Reading Up

Since Shelby's p-flap surgery is sneaking up on us, I have been trying to do my homework and reading some other families' posts regarding their experiences. Here is one that was just posted about her child's surgery. I am so NOT excited about this next adventure :(

Hi all,well, Monday was our son's p-flap. We have had a trying time from the minute he was brought out of anesthesia to his first hours on the floor. I find it a little theraputic to write on here so I hope this helps those going through this in the future...When he was coming out of the surgery he stopped breathing and had to be put back under very quickly to have the breathing tube reinserted and it even gave the c.n.a. as she says a "run for her money." He had a difficult time breathing for several hours post op and we were in the recovery floor for almost four hours.

The next 24 hours were a nightmare as we somehow ended up on a "short stay floor" where the nurses were less than familar with our surgery. They were used to transitioning kids out in 24 hours or less and started trying to only push oral pain meds despite the docs and my telling them no. Even the charge nurse was calling our doc directly saying things like "well, with these orders you realize your families could be here for days." When she told me she said this to the doctor I was flabergasted! I just looked at her and said YES we know, knew we would be here for the better part of a week.

So now for hours he had been spitting out most of his pain meds that I was asked to give him orally. He finally got some comfort Tuesday afternoon with the correct pain meds b/c a resident was smart enough to cut an oral med order. So he got some IV morphine and started to really rest. Then late that night his IV went bad. They removed it before 9pm and we waited until midnight to get a new one.. Now keep in mind I'm not a patient or nice person when even waiting to long at a restaurant. But it was like fighting underwater trying to get my point across that our son had just gone almost a whole day with bad pain management and then hours with no fluids or IV pain meds again - ugh!

Finally I started telling them how ticked I was and their response was that he was drooling and his vitals were fine so he was o.k. - so what, they were waiting for him to literally crash before they cared?Needless to say I started to voice my opinion. Keep in mind the hospital is under flu restrictions for visitors so it is literally just my husband and I that are allowed up to his room at all. So it has been more than exhausting to say the least. I went home Wed to shower and see my other children. When I finally got out of the hospital and ran through the events in my mind I was getting more upset.

Fast forward to yesterday, Thursday. Our son is finally getting the care he should have gotten the first hours post op. I was able to articulate my story to hospital staff that claim they can help fix this in the future. And I tried to explain that we hired our doctor for a reason and to be told by nurses they were questioning his orders was ridiculous! If that happens do it behind the scenes, listen to us the parents and don't put us in the middle.

Be aware those going through this that the staff is not used to this surgery. Most nurses kept comparing this to a tonsilectomy and our docs were ticked when I told them this. One doc told me there is nothing similar and he was fuming. Be aware that you have to tell the staff up front you realize this is a long recovery and you don't plan to rush it at all. Day one post op is literally just a day of managing pain and that is it. I just thought the doctor's words and orders would be enough for them but apparently it wasn't. We have had nurses every day tweaking the orders to how they think things should go - ie let's just try and stretch the pain meds to get him home faster. Hello, how is he going to want to eat or drink with more pain? They just do not get it.

Our son wanted to try and eat and drink on Tuesday after surgery. B/c his pain was not under control he screamed when trying to get anything down. Since then he has been terrified to try to eat or drink until last night when my husband got him to eat. We literally wheeled him down to the hospital cafeteria just so he could smell food to try and encourage him a little. It took the staff until Thursday to realize he isn't getting any oral meds down b/c he is either choking or spitting them out so he finally got supposotory (spell?) tylenol.

I can't believe this happened to us at the hospital that is supposed to be one of the best in the country. And I can't believe nurses would question a doctor that is the head of his department, a known specialist in this area and one that also runs the volunteer program at the Shriners here in town for cleft kids.

Bottom line our son seemed to be turning a corner last night - wanting to eat but cautious to do it while super sedated with morphine. His surgery was Monday and we just hope he can manage to drink enough to come home today, Friday. It has been exhausting on me to spend three sleepness nights there and on our kids here that miss Mommy and can't visit their little brother at all. But we're still moving forward and thankful that this hopefully will change our son's speech for the best.

I want him home and comfortable here but am not too anxious as I'm afraid he might be in more pain and stop drinking or eating. It is really a balancing act that we have had to micro manage every minute of every day and night. Thanks for letting me vent here it really is helpful. Now I'm just waiting to get the kids on the bus so I can get up there with my husband and see how our little guy is doing today.