Anyways,
We are finally discharged.
My parents take Cooper and I home.
We stopped at the store so I could get some groceries since we didn't have any food.
We are literally pulling into my neighborhood when I realize,
I DON'T HAVE KEYS!
Jeff and I took one car there, and it has our house keys on it.
So I try calling him. He was held over at work and I couldn't get a hold of him.
We had to drive 25 minutes to his work.
The area where they keep their cars is locked, and he isn't answering, so I have to call one of his coworkers to come let me in since there is a set of keys in Jeff's car on the garage door opener.
It never ends.
So as you can see,
Like I have said before.
Cooper has a competitive problem.
He always has to push the boundaries.
It has to be a competition for everything medical.
Who can have the most allergies?
Who can have the longest, most terribly communicated hospital stay?
That would be Cooper.
But who could be mad at this adorable face!
"hap-pee"
Loopy juice time!
Loopy Juice!
He would have 8 ounce bottles made to 30 calories per ounce to make each bottle 240 calories.
We would give him these bottles 3 - 4 times a day depending on how much else he ate in solids.
(So basically 4 bottles a day since he has such a limited diet at this point and he wouldn't be getting enough nutrition from everything else)
After each feed, if he didn't want to finish his bottle, we would put it through the pump over a designated amount of time depending on the amount of ounces are left.
So now we are waiting for a pump to go home.
That evening we still hadn't heard anything about the pump being delivered.
So we asked our nurse what was going on. We were expecting to go home, per the doctors words before and after the surgery.
They went to find out. They said they hadn't had contact with them yet and are waiting. And we also needed orders from the doctor for how we would be doing the feeds so they could get the right materials. So we would probably have to stay the night and they would be here tomorrow.
We weren't happy about this.
Jeff had to work the next morning and he didn't have any of his work things.
I asked him to stay the night with us and being the great Daddy he is, he stayed.
But first he had to go home and get everything.
He came back later that evening and we stayed the night.
This night we had the room to ourselves. The little girl behind the curtain had been discharged.
However, that still didn't free up any room on our side.
During this time frame, I had been asking to learn how everything was being done, have some hands on experience, and to be taught how to use the machines.
It had now been overnight and all day, going into the next night, and I hadn't been shown anything.
For some reason the nurses didn't want to teach me.
They pushed really hard saying the home health company would teach us.
I kept pushing back saying, " I don't really care if they are going to teach me, I want as much practice as possible, as I will be doing this every day and I have never done this before".
The nurse then said they don't like to teach parents because the machine will be slightly different than the ones they use in the hospital. She said it will be the same brand but just a more compact one.
After a lot of back and forth, she finally agreed to have the night nurse show me after shift change.
I honestly don't understand why it was so hard for this part to be done.
The night nurse was super helpful and made me feel pretty comfortable.
I hadn't even touched Cooper's G tube or been told how much pressure needed to be used when taking the stopper out, or inserting the extension tube.
Having never dealt with this before, I was really nervous.
I'm really glad I had some extra teaching.
After the teaching, we all had a much better night sleep than the previous night.
It is now Saturday.
I woke up to a lovely wet body thanks to Cooper peeing on me in the middle of the night.
Luckily I had packed one extra set of clothes so I was able to wear clean clothes!
We ask about home health and the nurses said that they are going to get in contact with them.
This morning we also had another visit from the Doctor that worked with the surgeon.
He said he doesn't know why we aren't doing Bolus feedings.
I had been wondering the same thing all along. I had been doing research before the surgery and the most common way of feeding that I had seen, was through a bolus.
A bolus is a syringe or cup that is attached to the connector tube and gravity pulls the formula through the connector tube, into the G Tube.
When a bolus was discussed earlier, someone ( we saw SO many people so far), I believe it was the nutritionist who had come in to discuss the new formula ratio, said Cooper was too small to do bolus feedings.
That did not make sense to me, but I relayed that to the doctor.
He didn't know why they said that.
So this Doctor, who is the same Doctor we saw the day before I might add, thinks we should now do Bolus feeds. He decided this is how we were progressing.
I was really confused when he left. The Nurse came in after asking what was going on.
I told her what he said, which confused her too, so she went to go talk with the doctor to figure everything out.
She came back after talking to the doctor and said we were going to do the pump again, and whatever he didn't finish orally, would be put through the pump over the time span of an hour.
Now, I was REALLY confused.
I asked her why we would need to do small numbers of formula through an hour? He typically will drink half a bottle then not want to finish, so that would mean putting 4 ounces over an hour, which is a long time.
I was confused because we were doing 3/4 of a bottle in 45 minutes the night before.
She said that is what the doctor decided.
She said now the orders would be sent to home health and they will be getting in contact to make a delivery.
We waited a few hours and hadn't heard anything, so I went back to the nurses station to touch base and find out what the plan was.
She said she would call her supervisor and find out what was going on.
Then I got a phone call.
It was 4:55 pm.
It was from the home health company.
They weren't sure which items they needed to send.
They didn't know which tubing Cooper had.
She said the orders they received from the Doctor stated Cooper had a G Tube and an NG tube ( a tube that is inserted through the nose and connects to the belly to do feeds).
It also said he was going to use a pump, and do bolus feedings.
I had no idea why they were calling me and not the hospital.
We discussed that Cooper only had a G tube and that as far as I knew we were only using the pump.
She said we needed to figure out what was going on within an hour or the items wouldn't be dropped off until the next day. She told me she would call me back if they got the orders. So I immediately went to the nurse and told her what had happened. She said she would call and find out to ensure we could get out of here.
I called back around 6 pm and the offices were closed.
I was ticked.
I thought for sure we weren't going to go home that night because they weren't going to drop off the materials.
Then after 7 PM, a man comes to our room and says he has a delivery!
WE WERE STOKED!
YAY!! WE WOULD GET TO GO HOME!
He gave me the bags and asked if we had had a teach on the pump.
I told him we were showed by the nurses here how to use the pump the hospital had, but we have not seen or been taught on this machine.
He said ok and left.
I assumed he left to get the home health nurse so they could do the teach.
The hospital nurse came in right after he left and asked if they taught me how to use the machine.
I told her no, and what I told the guy and she said she would go catch him.
She came back and said she couldn't catch him before he hit the elevators so she had to go see what would happen.
I asked her, "What do you mean? They don't send a nurse to do the teaching after the delivery guy dropped off the equipment? "
She said they should have taught me when they dropped it off.
This guy was not someone to teach. He literally was just a delivery guy.
I said, "Ok, but that isn't our fault. This isn't going to make us have to stay another night though, right?"
She said she had to talk to her supervisor and we would know in a bit. It was shift change time and we would be told how we would proceed by the next nurse.
I asked her why any of the nurses here can't just teach us. It looks like the same machine, just smaller.
She said she would ask, but she thinks its a liability to send us home without a teach from the company that supplied the pump.
This is not ok.
After shift change, they sent in one of the nurses to tell me we won't be able to be discharged because it is a liability.
I WAS TICKED!
We would be staying another night that wasn't medically necessary because they couldn't get their communication right with the company.
I told them I am not paying for either of the extra days or nights we have been here due to lack of communication between the doctors, hospital, and home health.
We had already paid up front for the hospital fees for the only night we were supposed to be there.
I told them they needed to get in contact with home health first thing in the morning. It's not ok that we have to stay longer because of this. Home health needs to come back first thing in the morning.
They said they would make sure that happens.
I also told them that we expect one set of vitals to be taken at night and to not have anyone take any more during the night.
Cooper is 100% here unnecessarily and shouldn't have to be woken up.
He is not connected to an IV and is tolerating his feeds and bottles, and we aren't doing overnight feeds, so there is no reason for anyone to be coming in our room tonight.
They agreed.
We have now reached Sunday, Day 4 of an overnight procedure.
The Tech came in at 8 am to take vitals on Cooper.
I asked if the home health company had been contacted. She said she didn't know and she would find out.
The same doctor who had come in the previous three days, came in again this morning.
He said he was so sorry for what had happened.
He said had he known what was going on (Ummm why didn't he know??) he would have gotten involved.
He said there was no reason we should have had to stay.
He said we could have scheduled a teach for a nurse to come out to our home.
Since Cooper isn't using the pump as his only way to feed, it shouldn't have been a problem.
Now I was BEYOND TICKED!
We stayed another night and even the Doctor said it was ridiculous and unnecessary.
(Meanwhile, I might add, Jeff has been driving an hour each way and going to work each extra day we were there)
The Doctor said he was going to make sure we got the teach at home.
I said ok.
After he left the nurse came back in, the same one who was working with us yesterday.
She said it may make things go faster if we were to call the home health company.
She gave me the number and I called them.
After waiting on hold for 8 minutes, someone answered and couldn't find Cooper's information. She put me on hold again, then answered back in another five minutes asking what I was calling about. I told her and she said I needed to be transferred to another line within the company.
She transferred me and I waited, and waited, and waited.
I waited for an hour and 25 minutes.
NO ONE PICKED UP!
As I was on hold I went out to the nurses station and told the nurse they weren't answering and I am pissed.
I am not waiting around all day again.
This is unacceptable.
She said she would call the Case manager.
When I finally hung up because no one was going to answer, I went back to the nurses station.
She said the Case Manager was ticked.
She had been put on hold for 30 minutes.
She said she was going to demand that she speak with whoever was in charge to get things going.
We waited a while longer, then I received a phone call.
It was the woman in charge at the home health company.
She said she had talked to the hospital and someone from their company had contacted me (False) and set up a scheduled teach in the hospital for between 2 and 4 pm.
(It was 10:45 am when I talked to this woman in charge)
I said that is absolutely not true.
I was literally on hold with your company for an hour and a half and no one answered.
I did not speak to anyone, nor agree to a teach at the hospital.
I told her she needed to figure out a way to have the teach scheduled for my home.
She said she would have to try to catch the nurse before they were out for the teach or we would have to wait for her.
I told her that wasn't ok.
She said she would find out and call me back.
I got a call back and she told me the nurse had already been sent out so there was nothing she could do, but we were the first on her schedule for the hospital so we wouldn't have to wait too long.
****LIVID****
So we had to freaking wait for the nurse to come out and do the teach.
My mother in law has worked at the hospital we normally go to for quite some time. I asked her what I needed to do about this situation because clearly this is not ok.
She said I needed to ask to speak to patient relations.
I asked the nurse for this and she was hesitant.
She did bring it in eventually and I called but they weren't even there.
I called my mother in law and she said that is unacceptable. Even on weekends, if someone is ticked enough to be calling, the call is directed to their on-call phone number so someone is reached and things get discussed. I left a message.
During this time, my parents had come out earlier when we thought we were going home.
They were Cooper and my ride since Jeff had our car and was at work since we never planned on staying for FOUR days!
So my poor parents are just waiting in the room with us.
At this point, You are probably thinking, "CLEARLY this has to be the end of the mistakes and issues they could have been through."
But it isn't.
Naturally.
The nurse gets to our room at 2:25.
She was confused why she was there.
I asked her why she was confused. This was supposed to be a pump teach.
She said she wasn't told that this was a teach.
She had no idea what she was doing here.
I said, " Are you kidding me?"
She said no.
She asked where all the equipment was so she could teach me.
I gave her the bags that were delivered and she asked, "where is the white folder?"
I said everything we were given is in here.
She said she doesn't have any of the information on Cooper, his instructions, the pamphlet, any information to be able to do the teach.
She was pretty upset because she had just been to the office and no one told her it was a teach, or gave her information.
At this point, I said, " I'm going to take a lap" and left the room.
I have never in my life been so ready to punch someone, or a wall, from anger.
I went to the nurses station to let her know what was going on.
She asked what that nurse needed. I said I'm not sure but I really need to take a walk.
I also asked to be put in contact with the Administrator on Call because this is not ok.
She said she would help me with that.
So I took a few laps around the floor to calm down.
When I got back to the room, My nurse, and the home health company nurse were figuring things out.
Then we took out the pump.
I kid you not.
IT WAS THE SAME FREAKING PUMP!!
only a more condensed version.
So as the nurse is going through it, I am literally saying, "ok, so now we do this, then this, then ..." because I had already learned it from the nurses here.
She said, "yes, you know what you are doing".
She then left and I waited for my nurse to come in. She said they had the discharge papers ready earlier and all we were waiting on was the teach.
She came back in and said, ok here are your discharge papers
(which were not detailed at all. They just told us what the feed plan was and that we needed to contact the surgeon to set up a follow up, and that the surgeons office would call to set up a class.. redundant. It also said not to submerge Cooper in water until we saw the doctor for a follow up. It didn't have anything about the care or treatment of the actual button, or when to call the doctor, or what to expect. Nothing!)
I asked had we heard about the Administrator on Call. That we wanted to speak with her before we left.
She didn't want to get us in contact with her.
Reluctantly though, she came back with her number.
I asked why she couldn't come see us. she said I would have to call her.
I was so irritated and ready to go home at this point, that I just took the number and we left.
I called her the next day and she said she wished I had spoken with her in the hospital.
She was there and it would have helped more. I told her I had tried and this is the best we could do.
She pushed the information I gave her up, and said I should hear from the Director of Case management about all of this.
I had called these people for 2 reasons.
1. they needed to know how horrible of a stay this was and how we were forced to stay for 4 days when it should have been an overnight surgery. This kind of thing can't happen to patients and their families.
2. I was going to fight like heck to ensure we did not pay a cent for their issues.
We paid up front for the hospital stay and for the time we were supposed to stay.
Had Cooper not been tolerating the feeds, or been there because of medical need, obviously I wouldn't have called. But when three different groups of people can't get their stuff together to discharge a healthy patient, It should not be the patients responsibility to foot the bill.
I also called Patient Relations again the next day after not receiving a call. I left a message because they closed at 3:30, I said I expected a call from them in the morning since this is now my second message.
When she got back to me, she wasn't friendly, or helpful.
She told me that if I were to get a bill, I should pay it. That way there isn't any issues while everything is processed. If it turns out we are compensated, or the people who deal with billing issues decides to reverse the charges, we would be reimbursed.
Yeeeeaahhh... We've heard that before with the Army. Not gonna happen.
I literally was on the phone all day that monday and tuesday.
HOURS.
I kept getting the run-around.
I'm telling you.
This entire stay was terrible and It makes me not want to work with his doctors anymore.
They all work at this hospital, So if anything were to go wrong, we would end up back here.
Anyways,
We are finally discharged.
My parents take Cooper and I home.
We stopped at the store so I could get some groceries since we didn't have any food.
We are literally pulling into my neighborhood when I realize,
I DON'T HAVE KEYS!
Jeff and I took one car there, and it has our house keys on it.
So I try calling him. He was held over at work and I couldn't get a hold of him.
We had to drive 25 minutes to his work.
The area where they keep their cars is locked, and he isn't answering, so I have to call one of his coworkers to come let me in since there is a set of keys in Jeff's car on the garage door opener.
It never ends.
So as you can see,
Like I have said before.
Cooper has a competitive problem.
He always has to push the boundaries.
It has to be a competition for everything medical.
Who can have the most allergies?
Who can have the longest, most terribly communicated hospital stay?
That would be Cooper.
But who could be mad at this adorable face!
Morning of the surgery
Drinking the last bit of "oooph" he can have
"hap-pee"
He wasn't sure about the elevator
Getting a Pulse-ox
He was insisting on Showing his belly
Playing before surgery
I have surgery.. But first. Let me take a selfie
Loopy juice time!
Loopy Juice!
Loopy Juice
After surgery
ON Oxygen. He was having a hard time staying on the 90s without it.
I wasn't kidding about how small this room was!
In the Playroom on our floor
Loving watching traffic! He saw tons of busses and trucks!
Just taking walks
So happy!
The amount of movies we watched was unreal. It's ridiculous how hard it is to keep a child entertained for 4 days when they are healthy and wanting to run and play!
Playing with toys from the play room
Playing
Finally able to eat. They weren't letting him for sooo long!
Then they weren't going to let us have apples because it wasn't on the Toddler diet...
Well do you carry Carrots, welches fruit snacks, Plain white potatoes/lays? Otherwise The only thing would be able to eat is banana.
Not even kidding. This isn't even when I hung up.
Watching the NFC Championship.
SEAHAWKS
Cooper's Feeding backpack.
It weighs more than he does. Right after this picture he fell backwards.
healing
It's bulk season!
No comments:
Post a Comment