3 weeks home!

We have now been home just over 3 weeks! Everything has been going great since Caydence had her little hiccup, or whatever you want to call it, last weekend. After we got back from the hospital she started acting like her normal self all over again. She made me feel like a crazy mom for taking her all the way back up to Stanford for nothing. She has been so much better over this last week that it's actually kinda weird because I don't know what got into her to start feeling better. She has been happy as can be and her spitting up has almost gone away completely. She only spits up about once a day and that is when she wakes up in the morning. We have finally been able to go up on the rate of her feeds and she's been tolerating it just fine. So hopefully she will start gaining some weight now. We also weened her adivan a little and it doesn't seem to bug her one bit, I'm sure we can have her off of it completely in no time. We have been working pretty hard with Caydence and her head control to get her caught up, and she is getting so strong! I put her in the bumbo chair for the first time today and she loved it! She was able to sit upright in the chair and hold her head on her own. It was great to see her sitting up and not just laying there. I can't wait until she gets stronger and stronger and gets to be more mobile. She is doing so good and it is the best feeling seeing her improve by the day. Coming home has been so good for her and I am so happy we pushed for this instead of sticking her in a facility. Lately we have been able to get some more sleep because we have gotten more comfortable with our nurses. Our day shift nurse is great, she comes in at 5am when our night shift nurse leaves, and I basically just get up to see how the night went and let her know anything that has changed with Caydence and then I go back to bed. It is nice that we can finally trust them enough to get some sleep of our own. The only bad thing about nurses are that they are still people and they do call in sick, like tonight...so I won't be getting any sleep tonight since our nurse is sick. I just hope that he is really sick and not just someone that is going to call in all the time because I need to go back to work really soon and I can't be staying up all night and trying to work. In a way I am excited to go back to work but then I am just so nervous to leave Caydence for so long. We already think things are crazy having her home from the hospital, now we are throwing going to work into the mix, things are only going to get crazier around here!

1st trip back to the hospital

Caydence spiked a fever on Friday and started acting differently like something was bugging her or hurting her. We just watched her throughout the day Saturday and gave her tylonal thinking that she was probably just teething. By Saturday night she was still just not herself and acting really agitated so we talked to Dr. Zebrack and asked what she thought we should do and she said to go to our local ER and see if they can figure out what is going on with her. So we packed Caydence and all of her equipment up into the car and headed to the ER. We get there, get checked in, go to triage and I give them all of Caydence's history and let them know what's been going on, and they are just looking at everything thinking that this little girl has had so much done to her. They get us back to a room right away and we gave the nurse a rundown on everything as well and she just looked so lost on where to even start. She took some notes and then came back with the doctor and probably 5 other people. The doctor basically told us that we just need to go back to Stanford. It's really funny to me that people look at Caydence and see everything she has had done and everything that she is hooked up to, and they are just so overwhelmed by it all. I guess that I am just used to all this medical stuff surrounding Caydence and I know her so well that it's funny seeing people look at her like "OMG, this is crazy". DMC wanted to transfer Caydence by ambulance to Stanford but we said that we  would rather just drive her ourselves since this wasn't really an emergency. We figured that if we were going back up to Stanford then we would probably be there at least a couple days so we went back home first to pack some clothes and things that we would need for Caydence on the drive up there. Getting Caydence ready and loaded up to go somewhere takes a lot of time!! So basically we had gone to he local hospital around 9:30pm and left there sometime after 1am, then went back home and left again around 2:30, finally getting to Stanford just before 5am. They were waiting for us there so they had a room ready when we got there. Once we got settled in, they tried to start and IV and get some blood drawn. They were able to get enough blood to run the basic tests but weren't able to place an IV. Her blood and urine results came back within normal range and her chest X-Ray looked great. The ER staff had called the cardiology team to come by and talk to us and decide what we were going to do. They tried to get us a room in the CVICU but they were full so they wanted to put us in PICU to just watch her for 24hours and see what she does. By the time all this talk was happening and they were figuring out room spaces, Caydence was actually looking way better than she had been. We finally decided that we didn't want to stay when all they wanted to do was watch her, especially when she would be in a unit that didn't know her. The doctors were trying to get us to stay but we really felt that she was fine. We only took her in to just make sure everything was OK. So when her blood work and everything came back normal we knew that she probably just caught a little bug or something and she just has to pass it. We finally left there sometime after 1pm and made it home around 4pm. Eric and I were so tired from staying up all night. We wanted so bad to go visit everyone since we had made it all the way up there but we just needed to get home and get some sleep. Sorry Rachelle... I feel horrible that we didn't go see you! Since we got home Caydence has been doing great! Her fever is gone and she has been resting nicely with no agitation which was great for Eric and I because we were able to crash on the couch while his mom and sister kept and eye on Caydence. Let's hope she continues to get better and we don't have to make another trip all the way back to the ER at Stanford.

First car ride today

We've been home basically two whole weeks now and things are going really good. We met with a new nurse yesterday and we really liked her and of course she loved Caydence (who couldn't!). She started today and she is going to be working from 5am-1pm Monday through Friday. I think she is really going to work out and it's nice that she was willing to come in at 5 when our night nurse leaves so we can actually sleep in a little once we get comfortable with her. Our night nurse is good and we feel pretty comfortable with him so we now are able to sleep at night without staying up with him. The new day nurse really knows what she's doing so I'm sure we will be comfortable enough with her pretty soon that we won't have to get up when she gets here. We finally got our batteries for the ventilator today so we had our very first outing and went to see our new pediatrician. Caydence did great with her first car ride and during the appointment. It was kinda funny seeing this doctor because we are used to all of our specialist doctors at Stanford and this doctor was just kinda lost in a way because Caydence has just had so much done to her. I like this doctor though because she is really motivated to learn everything about Caydence and the whole office staff was really good too and wanted to get to know Caydence. We will be going in every week for a while just to keep monitoring her and for the doctor to really get to know her. The only issue we are having with Caydence right now is that she spits up all the time which is really getting old. The pharmacist gave us some ideas to try with her meds to see if it helps out so we will try and see what happens. Otherwise everything else is going good. Caydence is such a happy baby and we are so thankful to finally be home. In a way it is weird being home just because for so long we basically lived at that hospital and at the Ronald McDonald house. We really miss all of our nurses and doctors and we especially miss all of the friends that we made while we were there.

Update

We have been home for one week now! Overall everything is going really well. It feels so great to have Caydence home and have all of us here together. Tanner is such a great big brother! He loves his sister so much and really wants to help out with her. He wants to hold her and play with her, and if you ask him to get something for her then he will and feels like he is helping take care of her. Even though it is nice being home, it is really crazy! I never would have imagined that our life would turn into this. We have excepted that this is what it is and there's nothing going to change it so we kinda just do it. It does really suck at times because there is so much to think about while dealing with Caydence. You can't just pick her up when you want to, you have to make sure that everything is in a position where it's not going to pull or anything else. You could pick her up and then she will start coughing and you have to put her back down just to suction her. Every four hours she is getting meds and breathing treatments. Someone always has to be right there with her watching to make sure nothing happens. Eric and I are so tired from taking turns staying up all night and rotating. I completely understand why everyone was so nervous to send us home. I'm not saying that this is too much and we can't handle it, because we can totally handle this, I'm just saying that it is HARD! The work you do with her isn't necessarily hard, it just consumes your every moment of everyday. No matter how hard this is, I don't regret pushing to go home. Being home is so much better than being in the hospital. Having nursing is taking some time to get used to, it is pretty weird having a stranger in your house and you are training them to take care of your kid. Our night shift nurse, Michael, is pretty cool. He actually caught on pretty quickly with everything we have to do with Caydence. We already had to get rid of our day shift nurse because she did not know what she was doing and we just immediately felt uncomfortable with her. We are waiting to meet another nurse to see if she will work out. But as of now we only have a night shift nurse and we handle the days on our own. We do need to find someone that we can trust with Caydence considering that we both need to get back to work before we don't have a job to go back to. 

Home at last!

Caydence was finally discharged from Lucile Packard Children's Hospital today! After 5 1/2 months of being stuck in that hospital and living such a crazy life, it feels great to be home. The whole time Caydence has been in the hospital it has been the thought that we would never get out of there and make it home. Now it feels like leaving came so fast. We knew we would be discharged today and Caydence would have an ambulance ride home, but it didn't really feel real anjd hit us until we were getting ready to walk out the door. This past week we have been saying our goodbyes to the wonderful nurses, doctors, RT's, and everyone in the hospital that we have had the pleasure to get to know. As we said our goodbyes it never felt like we were really leaving, I just kept thinking that something was going to happen and we wouldn't be able to leave. Today rolled around faster than I thought and we were hurrying to pack up Caydence's colorful room and trying to say some more goodbyes. It really hit me when everyone started getting emotional about Caydence leaving. Even though this situation that we have been through has been extremely challenging in all aspects, this has really opened our eyes to so much more. Going through something like this makes you look at life in a different perspective. Today was such an emotional day  for us and for the great friends we have made. It felt so good seeing how much everyone really cares for Caydence and for us. It was so nice hearing everyone say how happy they are for us and that they know we will do a great job at home taking care of Caydence. I knew that everyone loves Caydence and that they are going to miss her, but it showed so much more as we were loading her up in the ambulance today and getting ready to take off for good. We are so thankful to everyone at LPCH that has been a part of our life over these last 5 1/2. We have the best doctors, nurses, and RT's that anyone could ask for and that really means more to us than anything. I have to admit that being home now really isn't what we thought. We definitely understand now why everyone was so scared to send us home. There really is so much that goes into being home with a baby with a trach and vent.  It was crazy from the moment we walked in the door and took Caydence off that gurney. Being at the hospital you had everything at your fingertips, and at home (especially the first day home), you have to figure out where things are and what to do next. Getting used to the new equipment and set up was pretty difficult. Nothing happened that we couldn't handle, it was just being in a different environment and trying to get things organized and meeting home nurses and going through equipment and just everything. It was crazy. This is definitely going to take some getting used to and some good organization to get through this. Even though this is crazy and going to be so much hard work, I don't regret leaving for a minute. It is the best feeling being home with my whole family under one roof. All this is only going to get better as time goes on and we get all the stuff we need and get adjusted to it.

Dr. Ashok (surgical fellow), Dr. Zebrack (primary cardiologist), Dr. Reddy (heart surgeon) 

Daylan (RT)

Jerry (RT)

Mary (RT)

Hans (primary nurse)

Christina (primary nurse)

Christina (primary nurse)

Vicki (RT supervisor), Lupe (case manager)

these two went above and beyond to get us home!

Julie (Primary NP)

been there since day 1-amazing person!

Michelle (primary nurse)

Caydence on gurney getting ready to leave

Goodbye CVICU

elevator ride

Dr. Zebrack talking to "her" baby

NP Julie, RN Christina, Dr Zebrack

Mary, Vicki, and Dr. Zebrack

Caydence in ambulance

Unloading at home!

Caydence finally home at last!

It's really happening!!

Caydence outside for the first time! She loved it, so much to look at!

Caydence has been doing so good and hasn't had any issues come up over the last couple weeks. She has been on her home vent and is only doing better and  better everyday. The deal was that she had to do 2 weeks on the home vent without any issues and she can go home. So her 2 weeks is up this Thursday so that means we will be going home! It is almost hard to believe that we will finally be going home. We have been here 5 1/2 months and we never thought that this would actually happen. I am trying not to get my hopes up too high about leaving on Thursday because around here when they tell you a day it hardly ever happens. I really think that we will be leaving on Thursday though, I don't think anything is going to come up that will stop us. Our home nursing agency has been working really hard to find us nurses and they did so that isn't a worry. Supplies and everything else is the only worry I have, they have been telling us that they will have everything ready for when we are ready to go so I just hope that they pull through and get them to us. Caydence has definitely proved that she is ready to go home and I think we have proved ourselves too with our ability to care for her. If we wouldn't have been so involved in her care, and really pushed to go home, I know we wouldn't be going home. We are just so happy that this is really happening. We can't wait to go home and start to get back to being somewhat normal!