Toradol is a miracle drug

We had such an amazing night. Definitely not solid hours of sleep (because we are in a hospital after all), but WAY more sleep than the previous night. More importantly though, because of Toradol, Eden finally got some good rest and had an amazing night. She is definitely still feeling some pain, and moves around very slowly and gets extremely grouchy fast, but overall we have seen huge improvements in her.

First thing this morning she wanted up and out of bed to play with toys. The TV show "Yo Gabba Gabba" is Eden's favorite so Brad got these toys for her online and suprised her with them. She absolutely loves them, especially PLEX the robot who is fortunate enough to get to cuddle with Eden.





Since she was feeling better, we also decided it would be the best thing to wash her hair and give her a sponge bath. Due to all the pain over the last couple days, she has been sweating like crazy and her hair was really nasty. She kept scratching her head and pulling on her hair so I know it was bugging her. Usually I hold her over a sink to wash her hair, but because of the incision in her neck there was no way it would be comfortable for her in that position. So fortunately they have these shower cap things that have the water and shampoo in them. They go on, you rub around for a couple minutes then take it off and towel dry the hair. It worked great, Eden just was a little freaked out by it at first...


We got it over with quickly though and she calmed down as soon as we took it off her head. It actually worked really great! Then we proceeded with the rest of the sponge bath and she was ok with that.

The ENT team came back today to check on things and said everything looks good. She got the drain tube taken out of her neck incision, but they decided to wait until tomorrow to get the chest tube out. She is still pretty swollen in her face and neck area.



Overall the change between today and yesterday has been huge so we are so grateful. We still have a ways to go before she is feeling well, but we are definitely on the right track. She only gets four more doses of the Toradol, so hopefully by the time those are complete she will be feeling well enough that Tylenol will be sufficient.

The plan now will be for the ENT doc to take out the sutures and change Eden's trach on Wednesday and then we will see from there when we can be discharged. Hopefully Thursday or Friday we will be out of here. We can't wait!

In the midst of the storm...

Finally she is resting peacefully and has been for about an hour. This is the longest she has slept since waking up from her anesthesia yesterday and I feel like I'm on pins and needles hoping she doesn't wake up. Recovering from this procedure yesterday has by far been the worst we have experienced. Since the moment the anesthesia started to wear off yesterday she has been extremely upset and in a great amount of pain.

They have continued to give her Precedex which is a sedation medication since she left the operating room yesterday, but this only sedates her enough so she doesn't move around too much and interupt the healing process. Unfortunately, it is not sedating her enough to be unaware of what's going on around her and the pain she is in. It has taken over 24 hours now to figure out what the right "recipe" of pain medications is right for her. Last night they tried morphine, then oxycontin and tylenol, and now they just gave her a new medication Toradol which so far seems to at least allow her to rest a little bit.

I was up with her the entire night standing by her bed helping her hold her thumb in her mouth and her blankie up by her nose like she likes it. Just when I thought she was asleep, I would try to sit down to rest my back and she would wake up crying and trying to find me. It made for an extremely long night, with no sleep at all, but I am willing to do whatever I can to try to help her. Today she is able to hold her thumb in her mouth on her own, but with her other hand she holds tightly onto my finger and doesn't want me to walk away. Now that she is finally sleeping though, it feels so good to be sitting and resting.

She has a cut from right to left along her neck, above the trach site. They had to fix inside of her airway all the way down to the stoma (the hole where the trach goes in) so because the top of the stoma was cut open, they are treating this as though it is a new trach site and the recovery feels like she got a new trach. The worst part, and what doctors say is where the excruciating pain is coming from is the cut in her chest where they took the rib and a half. The ENT doc today was telling me that in adults they sew in a pump to numb the area as the patient heals because the pain is so bad. They obviously can't do this for children because their little bodies can't handle so much medication, but it puts it in perspective as to how much pain she must be experiencing. I have been shedding a lot of tears with her over the past couple days, but I just keep reminding myself that we can make it through this and it's going to be life changing.




There is a plastic drainage tube in both incisions which is causing the dressings over the sites to get pretty nasty. A few hours ago the ENT doc came back to change those dressings, and though it was over with pretty quickly, it was very distressing for Eden.


IVs in both feet which I pray will hold strong because having to get another IV in her would be absolute torture on top of everything else.


As I was sitting holding Eden this afternoon Brad left to grab some lunch and came back with this

As I place it on my shelf at home it was forever be a reminder that we can get through tough times and the best thing I can do for Eden is to hold her and help her feel safe. Though I can't take her pain away, I know that by holding her, or her simply holding my finger, I help her in a way that nobody else can.

We just have to get through these next couple days, which will be rough, but we can do it. To finish the post with some happy pictures, here are a few we took yesterday as we were waiting to begin the surgery.




I just can't wait to see her smile again...

In Surgery

9AM we checked in at the hospital.
11:30AM I held her as she drifted off to sleep, and then I kissed her cheek and laid her on the big metal table, all the while keeping my eyes on her because the one time I looked up at all the scary tools and things around the room I felt like I was going to suffocate due to the tightness in my chest and stomach. She looked so peaceful and beautiful though and I know I was leaving her in good hands.
7PM I am still waiting to hold her in my arms again, or to even see her again for that matter.

Originally we were told it would be 5 to 6 hours for the surgery. We have now been waiting over 7 hours and she is still in there for maybe another hour. We just got to talk to the anesthesiologist who has been in there all day and who is now on her way home. She passed the shift on to the next doctor to finish what she started. Fortunately she stopped to talk to us on her way out and she said Eden has been doing well and breathing pretty good on her own. She said the posterior rib graft was complete and the ENT doc was now working on the anterior graft. She said at some point Eden started to run a pretty high fever so they had to work to bring that down, but that she is doing well now. So we continue to wait for word that the surgery is complete and we will then be able to reunite with our sweet baby again in the intensive care unit.

I want to be with her so badly, but I"m scared to see her and how bad it will be.

Overall, Brad and I have been holding up pretty good. They gave us one of the family rooms in the waiting room area so we at least have some privacy and quiet as we wait. It's nice not having to sit out in the regular waiting room and watch as so many others come and go. We have been trying to keep ourselves distracted and pass the time by watching a couple movies. We were also so happy to have some visitors today (a friend who has a son here in the hospital and my cousin and her family) so that has been a huge help in breaking up the day and taking our minds off what is happening back in the OR. Thank you Dana, Allie and Zach for stopping by to visit with us.

So maybe one more hour to go and we will be able to talk with the ENT and get the full scoop on the surgery, and then we will finally be with our baby again. More updates to come.

Big surgery coming soon!

Today is Tuesday and we are on the countdown to the big airway reconstructive surgery in only two days! We almost had another big setback on Friday after her bronch, but everything is ok and we are scheduled to go forward with the plan for Thursday. It's so weird to feel terrified and sad, and anxious and excited all at the same time. The recovery is going to be rough, and I hate that Eden has to go through these things, but this is going to be life changing and I'm so ready to get through it.

So back to the drama of last Friday... Eden has been under anesthesia more times than I can count, and she has never had a problem with it before, but I guess there's always time for a new "first" with her. After the bronch was completed, I spoke with the ENT doctor and was waiting for the nurses to come get me and let me go in to recovery to see Eden. It seemed to be taking a really long time and I was starting to get a little concerned when the Anesthesia doc came and told me there was a little problem when Eden was starting to wake up. Apparently she began to have bronch spasms and they had to turn her oxygen way up and manually pump her lungs for a while to get her stable. Once she fully woke up, she coughed and they suctioned a ton of junk out of her and her oxygen began to stabilize again.

At that point they let me back in to the recovery room to be with her. She was still needing a lot more oxygen than normal, but she seemed to be doing fine. Unfortunately though, they decided they needed to keep us there for at least a few hours to make sure she was going to be fine. It made for a long afternoon stuck in a small room, but they let us leave the hospital even though she wasn't back down to her baseline amount of oxygen. We left the hospital under the agreement that if she wasn't back to her baseline oxygen by Thursday that they may postpone the surgery again because they didn't want to do an airway surgery if she was volatile.

As an answer to my prayers, fortunately, today she is back to her baseline so I'm so glad she will be going into this surgery at her best, and I'm even more glad that we won't have to postpone this again! I can't wait to get this behind us!

California Farewell Tour - Part 4

The Tide Pools

One afternoon we decided it would be fun to go to the tide pools and find some ocean creatures. It was a beautiful sunny day and so much fun to spend time down at the beach.

Brad helped Eden touch a sea anemone.







I sat Eden down on some rocks to get a picture of her and got the funniest series of shots. Scrolling through about ten pictures I took in a row her facial expressions in the pictures had me laughing out loud. Here's just four of the series and these were taken one right after the other in this exact order.




I'm not sure what the dirty look was all about in picture number three, but I'm glad she got her smile back! :)

Then Brad went out hunting to find some crabs so Eden and I continued to have our photo shoot. Here's my beautiful model walking the runway. Gotta love those skinny legs!








Then our successful hunter returned with two crabs. Eden wasn't too sure what to think and just got that wrinkled nose expression that she makes when she is trying to figure something out.





And that concludes our farewell tour! We had such a fun time out in California and are so glad we were able to squeeze that trip in before his parents move. As always, Brad was an awesome tour guide and it was so fun to relive many of his childhood routines and memories. We are looking forward to all the new adventures to be found out in Tennessee!

California Farewell Tour - Part 3

DISNEYLAND!!

Eden is still way too young to really appreciate Disneyland and the magic of the place, but we went anyway and had such a fun time! Brad spent so much time here growing up and knows the place like the back of his hand so it's always fun to go with him and get all the secrets of the place. It's also really enjoyable to go with brad's brother Jeff who absolutely loves Disneyland so we were glad Brad's parents and Jeff came with us.

We arrived at around 9am and Eden was actually asleep.


By the time we took our little shuttle to the gates though she was awake and trying to figure out where the heck we were. Of course, no matter how many times you have been to Disneyland, you always have to get the picture right inside the gates.



One of Jeff's favorite things at Disneyland is the "Small World" ride because they have a boat for his wheelchair and he loves going through and seeing all the dolls. Eden wasn't so sure at first, but besides the big alligator character next to the boat at one point which scared the heck out her, she was pretty fascinated by it all.




Jeff's other favorite attraction is the Tiki Room where all the birds sing. At one point it gets super loud and there is a deep chant with the beating drums and Eden starting signing "all done" and starting to cry, but once the chanting ended she was a happy camper again.

These pictures are at the Tiki room waiting for the show to start. I don't know what caught Eden's eye, but it had her perplexed. :)




Toon Town



We also took Eden on the Finding Nemo Submarine ride and again, she liked it most the time except when it got pitch black and the music was playing really loud. I could feel her signing "all done" and beginning to climb up on me, but once the fish came back she was content again.



We stopped at the Madhatter Hat Shop and tried on some fun hats. Eden looked so cute in the Mickey ears hat.


Towards the end of the day, the lines were so long for the rides that we were having a hard time keeping her entertained while we waited. Not to mention the fact that she was already a little grouchy because she wouldn't take a nap. I don't know what I was thinking when I assumed she would sleep at some point during the day. There were way more exciting things than sleep for her that day, so no nap!


By about 5pm we were back in the car heading home and before we were out of the parking lot, this adorable girl was out like a light.


So even though we didn't get to do a ton of rides, it was such a fun day! Thanks mom and dad J. for going with us!