Finn was sent to the ENT floor for recovery. We spent the next 2 days there. Finn was miserable when he woke up. He was in so much pain. You could just tell he was so confused as to what just happened to him. It was heartbreaking. Thankfully he was on some pretty strong pain killers. The ENT surgeons came to check on him a few hours after to surgery to tell us that we need to start trying to get Finn to eat/drink something. It is important to keep his throat lubricated to help with healing and with pain. As I expected, Finn was just not interested. Who could blame him? I knew he would act like that....that was why I decided to get the feeding tube at the same time. So at least I can keep him hydrated if he still refused to drink or eat anything. But what I did not know was that we could not use the feeding tube at all for the first 24 hours. OK, no big deal...he still has his IV in him. So he can get fluids and his meds thru his IV. At around 5pm I start asking the nurses about getting Finn his Topamax (seizure meds) since it has been 12 hours since his last dose. She comes back and tells me that they do not have a form of Topamax that they can give him thru an IV and that we might have to look at giving him a different anti-seizure med. This was not OK with me. Finn is used to Topamax...we know how he does on it...and I don't want to switch seizure medications for this short hospital stay just because they don't have an IV form. I wanted to speak to someone from Pediatric Surgery (who was in charge of checking on his gtube) to see if we could use the tube for just administering his medications. It wasn't until 8:45pm that we got clearance from Pediatric Surgery to use the tube for his Topamax....and no one from that floor had even come up to check on Finn at that point. It had been 12 hours since his gtube surgery...we had seen countless ENT doctors/surgeons/nurses...but no one from Pediatric Surgery...
We made it thru the first night ok. It is impossible to sleep at a hospital. nurses were coming in every 2 hours it felt like to either check vitals or administer pain meds. Poor Finn would finally fall asleep and then someone would wake him up. Or he would finally fall asleep only to be woken up a few hours later screaming in pain. It was so hard to watch him go thru all of that. Tuesday during the day Finn seemed to be in good spirits. He was talking to us and even was able to eat 1/4 cup of jello. Throughout the day I kept asking the ENT nurses about when someone from Pediatric Surgery would come up and check on Finn's gtube site. His bandages still had not been changed and we haven't spoken to anyone about it! I was getting pissed. The nurses kept saying they were paging the docs on that floor but couldn't get anyone to respond. It wasn't until 6pm that night that we saw someone from Pediatric Surgery. She came in...looked at Finn's site....changed his bandages and told us everything looked good. She then proceeds to tell us that we could be discharged tonight if we wanted to. Umm...excuse me?! How do you think we are ready to be discharged?!?! Finn still isn't eating enough by mouth to be discharged by ENT standards and we haven't even used the tube for feeds yet! So we don't know if he can even tolerate feeds yet! I was so livid when they said we could be discharged. I told them absolutely not. We were not leaving. So they said that Finn could start eating via tube that night starting at 9pm. Finn tolerated the first feed pretty well. They gave him 8 ounces in like 45 mins. We thought things were going pretty well...until around midnight. Finn's fever spiked to 102.8 and he started vomiting. It was pretty scary....and I kept thinking about how they wanted to discharge us just a few hours earlier!! Finn was able to settle down and fall back asleep around 3 am. His fever started to come down and we decided to try to feed him again around 5 am. He tolerated that 8 ounce feed just fine. The next morning Finn's temperature continued to be normal and he was able to eat another 8 ounce feed at 8 am just fine.
We were told we were going to be able to be discharged at noon on Wednesday. But before we could leave Ethan and I had to attend a class on how to care for the gtube. They made us go together and leave Finn alone with an early intervention specialist. Something I wasn't thrilled about. Finn didn't have a great night and the last thing I wanted to do was leave him for a hour. What if something happened? What if I missed the Pediatric Surgery doctor when I still had questions for him? But it was very important for us to attend this class and since they were adamant that Ethan and I had to go together, we left Finn. Our gtube class was fine. Ethan and I left there feeling confident that we could care for it and clean it properly. When we got back to the room Finn was smiling and having a good time with the early intervention specialist. Noon came and went without us being discharged. According to the ENT nurse, Pediatric Surgery had not decided on discharge plans for us yet. She insisted she kept calling them and checking on their progress but was not given a phone call back. So we stayed at the hospital. Ethan and I were able to practice giving Finn feeds thru the gtube and even got to change the bandage with success. FINALLY at 5pm Pediatric surgery was able to throw together a discharge plan for us. Basically the discharge instructions told us to: use gtube for feeds, eventually getting Finn to consume 40 ounces of Pediasure and 100ml of water, keep an eye on the drainage coming from the site (should not be more than a quarter in size on the gauze), if we see the colors red, yellow, or green oozing from the site we should call the doctor. That was it....those were the only instructions we were given about the gtube....
The next 2 weeks were awful. Finn was in so much pain. We kept him medicated with the strong pain killers the next 5 days. Finn continued to refuse eating anything by mouth. He threw up about once a day after being fed thru the gtube, Ethan and I were setting our alarms in the middle of the night to administer pain meds when Finn was asleep. No one was getting good sleep. Then on the Saturday after we were discharged Finn's gtube site began draining way more than they told us was normal. I panicked. I called the pediatric surgery on call doctor who told me that this was normal. I was just to clean the site more often and change the bandages when it gets really wet from the drainage. Alright. That I could do. This was normal apparently. I wish someone told me this. So my panic levels came down. A couple of hours later I check Finn's site and now it is bleeding! I start to freak out again! I wasn't supposed to see the color red! I call the on call doctor again...who very nonchalantly told me that bleeding was normal. Just put pressure on the site. I told him I was not going to put pressure on it bc its already tender and there is no good way to actually put pressure on it! That's when he tells me that if I 'wanted to waste my time and bring him down here' he would look at it. I start to cry. I am on no sleep and I feel like he is totally disregarding my concern. My discharge plans were vague, Finn isn't tolerating all of his feeds, and I am so frustrated! I hang up. I decided that I would just keep an eye on it...deal with it myself until I could speak to his actual surgeon on Monday. Well it did stop bleeding...the drainage started to decrease...and things started to look better. Now I had to determine why Finn was vomiting at least once a day! I was trying to feed him the same about of food he was taking by bottle before the surgery. But for some reason he was not tolerating it.
Finally Friday came! We got to see Finn's gtube surgeon. He was confused as to why we had this appointment scheduled bc usually he only sees patients 4 weeks post surgery...not 2 weeks post surgery. Then I was telling him about our terrible hospital stay. How pediatric surgery ignored Finn, how we weren't given clear enough discharge instructions, the rude on call doctor...everything. Well, our surgeon was visibly upset. One, we were not given the correct instructions on how to care for his gtube site. In the hospital we were told to leave the tube extender in the gtube hole in hopes to stabilize the hole. However, this was wrong. We should have taken the extender off when we weren't using it. It was actually making his hole bigger! I was pissed when I heard this! I knew Finn was bleeding those couple of days bc he was accidentally pulling on the tube extender! Then the surgeon tells me that he specifically requested that Finn be put on the pediatric surgery floor...not ENT! When I heard this I was fuming! I had been saying all along I felt that pediatric surgery neglected us bc we were on a different floor...and low and behold I was right! Who the hell messed up?! I am so mad! Bc of this mix up we weren't given the proper guidance on how to care for this new gtube and how to introduce food to Finn again. Luckily, our surgeon was awesome and very patient with us and walked us thru how we should go about feeds with Finn. It turns out we were over feeding him. Apparently Finn's tummy can only hold 8 ounces of food. Information that would have been very useful!!
I have only had great positive experiences at Children's hospital up until this point. I am very disappointed in the way things were handled. I have filled out 2 different surveys letting them know how upset I am with the way things were handled....and how I feel they are not good at overseeing patients who are being cared by more than one speciality. The gtube continues to give me grief. Finn has actually decreased the amount of food he is eating. He still refuses to take anything by mouth. I keep offering him stuff every day. Some days I can get him to take a few bites...other days he gets fed only thru the tube. I am hoping that things will start to improve...its only been 3 weeks since his surgery. Finn has always taken a little bit longer to process things. Maybe his throat is still bothering him...maybe he is afraid to swallow anything because he remembers the pain...who knows. As of right now I feel like Finn was doing so much better before we had these surgeries!
