Minus 2 Tonsils plus 1 feeding tube equals 2 hellish weeks!

Well Finn had his 2 surgeries on March 9. At 8 am that Monday morning I watched as the OR nurses wheeled my baby away from me and into the operating room. I was a wreck. I couldn't stop sobbing. I was scared for Finn. Scared that when they took him away from us that he wouldn't understand what was going on and that he would be frightened. Scared that the nurses and anaesthesiologist wouldn't be able to calm him if he got worked up....scared that something would go wrong with either surgery.  Scared that Finn wouldn't be the same happy little boy he was before he had these surgeries. In the end both surgeries went perfect. Finn did great. It's everything that followed where things got hard...

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! 

I've lost the battle of the bottle...

I feel defeated. I feel like I have failed. On March 9 Finn will be getting a feeding tube.  Something I have tried to avoid for the past 2 years. But it has been a battle that we keep losing. Finn keeps growing in height but his weight remains the same. Which means he just keeps falling down the growth chart. Finn hasn't gained any weight in a year. He has stayed at 25lbs. No matter what I have tried...no matter how much butter and oil I mix in with his food, no matter how much carnation powder I mix in his bottle...it just hasn't made a difference. I can't keep doing this. I am tired of giving him a bottle...I have been bottle feeding for 3.5 years. I can't spend 25 mins getting him to eat a bottle and only get him to eat 6oz. I can't keep stressing on a daily basis about how Finn only took 14oz of pediasure when the doctors insist that he get at least 20oz. I am tired of worrying about Finn not eating at school, or at his grandparents house, or out in public because he only wants to take a full bottle from me at home.

So I am surrendering. It took me a long time to get to this place. This place of acceptance of the feeding tube. Once I got past the denial of how much Finn actually needs it. I realize that this will be great for our whole family. Finn will finally have a proper nutritious diet. He will finally know what it is like to have a full belly. When he gets sick I won't have to worry about him being properly hydrated or getting meds in him.  My stress level will decrease because I will know he will be getting enough food on a daily basis and anyone can feed him...it won't have to be just me anymore. I made a pact with Finn when we decided to schedule the surgery...I promised him I would not stop feeding him by mouth. Finn actually likes the taste of food...he just doesn't eat enough of it to gain weight. Just because he will have a tube doesn't mean I am going to stop trying to improve his oral motor skills or deny him the taste of food. This I promised to him.

So wish us luck on this next hurdle!

Powerless

I hate feeling powerless. I hate when things are beyond my control. I never considered myself a control freak until I had Finn.

I always thought that if I followed all the instructions...did all the therapies...put my heart, soul, and energy into doing all of those things everything would get better. Not that Finn would suddenly stop having spastic quad cp....but that it would make a big enough difference that people would notice.

I always feel so defeated after our doctors appts. Finn and I try so hard and all I hear is "he still isn't gaining enough weight for us" "he is still really tight after his latest botox injection" "his head control doesn't look that good" "you have to think about what meds he might need in addition to botox"

I go in feeling good. I see changes in Finn...they might not be noticeable to everyone but I see it. And then to be told all of these things that aren't improving frustrates me. I feel powerless...

The future scares the shit out of me. I try not to think about it for too long bc I always end up in tears and having panic attacks bc of how terrified I am. I worry all the time. Then to be told today that he is still tight after botox and might need additional drugs to help with tone. It scared me. Finn is only 3.5 years old...he's only been on botox for a 1.5 years. I thought it would be years and years before we would be having this discussion since there is only so much botox a person can get....but you want to talk about this now?? I immediately think about the future and what this means for Finn down the road.. 

And I don't know the answer and it scares me....again...powerless.

CP Clinic

2 Weeks ago Finn had his first appointment at the CP Clinic here in Columbus. It was a 4 hour doctors appointment. In that time every specialist you could think of came in to evaluate Finn to see how he is growing and developing. Now, I have some experience with this because when Finn first went to his Complex Care appointment, as well as feeding clinic, we had multiple meetings with a handful of specialists at one time and it was all very repetitive and exhausting. But this was the clinic I actually had to fight for Finn to get in to....which is weird because he has CP! It took me close to 2 years to get Finn into this clinic... I wanted him and needed him to get into this clinic bc of the types of specialists that will be seeing him and evaluating him. First we saw the OT and PT. They came into the room and stretched and flipped him in different positions to determine his range of motion. We are very lucky that Finn has great range of motion, and what that basically means is all of Finn's limps can be stretched in ways that the typical person can move. With Finn's high tone and spacticity this could be a problem later down the road, but right now we are still doing good. They recommend that Finn wear a resting hand splint on his right hand b/c his wrist has developed wrong. Hopefully if we can get him this splint it will prevent it from getting any worse.

Next Finn got his hips x-rayed. The Physical Medicine doctor came into the room to tell us that Finn's left hip is slightly out of place. She didn't seem too concerned by it at this point in time, but said we will just have to keep an eye on it. This is why doing Finn's stretches a couple of times a day are so important. When I stretch Finn's hip out the left hip does eventually sit properly, but it could easily get worse if I decide to neglect his daily stretches...which I would never do.

Next we saw a pediatrician who specializes in seeing kids with special needs. I have heard wonderful things about him from my CP mommy friends, so I was really excited to meet him. The first thing he says to me is that he looked at Finn's MRI before he came into the room and that Finn's MRI is "pretty incredible....and not in a good way". He goes on to say that when you see an MRI that has the extent of brain damage that Finn's does, you expect the kid to look/act a certain way, but Finn doesn't. And that's a great thing. He is better than what he "should" be. Just another example of how much of a fighter this little boy is. So the doc, of course, wants me to relive my pregnancy and birth story which is always still incredibly hard for me to talk about. I am in tears and asking this doctor why this happened....why me? why Finn? No one can give me an answer or pinpoint what exactly happened. Then he asks if I saved my placenta. I kind of laugh off that question...no. of course not...why? And he suggests that perhaps a blood clot formed in the placenta, which could explain why blood did not get to certain parts of Finn's brain and why I suffered from hypertension, then it dissolved on its own. Unfortunately there is no way to find out if this is the case since I didn't save the placenta. I currently have 2 doctors reviewing all of mine and Finn's medical records trying to figure out what happened during my pregnancy. This was the first time I had anyone suggest to me that it could have been a blood clot in the placenta. Strange. We got a referral to genealogy to see if they can offer any further explanation. We will probably never know for sure....and every doctor tells me that the odds of this ever happening again is extremely minimal, but that doesn't stop me from being extremely gun shy about ever becoming pregnant again.

Next we saw a speech therapist. This is the one therapy that I don't feel like a complete failure at. This is the therapy that Finn thrives at. OT and PT are harder for him because his body doesn't cooperate as easily as he/we would like, but with speech, it is all cognitive and you can see Finn learning right before your very eyes. The speech therapist would hold out 2 different objects in her hands and ask Finn to point to a specific one. And he was able to answer correctly all the 3 different times she asked him. My heart swelled with pride.

That's the one thing I wish people knew about Cerebral Palsy. Just because a person's body doesn't function "typically" doesn't mean that their mind is broken. A lot of times people see Finn and just assume he can't understand anything that is said to him.  So many times I have had people talk over Finn or completely ignore him all together because they just assume that he can't understand. Finn might not be able to control his body like me and you, but he understands a HUGE amount that is said to him.

Back to reality

Vacation was great. Everyone had so much fun. We made some once in a lifetime memories. Took amazing pictures.  It was the best. But now it's back to reality.  And boy did I have a nice shock back to reality.

Earlier this week, I had a meeting with Finn's new service coordinator. Finn has aged out of the Help Me Grow program and now the Franklin County Board will look after him. With this meeting we basically just discussed where Finn was on the wait list for the waiver program that Ohio offers. There are 2 different levels of waivers...the level 1 waiver gives families up to $5,000 a year to help assist their kids who have a diagnosis. That money can be used for anything that the child needs: adaptive equipment,  adapting your house/car, nursing assistance....Finn is currently 3300 on the wait list and he has been on it since he was 6 months old. The next level waiver is called the IO waiver. This is the big one. The amount of money you get a year depends on how much care the child needs/requires. It can assist families up to $500,000 a year. This waiver is great bc it stays with the person their whole life while they live in the state. Although the drawback is you can't get this level of waiver unless someone dies or moves out of state. Finn is currently 5300 on the wait list for that one.

I was asking the service coordinator what I can use the money for...and she mentions the things I listed above...and I say "well I won't really need to hire nurses for finn". In my mind I'm thinking finn is fine. He's not bedridden,  not hooked up to machines...so why would I need a nurse?  And she responds, "well he's just going to get bigger. When he's 16 years old you will need help lifting him and stuff." And that just kind of shocked me. Like it didn't even occur to me that Finn will get bigger. I mean I hope he continues to grow and get bigger, but I never pictured him as a teenager,  an adult.  Maybe it's bc the past 3 years of my life has not changed...I still change diapers, I still get up in the middle of the night, every night, I still bottle feed and spoon feed, Finn is still immobile. Sometimes I forget that he's 3.5 years old. Some days I think I live in denial...this is just a phase ...that he'll wake up one day and just start walking and talking. Then for me to have to think 10 years into the future and face that our routine may never change is hard.

Now don't get me wrong. I am so in love with Finn. He is my favorite person on the planet. He is the sweetest little boy I know. And he is making great strides in physical and cognitive areas. He amazes me every day. He is the strongest person I know...way stronger than I will ever be.

So it was kind of jarring to have that meeting. Then a few days later I am at Finn's OT appt...discussing what I said earlier.  And she says, "you can use the nurses to be professional babysitters" (since I could never just hire the neighborhood babysitter) "let's say you have more children and you guys want to go to their dance recital or something and don't want to take finn. They would be the ones who could stay at home with him." Wait--what??? Why on earth would I ever want to exclude Finn from a family night? Omg. Just thinking of even considering that puts another crack in my already broken heart. I have accepted the fact that finn will go thru periods of feeling left out at school but I'll be damned if he ever feels that way at home. Not if I can help it.

This was an emotional week for me. Vacation is definitely over.

A very not so scary day 4!

We have been having so much fun that I forgot to blog about day 4 of Finn's wish.  Since we all felt like all we have been doing is running around since we got here, we decided to slow down on thursday.  Finn was given tickets to Mickey's not so scary Halloween party for later that night and we knew we were gunna be out pretty late so we wanted to have a lazy day. Yesterday was the first sunny day we have had since we got in! So we decided to soak up some rays at the GKTW pool. It's such a nice pool that is very wheelchair friendly with a no entry.  We spent all morning getting some sun then we went back to the villa to have lunch. It gave Finn a chance to take a nap. Now Finn hasn't been napping for months and if he does its like only for a 1/2 hour...but yesterday he went down for 2 hours!  Poor little guy is so tired from all the fun we are having!

We dressed Finn up for Mickey's Halloween party... (he was a pirate) and were off. Now maybe it was all the fun we were having...or how exhausted we are from all the fun...but the adults failed epically last night. Our tickets to Mickey's Halloween party was included in Finn's wish and on our tickets it sounded like we couldn't enter the park until 7 last night or we would have to burn one of our hopper passes if we went any earlier. So we didn't get to the magic kingdom until 7....which is when the party started. Then we try to enter and they tell us our tickets are for Friday nights party instead of tonight's party. DOH! It had the date, October 3 on there, but none of us realized it...and all of us read the tickets and directions.  So there finn is all dressed up and no where to go!

Luckily for us Disney has been so amazing this whole week that they let us in for Thursday nights party...but by the time we got in the parade was about to start...we had a hard time finding a place to stand....on top of all that I forgot Finn's cooler that had his pediasure in it so he could drink something...it was just kind of an unorganized night all around for the Sheets/Hines party. But it was fine. We were able to find a spot to see the parade and had a nice spot to watch the fireworks. We even took Finn to a couple of the trick or treat spots. Finn had a great time. He giggled the whole time the parade was going on and was fascinated by the fireworks. We didn't get home until after midnight so I'm glad we took it easy earlier in the day.

The Wizarding World of Harry Potter

There are so many fun activities planned on any given day at GKTW and yesterday morning was horseback riding! Finn got to ride a horse for the first time yesterday and he really liked it! Look at him all smiley! 

Day 3 took us to Universal Studios,  mainly bc I have had the burning desire to go to Harry Potter world since the day it opened. So yesterday was more for me than for Finn (sorry Finn). Ethan had never been to universal before and I could tell he was enjoying himself. I was really grateful my parents were with us bc they were able to watch Finn while ethan and I rode a few rides.  We didn't spend too much time in Universal since we knew there were a ton of things to do and see at HP.

Diagon alley, Hogwarts,  Hogsmead,  Hogwarts Express, Gringotts did NOT disappoint! It was so amazingly real there. I was tickled pink that I was able to have a butter beer while dining at the Leaky Cauldron! Ethan asked for a coke when we were there and our server replied back in her proper British accent,  "no soda products are served in the Wizarding world" and I just thought that was hilarious. I knew I wanted to ride all the Harry potter rides but felt guilty leaving finn while my parents watched him. I knew they would love to see the inside of these amazing structures (like Gringotts and Hogwarts) I got a tip from one of the GKTW volunteers that told me to flash them our pass and GKTW button and tell them you want a tour of the ride. So we did that for both the Gringotts and Hogwarts rides and it was awesome. We got to bypass the line and take our time walking thru the buildings.  My parents were able to see inside these awesome places and then right when we were boarding the ride, my parents would take finn out the exit and then ethan and I would ride.  It was just so amazing how authentic everything was! But I must say the whole time I was there I kept wishing Betsy and Brian were with us. Being that they are huge HP fans I know they would have loved it!

The one thing Universal Studios taught Ethan and I was that we are getting old. We only rode a handful of rides and we are both hurting today. I rode a roller coaster yesterday for the first time in about 8 years. My neck has a little kink in it today. As much as I thought the Hogwarts ride was awesome...it made me a little nauseous.  I found myself wishing the ride would end! I never used to be like that! :( at least I can say I did it, it was fun, now let's go back to the kiddie rides that Finn can ride! My body handles those better!