Stint Removal

So since my last post a week ago, we have been to Denver and back so that obviously means I have lots to update! I must first start off by saying I'm getting really tired of that drive, and all these CO trips are starting to blend together! I shouldn't start complaining now though because it's nowhere near from being over yet.

We drove out to Colorado on Saturday and spent the day with Brad's brother Greg and his family. Sunday we were able to attend sweet little Madelyn's baby blessing which was such a special opportunity. She is such a beautiful little baby, and has a sweet spirit that has added so much to their home, and to our whole family. We love her so much and are so grateful we were able to be there with Greg, Steph and their kids on this special day.

Monday morning we checked in to the hospital around 10am with the procedure scheduled to start around 12. Unfortunately, we were not surprised to find out they were running behind in the operating rooms and we wouldn't be going in until around 2pm. The procedure itself went great though and only last about 45 minutes.

The doctor reopened about half of the incision in Eden's neck, cut the stitches holding the stint in place, pulled the stint out through her mouth, took a bunch of pictures, and then stitched her incision back up. Whew... At this point, because the stint has been in place for a few weeks, the airway looks nice and open and the healing of the grafts has begun. The doctor said he was really happy with the way it looked so far. Some granulation tissue has started to form in the new airway, so Eden is now on a few different medications to try to make the tissue go away. Her next bronchoscopy is next Thursday the 7th so he will be taking another look to see how the healing is going and if the granulation tissue is going away.

Once the procedure was done they moved us to the general pediatric unit where we would have to stay overnight for observation. The night was pretty uneventful and we were actually able to get pretty good sleep which is always an unexpected bonus in a hospital. Tuesday morning we were discharged and we hit the road back home to Albuquerque. It was a whirlwind weekend, but it all went well and we are happy to be home for the time being.

We are anxious for what's to come and hope that next week will also bring good news. The plan at this point is really to just take one bronch at a time and see how the airway is healing. If it looks like it is going to stay open and heal like it's supposed to, the doctor plans to then downsize the trach and start the process of decanulation (removing the trach all together). It is a process though, and being dependent on oxygen will definitely slow that process down. We are just so grateful to feel like we are progressing though and moving toward that goal. We also continue to look forward to the time when we will be able to hear Eden's voice. It hasn't come yet, but possibly when the trach gets downsized. We don't know yet at this point, but look forward to that surprise somewhere down the line.

We just can't express enough how grateful we are for all the love and support that we have received. We love getting cute little "Get Well" cards in the mail for Eden and the fun little toys and gifts that people have sent for her as good hospital distraction toys. Thank you all so very much - it really helps to boost our spirits knowing that we have so much love and support.

Despite all the complications and setbacks we have experienced, we truely are so very blessed.

Confirmed...

It's official, Eden has/had Rotavirus. I wish someone would have told me a while ago that there was a vaccination to avoid this. Oh well, we are almost done with it now. So far today she hasn't had any poopy diapers so I think it is finally clearing out of her system.

This is the first vomiting/diarrhea illness that Eden has ever had and it has definitely been a pain in the butt. However, I'd take this illness over what she usually gets which are respiratory illnesses because those almost always land us in the ER with lots of medication and breathing treatments. So poop all you want as long as we can do it comfortably in our home in a very stress free environment! :)

Polish

When she isn't feeling good she lays so still. I couldn't help myself.



The problem came when I needed to do her left hand. See, with the recovery from the surgery leading straight into being sick, this girl relies on her thumb for comfort, and has been doing a lot of thumb sucking in the last couple weeks. For the first time, she has actually developed little blisters on both her lips, and a callus on her thumb. Goodness gracious. I was finally able to get it away long enough to paint it though. It was tough, but I succeeded.

Still sick over here...

Before I get to the current happenings, I came across a couple cute pictures taken at the hospital last week before she was discharged that I wanted to make sure ended up in my future blog book:

After getting a bath and her hair washed, our nurse brought Eden this ribbon so we could get her all fancied up. The nurse loved it so much she kept sending other nurses to walk by and look at Eden. She was quite the hit that day.

Sometimes playing with toys gets so exhausting!



Now here she is today:

Still battling this nasty sickness. We took her in to see the doctor and he said her incision looks ok and that he didn't think this was caused by any infection there. Good news! He felt that maybe she has rotavirus so there are some lab tests being done and maybe we will know for sure tomorrow.

Rotavirus? Yeah, that's what I thought, so I came home and did some research and it is very possible that this is exactly what is going on. Almost every child gets this and it is most common in infants from 6 months to 2 years old. Most commonly contracted in a hospital, or day care and takes about two or three days before symptoms begin to show up. We got home Wednesday and she started acting sick on Thursday so two to three days before that she was still in the hospital so it is most likely she got it there. Rotavirus starts with vomiting and then turns to diarrhea for anywhere from 4 to 8 days. Lovely... we are definitely in the thinck of the diarrhea and it's nasty. I won't go into details, but I'm so very grateful for the feeding tube and the fact that I can just keep the pedialyte pumping in so she doesn't get dehydrated.

Fortunately rotavirus is not something adults can get so it appears as though Brad and I will be spared from this plague. And if it turns out it isn't rotavirus, then it's just some nasty stomach bug that is really taking it's time getting through her. Hopefully we are almost done with this because I'm getting tired of doing laundry... :)

I've realized with this sickness that though sometimes I feel like we have pretty much dealt with everything, this is the first time she has had any kind of sickness involving vomiting and diarrhea. I guess we were spared for a while, but every mom gets their turn a time or two! Here's to changing a million poopy diapers!

Home Sweet Home

We are home and I've been busy with this little girl so the blog has had to wait. Here's what we have been up to since the last hospital post. On Tuesday morning the ENT team came and changed Eden's trach. They then had me change it once to make sure I was comfortable with it and so I could feel if there was any obstruction or difficulty in getting the trach in. Fortunately, there weren't any problems so we were discharged from the hospital that afternoon. We went back to my sisters house and relaxed for the evening, and then Wednesday morning we drove home.

We are so happy to be home, but unfortunately it hasn't been too easy. Since yesterday Eden has been pretty sick. She has a low grade fever, her oxygen requirement is higher, and she has been throwing up a lot. Because of the nissen surgery she had on her stomach in December, it really takes a lot for her to be able to throw up. It's quite tramatic everytime, but she has managed to get rid of pretty much everything I have put through her feeding tube. I'm not exactly sure what is going on, but I hope it's just a stomach bug and not some kind of infection.

The circus never ends around here!

Airway Reconstruction Recovery Continues

I didn't get a chance to update the blog yesterday because we had quite an active baby on our hands! She finished her rounds of Toradol in the morning and I was really worried about how her pain might be, but it seems like she is doing pretty good on medication that's not quite as strong. Right now she is still getting Tylenol, Motrin and Hydrocodone, so we have quite a few we still need to get rid of.

Yesterday they also stopped her Precedex, which was the sedation and anti-anxiety medication. It seems as though all the energy that was suppressed while she was on the medication came back all at once yesterday afternoon because we could not keep this girl still! She was happy as can be, but jumping all over, running around the crib and being completely hyper. She also didn't nap at all in the afternoon and stayed up quite late playing away. Let me tell you, it was so fun to see her so happy and active again, but it caused quite a few small problems too. All of the wires attached to her to monitor her vitals kept getting ripped off, we were constantly untangling all her lines, and one IV came out of her foot. Also, at one point right after getting a feed through her feeding tube, because of her craziness, the tube became detached and everything from inside her stomach leaked out all over the place. She was drained clean before we discovered the mess! :)

In addition to the hyper-active child we now had, they gave her a couple doses of laxative because all the medication had created some serious blockage problems. I won't go into detail, but her system is now clear and the bedding only had to be changed half a dozen times. Gross... did I mention it was a busy day yesterday?

The best part of the day though was visitors. I love seeing family and friends to get a little break from the monotony of the hospital routine. Brad's brother and his wife Stephanie came by. I think Eden was happy to see some familiar faces and she loved that they brought her some pretty balloons to add some fun to her room. They were also so amazing to bring us a pad to put on this bench that we have been sleeping on, and though it still makes my body ache, it is SO much better.

They also brought us a bar of soap which is also hugely appreciated! Up to this point we have been using shampoo as body wash because we didn't have any soap. You do what you've gotta do.... it worked. Thanks guys for helping us out!

My cousin Tyler, his wife Alyssa and their two girls also came by to visit us. It was so great to see them and visit for a while. They also came with gifts - some new books for Eden and some candy for Brad and I. Yum!! We love you guys and appreciate you so much.

Overall we are just so blown away by the amount of love and support we have received both here and back home in New Mexico. We are just so very grateful for everyone who has kept Eden in their prayers and shown us so much love and support.

We are so happy Eden is starting to feel better and return to her normal, happy self. However, this means that like any toddler, she is starting to get extremely bored being trapped in this room. We are quickly moving from one activity to the next trying to keep her entertained. She has rotated through quite a few movies because each one keeps her attention for only a few minutes and then she is ready for something else. We watch from her bed, we watch while I hold her, and then we watch while she sits in the chair too.

Sometimes the smallest changes make the same routine seem a little more fun. :)

We also continue to rotate through toys, some we brought and some they have here in the unit. These necklaces have brought quite a lot of entertainment. Thank you aunt Kally Casebier for sending these for Eden. She loves them!


She is also a great helper for her nurses. Every time they take her temp she has to take a turn and do it herself too. It's funny to watch because she can't get that into her ear without her mouth opening up nice and wide. She also helps them push the syringe when they are giving her medication, and puts the stethoscope in her ears and listens to her heart. It's amazing to watch her because she knows exactly what all this stuff is and how to use it.


She got the drain tube taken out of her chest incision yesterday and they said this action alone has probably helped with a lot of the pain. The picture is a little blurry, but the incision is healing nicely.


This one on the other hand looks pretty nasty. The incision is right at the top of the trach and it's not covered with any dressing so it looks pretty sore and gross. Every time they come to check on it they say it looks good though so I guess pink, gooey and nasty is considered good. I would hate to see how it looks when it doesn't look good!


In normal life, we change Eden's trach about once a week. Because the surgery in her airway affected the stoma and the previous pathway to putting in a new trach, ENT has to do the first post-op trach change to make sure that it goes in ok without any obstruction. Originally we thought the first trach change would be on Wednesday, but I hear rumors that it's going to be tomorrow so we hope so! If the change goes smoothly I think we will be on the path to being discharged and on our way home. We are anxious to say the least!

Then the next step is for a visit back to the operating room in a couple weeks to get the plastic disc removed from inside her airway. After that, ENT will need to do a bronch once a week for a few weeks to make sure the airway is staying open and healing as it should. We will know after a few weekly bronchs whether or not this one surgery is going to be enough, or if she will need additional surgeries to keep her airway open. We will pray that this will be the only one and that it heals and stays open like it should! We will just take one visit at a time and deal with it as it comes.

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!