The Plan

So this morning we met with Dr. Messner from ENT to talk about the tracheostomy. We had a list of questions to ask her about it and she was able to answer just about all of them. We still really don't want to do it but we know that it is what she needs for now. We are still waiting on a date for when they will do it but it will possibly be sometime next week.They have already ordered and received a trach that should hopefully fit her considering she has such a short trachea. Caydence will also be getting a g-tube so she doesn't have to have a tube hanging out of her nose all the time. Now her face will be completely free and you can really see how beautiful she is. As much as I hate for Caydence to go through all of this and knowing how this is going to change our lives, I am starting to realize that this will be good for her. She won't be stuck in that hospital bed all the time lying on her back not being able to move anymore. We will be able to get her up and starting to be a normal baby and to catch up on all that she was missing out on these last 4 1/2 months. I can't believe it has really been that long. Crazy! That's the only word that I can say to explain what this whole experience has been for us. We have just been on this crazy rollercoaster that seems to never end. Even though Caydence will be getting the tracheostomy and this rollercoaster probably wont really end until it comes out, I am actually starting to see a little bit of light at the end of the tunnel (meaning hopefully this will get us out of the hospital and home soon.) Basically this is all we are waiting for. She still has her omphalocele but that really isn't an issue and we are just going to wait until she is about 1 or so to repair that. After getting the trach put in and she recovers from that, all we have to do is wait and just hope that we can get home nursing. As long as we can get nursing for her at home we can go. That's my only worry. We've talked to a home heath agency and they just said that it is going to be difficult but hopefully with recruiting they can find us some nurses to take on the job. If we can't get home nursing, we have to go to another facility called CRC. We've heard such great things about that place but it's not where we want to go. That only means that it is longer that we aren't home. All we want is to bring Caydence home and start to be a real family and move on with our lives. We know that even with nursing at home it is going to be extremely difficult but we are ready for the challenge.

      

                                 

  

Re-intubated (Yes, again)

Last night Caydence had to be re-intubated again. She woke up and got really mad and her Co2 jumped up to over 100 in a couple minutes. Her color changed and she just looked really bad really fast. With her Co2 being so high and her work of breathing the way it was, there was no choice but to put the tube back in. She did have a lot of swelling in her upper airway still which was probably playing a big part in all of this, but it seemed that her lower airway was playing a part in it too. She wasn't moving any air down below. So now I think we know where we have to go next...the tracheostomy. I spoke with Dr. Zebrack this morning about everything that went on and we are going to get a care conference set up with ENT, pediatric surgery, and the cardiology team to decide what our next steps are and what order they go in. Eric and I both are still on the fence about the whole tracheostomy thing but I think that we realize that it's what she is really going to need for the time being. As much as it sucks and we hate to think about it, I just keep telling myself that it's not forever. We will be fine with whatever happens, but I just hope that everything works out in a way that our life doesn't have to be completely thrown around (more than it already is). So now we just have to get a plan in place and see where things take us from here.

24 hours post extubation

Caydence has officially made it over 24 hours post extubation! Her night started off a little rough at first with her getting agitated pretty early on, but after we suctioned out a huge mucus plug she was much better. She did great all night long. She would wake up and look around and seem pretty content. She made it past her dreaded 6am with no problems. But around 8:30 she started getting really worked up and didn't want to settle. We ended up having to give her quite a lot of extra meds and put her on a versed drip to go along with the dex. ENT looked with a small scope to see if she had any more mucus plugs like last night but she had none, just a little swelling. We didn't know why she was so worked up. It was so hard for me to see her so worked up and not able to settle. I was at the point where I told them to just put the tube back in, but to my surprise the doctor really didn't want to. She said that if we really want to give her the best chance then we needed to let her ride it out to make sure it wasn't caused by what she had done yesterday. I just didn't really  know what to think, which I still don't. I just keep going back and forth about what to do. I feel bad watching her struggle because I know that she has so much going on and that it's a very big possibility that she won't be able to keep the tube out, but on the other end I want to make sure we know for sure that she can't do it before we make any major decisions. Today has been the most emotionally draining day for me. I have no idea what all the doctors and nurses were thinking about me today because I completely broke down. I try so hard to keep a strong face and not show when things really bother me but today I just couldn't hold it back. I hate all the not knowing what comes next. I don't like feeling like I am making my daughter work so hard to prove to me what she can do. I wish there was a simple answer. Since that episode this morning, Caydence has been doing pretty good. Now we just have to wait and see what happens next and see if the swelling from her procedure yesterday is what was causing this today or if it is her left bronchus that can't handle being off the vent. All of this is really starting to get to me and it's so hard to keep it all together.

Extubation...round 3

Caydence went to OR today to have that granuloma tissue removed. They took her down and lasered it out as much as they could. She did really well with that and came back with no tube, just on C-Pap. She was pretty angry when she got back to her room and her gasses didn't look to good but she soon calmed down and everything looked better. She seems to be doing pretty good so far but it has only been a couple hours. I think the real test will be when 6am hits, that seems to be the time she doesn't like and gets worked up and ends up wanting that tube back in. So only time will tell. I have no idea what she's going to do this time around. This is the last time we try extubating her so I hope she makes it but I'm not going to get my hopes up. We know what comes next if she can't do it, but at least we have given her every opportunity to show us what she can do.

Before

And...

                                  

 

After

Bronchoscopy findings

Caydence went to OR this morning to have ENT look at her airways. The only new thing that they had seen is that she has some granuloma tissue surrounding where the breathing tube sits. They also saw what we already know about, that all her airways are just small and that the left bronchus branch still collapses quite a bit. So now the plan is to go to OR on Thursday and have that granuloma tissuse removed and try one last time with extubating. The ENT doctor told us that there's probably only a 20% chance of this helping. Everyone is still trying to push us to just agree to the tracheostomy. We still want to give her every shot at getting that tube out without having to do the trach. A 20% chance of working is still something, and to us it is worth trying. So I'm sure by the end of the week we will know where we go from here and what our next step is going to be. I just really hate how every time we think so positive about things they turn into something bad. By looking at the pictures from the bronch I can tell that the tissue is probably what was causing her to fail because when she would get so worked up that tissue just flops over her airway and couldn't get the air through. But looking at that left branch is what concerns me and I'm sure that is why everyone thinks that she will still end up needing the tracheostomy. With no pressure to hold it open it just completely collapses. So I think with removing that tissue she will be ok to make it with the C-Pap, but it's the trying to come off C-Pap that I think will be the problem. I want to be positive like we normally are and think that she's going to be fine and not need it, but I don't want to get my hopes up like every time before. So I really don't know what to think at this point. So we will just see what the coming weeks bring us. Like always, it's just the waiting game and playing it day by day and just hoping for some good news.  We still have a long road ahead of us and it really sucks but we are trying our best to hang in there and be ok. I just wish this was all one big nightmare that we could wake up from and be over. Caydence doesn't deserve any of this and I just wish I could take it all alway and have her be a normal healthy and happy baby girl.

Re-intubated...again

Caydence had to be re-intubated again this morning. I knew it was coming since last night. Around 6 last night she just started getting really agitated and took a long time to settle. We went up on her sedation and she seemed pretty good. We think she was actually on too much sedation but the doctor didn't want to touch it because we didn't want her waking up too much and getting too worked up. She did pretty good all night considering she was basically just knocked out with so much sedation on board. Around 6 this morning she started getting agitated again and got pretty worked up. Her co2 started creeping up higher and higher and so did her heart rate. We gave her a while to get settled but she never did and her co2 was too high. When the doctors listened to her she sounded like she was able to get the air in but not get it out. So they called anesthesia and 20 minutes later he was here and they put the breathing tube back in. It didn't take them as many tries as last time but it seemed like it was still pretty difficult. After the tube was back in and everything had calmed down the doctor tried explaining to us what she was thinking and basically told us that we will still look on Monday in OR with ENT but she wont be getting extubated again because it is not safe and she will end up needing to get a tracheostomy so we really need to start entertaining the idea. The idea of tracheostomy is not entertaining in any way to us. I know that it would probably benefit her but I just can't get over the idea. Out of everything that Caydence has had done to her over these last 4 months, tracheostomy is the most scary to me. It's not that I don't think we would be able to handle it, because I know we will do just fine, it's just everything that's comes along with it. Our whole life will be so different. I've just been thinking that we have to get past this whole hospital thing and when we get home we will be somewhat back to normal. If Caydence ends up getting a trach, nothing will be normal. Who knows if we will even be able to make it home with her, and even if we do that means we will basically have a nurse living with us. Don't get me wrong, I will do whatever it takes to have Caydence home, it is just going to be so different. I'm just really torn with the decision. If it's what she really needs then that's what we will do. This has got to be the most difficult decision we will have to make. I am just so over everything and just want to be home. I really don't know how much more we can take. So we just have to wait and see what will be found on Monday. Hopefully it will just be something that they can fix, but if not then we have some big decisions to make and see where our life goes from there.

Extubation round 2

We extubated Caydence this morning for our second try. She did great! This time she did way better than the first time. Last time she was so mad when we pulled the tube and took a while to calm down. This time she didn't even care. She does have a lot more sedation on board this time but I think that this time is just way better. We had to come down on some of the sedation just because her heart rate was getting a little low. She started out on a pretty hefty dose so it was good to come down a little. It has only been a couple hours since we pulled the tube but she is doing really well and everyone is happy with were she is at. Her gasses are looking good too. Everything just went extremely smooth this time around. Lets just hope it lasts. I'm sure we will really start seeing how she's doing when we come off the sedation a little more. But for now she is in a good place, we just need to keep her calm and keep it quiet in here and she will make it. Eric and I will be doing shifts again tonight to make sure nothing changes. Thank goodness my mom is here to entertain Tanner so we don't have to worry too much about him. He wants to be in here with us but I'm not going to take the chance of her getting too worked up again. We still have the same neighbor as last time so that's already something I'm worried about. So I think the extra sedation Caydence is on will help keep her calm. I really hope that this is the last time we have to do this, I don't want that tube to go back in anytime soon. We are so ready for all this to be over and get home. Even if the tube stays out this time we are still looking at a couple more months here. It's hard to imagine being here for that much longer considering we have already been here for about 4 months. Caydence needs to get out of here and realize that she does have a home outside of this hospital!

Everyone getting ready for round 2

Tube is out!

Look at those lips! So cute!

Dr. Zebrack making sure she is good.

Have to try and keep the binky in her mouth so the air doesn't escape too much.

RT Jerry and nurse Sarah

(her other parents for the day)

The new plan

Her hair is getting so long we put it in pig tails!

Don't mind the ugly hospital blankets, we didn't want to send her cute ones on the road trip to cath lab.

    

Yesterday Caydence went to cath lab to get her new central line placed. They were successful in getting a good double lumen line in place. Now we have more access for when we extubate again to be able to give her TPN and her sedation at the same time. This morning she had her broviac line that has been there forever removed which went really well. She has been doing really good throughout all the procedures that she had done. They had to sedate her and raise her rate up for the procedures but had no problem getting back down on it. She's doing so well that her gasses are showing she is pretty much over ventilated even though she is on such low settings. The plan was for Monday to go down to OR and have ENT there to pull the tube and look at her airway, but since she is looking good and looking like she doesn't need that much time, Eric and I convinced Dr. Zebrack to just give her one more shot before then and just pull it tomorrow. We think that her problem was just that when the tube came out she had some swelling in there and when she got agitated and cried it swelled up more. So we talked with Dr. Zebrack about giving her more sedation this time and trying to have it as quiet as possible (meaning no 3 year old next to us). She was pretty hesitant at first just because she really wanted to be able to look down there to see if there was something that needed to be fixed and also that it will be the weekend and there is only one attending doctor covering the whole unit and anesthesia wouldn't be right there in case we had to re-intubate again. We told her that it is Dr. Wright that is on this weekend (she is one of the best attending doctors), and that Jerry the RT will be with her afterwards and Mary will be here all weekend (they are the two best RTs that know Caydence really well). After we pleaded our case she gave in. She knows too that Caydence is going to do fine but I do understand why she was hesitant. It was very difficult to re-intubate her and I know she just doesn't want anything to happen to her. We are very confident that she is going to do it all the way this time. I think that with our new plan of adding the cetamine(I don't know how to spell that) for extra sedation is going to help. We just have to make sure our neighbor is quiet (they should give her some sedation too) and that we keep Caydence as calm as possible. I hope she makes it all the way this time but I'm not going to be disappointed if she ends up having to be re-intubated again. I have been told many times that in babies that have been intubated for a long time like she has, it takes a few times before it stays out for good. It is good for her to get the practice. She has had that tube in for just about 4 months, I don't expect her to do it without any problems. She did great last time even though it didn't last long, so I know she will do it again, and for longer this time. We are still keeping our appointment for OR on Monday just in case she doesn't make again this time. But at least we will know that if she can't do it this time then there probably is something else going on in there that needs to be fixed. So tomorrow is the big day (again) and we are very excited to give her another chance. I can't wait to hear that little faint cry again :)

Bad Day

Caydence had to be re-intubated this morning :( She was doing so good on C-Pap all day yesterday and all night. They had moved a 3 year old girl in the room next to her late last night and you could tell that every time the girl would cry Caydence would cry. Around 6am this morning the girl started crying again and Caydence got real worked up and we couldn't get her to settle out. We gave her more sedation but nothing helped and she eventually got so worked up she started D-Sating. All the doctors rushed in and started bagging her and trying everything they could do to get her back and not have to put the tube back in but nothing worked and she started getting worse so they had to put it back in. Dr. Zebrack tried to get it in and was having a hard time, it just didn't want to fit or something was blocking it. Anesthesia  had to be called in to have them get the tube in. He was finally able to get it in after a couple tries but with a much smaller tube. Dr. Zebrack was trying to think of what would be causing the tube not to fit. She thinks that since Caydence has been intubated for so long that there could be some narrowing or scar tissue around where the tube sat or that it could have just been swollen still from pulling it out yesterday, and that when she got so worked up it would just collapse and she was fighting to get enough air in. They did an X-Ray after she was re-intubated and it only showed some collapse on the lower right side. So we know that her bronchus collapsing wasn't the problem because that is on the left side and that looked fine on X-Ray. So we know that she can handle having the tube out and being on C-Pap since she was fine for just about a whole day. Our plan now is to let her get a little rested and get some good nutrition in and try again. We are going to take advantage of the situation and send her to cath lab tomorrow to get a new central line placed. She needs more access for the next time we extubate because she only has one line right now and when we extubated we couldn't feed and we couldn't give TPN because her line was being used for her dex drip. So hopefully tomorrow they will be able to get a good double lumen central line in and then we can also get her broviac line out so we don't have to worry about it getting infected the longer it stays in there. As long as everything goes good and we can get her back down to extubatable settings on the vent by this weekend, then the plan is for Monday to go down to the OR and have ENT there to extubate her and put a small scope in as they pull the tube out to see what's going on in there. If there is some narrowing then they could just balloon it open some, and depending on whatever else they see hopefully they could fix it. It could also be that her trachea is still just a little weak or floppy from the surgery she had on it and that would just need to strengthen up on its own while on C-Pap. Today was such a crazy day. It's just amazing how things could go from great to bad in such a short period of time. All the doctors were so surprised by how well she did having the tube out. She really proved that she can do it. Now we know that when we pull the tube again, she needs to be in a quiet place with nothing that is going to agitate her at least for the first day. It was so nice today tho seeing how many people here really love and care so much for Caydence. While everything was going on with her this morning I would turn around and see our other nurses standing outside our room spending there break time just watching to make sure she was OK. We really are so thankful that we have such great nurses and doctors and know that they treat Caydence as if she was their own child. Everyone in the unit was really pulling for her that the tube stays out, they were so excited that we actually got to the point of it coming out and her doing good. It was really disappointing that she had to be re-intubated and we took it pretty hard at first, but it was what she needed at the time. We aren't discouraged, we know that it will come out again, it just has to be under better circumstances. Like I said too, we are taking advantage of this week and getting things done that will hopefully make it better for when Monday comes around and we pull it again.

Finally...

Caydence finally got her breathing tube out today! All night and all morning I was so nervous not knowing how she was going to do. We planned for 10am and sure enough everyone was in the room at 10 ready to go. I think everyone was just as nervous as I was because Caydence has had that tube in for the longest time and it has never came out, well except for that one time where it was an accident and she coded, but we don't need to remember that. Eric and I stood back while everyone stood around the bedside and got everything ready and then Dr. Zebrack pulled the tube out of her mouth. They put the C-Pap on right away. She was pretty mad when the tube first came out, I was able to hear her little cry. It didn't sound much like a cry, more like a faint squeak. Hearing that little cry was the best feeling. It was the first cry I've heard since she came out of my belly. The first hour had to be the most stressful because she was so mad and all I wanted to do was pick her up and comfort her. Everyone was on pins and needles hoping she would do fine. The first gas they drew wasn't very good so everyone was still unsure of how she was going to handle it. She finally calmed down and started to relax and they drew another gas and it looked great. We did a chest X-Ray and that looked great too. Caydence had everyone surprised of how well she was doing. She would get mad at times and get all worked up and cry but overall she has been doing really good. I think the only reason she would get so mad was because she hasn't know any different than to have that tube in her mouth and now its gone, and also I can't blame her for being uncomfortable with having that C-Pap mask on her face. They had started her on dex early this morning which is a sedative that should relax her but shouldn't effect her breathing. It seemed to help her after they took the dose up. She has just been sleeping most of the day besides the times where she was mad and uncomfortable. We are just so happy that we were finally able to get that tube out. Her face is so pretty without all that take on her cheeks and tube in her mouth. This was such a big day for all of us, especially Caydence! I can't believe it took almost 4 months to get her extubated. It's just crazy thinking about it that in one week she will be 4 months old and has never been home. Even though she has been through so much I am so thankful that she is here and moving forward. The whole ventilator dependence thing is what has been holding us back this whole time. So getting her off that has been such a big step for her. We still aren't out of the woods yet, we just need to get through the first 24hours and see how she does and go from there. We will have to see how much C-Pap support she will need and how long she will have to be on it and if she even tolerates it without being pretty sedated. All this will come over the next few days and weeks. This is all uncharted territory for Caydence so we don't know what comes next. Lets just hope that she does fine and we can get her home as soon as possible!

Dr. Zebrack, nurse Christina, and RT Adriana getting Caydence ready to pull tube.

NP Megan being moral support waiting for the show to start.

NP Julie (the one in blue) was with her every step of the way, she even sat outside her room almost all day making sure she was doing fine.

Caydence was mad after the tube came out and C-Pap mask went on!

She calmed down and actually liked having a paci in her mouth.

The sprint

Caydence did her sprint on the rate of 0 this morning and did great! She didn't act much different. So I guess the plan is to pull the tube out tomorrow. I'm still not too sure if I want to do it tomorrow just because the RT that I wanted to be there when it happens won't be here till Tuesday. But then again I think she is going to do just fine so I don't think it will matter too much who is here. Well, it always matters to me who's here because I like to make sure I know and can trust who's watching her. I was so nervous this morning during her sprint. I knew she was doing fine, but it was just so nerve racking because I knew that depending on how she did would make the decision of pulling the tube or not. I was so relieved when the hour was up because she looked great. The doctor came in and looked at her and thought she looked good. As soon as the doctor left Caydence started smiling and looking so happy. I was like she was saying "see, I told you guys I could do it!" I think that she really is ready to get that tube out. I texted our primary (Dr. Zebrack) since she will be the one that is here all week and asked her if she thought we should try pulling it tomorrow. She said that she just wanted to see her first in the morning but feels that we should try. So tomorrow is the big day unless something changes tonight. We are still waiting on the blood culture result from the other day to see if she does have and infection but everyone is thinking that she doesn't. She hasn't shown any other signs of infection so I think we are good. I can't wait till tomorrow to see how she does. I am really nervous about it but I know she will do fine. I just can't wait to have that tube out and see her pretty little face without all that tape on it!

This is with no rate! Lowest settings she has ever been on!

Good job Caydence!!!

 Caydence smiling right after sprint

Almost there...

The past few days have really been nerve racking. It seems like every night Caydence decides to get really mad and not want to settle. I don't know what it is about night time that she doesn't like. She doesn't really do that during the day while we are there. I think that she just knows that we aren't there all night and wants us to be there or something. She spiked a fever yesterday and the day before. We collected blood cultures, a urine culture,and a sputum culture. The first blood culture showed something but they suspected that it was just contaminated so we re-drew another set and are waiting to see what that shows. Her respiratory culture showed something growing also. They aren't thinking that it is really anything serious. With her being intubated for so long she is prone to having something colonizing in there. She isn't showing any other signs of  having an infection so they really aren't too worried about it. The only thing that sucks is that since the culture did show something she has to be on contact and droplet isolation. So now just going into her room we have to gown up and everything. Her X-Rays and everything else look really good with no signs of pneumonia and no signs of collapse. We went down on her rate on the ventilator today to 10 which is basically extubatable. So our plan is for tomorrow to go down to a rate of 0 for 30min to 1hour and see how she does. If she does fine with that then we know that she should do just fine when we pull the tube out. If she does good with the sprint tomorrow then the plan is for Monday or Tuesday to pull the tube and see what happens. I think that she is going to be able to do it but there is always that "what if" thought in the back of my head. We have been pretty good about only thinking positive about all this but sometimes it's really hard. I think that she is really trying to prove to us now tho that she can do it and that she is ready. She still has been breathing pretty fast but I think that everyone is in agreement that that is just the way she is going to breath. Most babies breath in the 30-40s but Caydence breaths in the 60-70s. We think that her omphalocele plays a part in that.  You use your abdominal muscles to help you breath, and hers aren't really normal because she has that. The only thing they really worry about with her breathing so fast is that she is going to burn too many calories and not gain weight, but she has slowly been putting more weight on so everyone is fine with her breathing faster than normal. She really is a baby that has stumped a lot of doctors and really made them think. She likes to keep everyone on there toes. She truly is unique and very complicated. We can be thankful that we have some of the best doctors around caring for her. Sometimes we get so angry with them and with the whole hospital in general, but deep down we really know that she couldn't be in a better place. So lets just hope that tomorrow she does fine with the sprint on 0 rate and we can plan on taking that tube out and moving on from there. I will be sure to update tomorrow and let everyone know how it goes. Again I want to thank everyone for all the thoughts, prayers, and generosity you all have shown. And an extra thank you to our neighbors Lena and Darren for taking care of our house and our animals while we have been gone for so long! I don't know what we would do without you guys!

Ups and downs

So Caydence had a pretty rough night last night that carried through the day today. I got a phone call early this morning that she was really agitated and wouldn't settle. I went to the hospital to check on her and she looked really bad. Her heart rate and blood pressure were way up there and so was her breathing rate. She looked like she was working so hard to breath and was just exhausted. We gave her some more meds to try and calm her down but nothing really worked. She had me really worried because we made a change on her ventilator yesterday and I was afraid that she just wasn't tolerating it. The doctors came in and looked at her and really had no idea why she was acting the way she was. Her x-ray looked great and so did her blood gas. If she wasn't tolerating the vent wean then her x-ray should have showed signs of collapse which it didn't. Her hematocrit has been slowly dropping over the last week so we decided to transfuse her and see if that would possibly help her. Once the blood was almost done, Caydence totally changed. She started smiling and just looking more like herself. Her heart rate and breathing rate started to slowly come back down to her baseline and her work of breathing improved. Everyone was pretty surprised because they really didn't think that just being a little low on blood would make that big of a difference in her. I guess that was just her way of showing us that she just needed that little boost. I was so relieved when she started looking better. It is such a big week for her because we are trying to get her off the ventilator. This is the make it or break it week. We should know soon if we are going to be able to get her extubated. Like I've said before, all I want is to get that dang tube out of her mouth and get her moving forward. It really hit me today also that I only have one more month before I must go back to work. I know that Caydence isn't going to be out of the hospital anytime soon so it's really hard trying to think about having to go to work and having her so far away in the hospital. I know that I have to go back otherwise I will not have a job and we would not be able to keep our house and everything that we have at home. I never in a million years would have imagined that having another kid would change our life so much. This whole experience has been such a roller coaster for all of us. We never know from day to day what's coming next. We have come to realize that all we can do is just take it day by day and hope for the best.

First time wearing clothes!

We put clothes on Caydence for the first time ever a couple days ago. We had to do a little tweaking by cutting the straps off so we could just slip it on but it worked and she looked so cute! It really made her look like a normal baby and look so much healthier. I think I'm going to have to go shopping to find some more dresses that can just slip on. Other than the excitement of playing dress up for the first time, Caydence is doing pretty good. We have made some more weans on the ventilator and she seems to be tolerating them fine. Her breathing rate has been a little higher than usual so that makes me a little nervous, but she really isn't showing any other signs of not tolerating the weans. Her heart rate and blood pressure have been good and she is slowing putting some weight on. Let's just hope that she keeps up the good work and we can get that tube out sometime next week!

Looking good!

So Caydence is looking much better today. It seems like whatever it was that she had going on the last few days is passing. She is getting back to her baseline with her breathing and everything. We were even able to make a rate change on her ventilator today. She is getting very close to the point where we can get that breathing tube out of her. We are hoping that over the next week we will be down low enough on all the settings that we can start seeing what she can do without it. Even if we are able to get the tube out she will still at least be on C-Pap for a while. Dr. Zebrack (our primary doctor) came in today to check on her and said that all the doctors are getting more optimistic about her coming off the vent. It was nice to hear that everyone is leaning more toward her getting off then not. She really is doing great compared to where she was a month ago. She is so much more comfortable now and her breathing is better than ever before. We just need to get her to gain some more weight. She has been starting to smile a lot now which is super cute. I can't believe how happy she is considering all that she's going through. She is one tough little girl! I am getting more anxious everyday just waiting to see if we are going to be able to pull that tube out and how she is going to do. I want more than anything to have that tube out and start treating her like a normal baby. I'm tired of having to watch her just lay there and not be able to move much.

Always something

So Caydence kinda had a rough day today. When we got to the hospital this morning she was pretty agitated. Her breathing rate was high, her heart rate was high, and her blood pressure was high. She was having tons of secretions and just wouldn't settle. Normally if she is agitated it is due to the secretions and she just needs a good bag suction. Today that just wasn't the case. This went on all day. She would be upset, then settle out a little and fall asleep, then about 30 minutes later she would be waking up crying again. And when I say crying I mean she looks like she is crying but no sound comes out since she has the breathing tube in, this is the saddest thing to see. It was breaking my heart all day seeing her so upset and we couldn't do anything about it. The doctors decided to to a x-ray to see if her feeding tube was in the right place because we weren't able to get anything out when we pulled back on it. When the x-ray came back it showed she had a belly full of air. So we stuck a bigger tube in the other side of her nose and sucked all the air out and let it be on continuous suction for an hour to make sure we got it all out. We also drew some blood to check her WBC and CRP to see if maybe she has an infection coming on. Both came back elevated so we drew blood cultures and started antibiotics. I just hope that the cultures come back negative because the last thing we need is an infection. I am really worried about her broviac line being infected because that line has been in since her first surgery. I just don't want to have to put her through the process of taking it out and putting a new one back in. It's not like it's just a normal IV. It just seems like something always comes up when we think she is doing so good. I think Caydence has been here so long that she just thinks this is her home and doesn't want to leave. She started looking better tonight after change of shift, her breathing rate and heart rate went down quite a bit. So I am hoping that whatever was going on today will just pass and she will be back to her normal self tomorrow and we can get back on track with weaning down the vent for our goal of extubation.