We have been home for a little over a week now and things are slowly improving. This is pretty normal for Casey. She can go downhill really fast, but the climb back up is always a long one.
Casey has still not found her voice. She is trying to make some sounds, and there have been occasional little squeaks here and there. Last night she got her weekly treat (3 Pony episodes in bed) and she tried to sing one of the songs.
We have been trying to ween her off of oxygen. We started by going down on the flow and over the past few days we have gone an hour here and there without her hooked up. Each time she would do okay, but would get tired and need it back pretty soon. Each day we are going a little longer. Hopefully in the next week we will be able to take her off all together.
Casey is still on bipap at night. She has been coming off earlier and earlier though (by her choice). In the past when she has needed bipap she lets us know when she is done with it. Hopefully we can pack it back up in the next week or 2 as well.
The new J tube site started out so beautiful. It ended up getting stressed and now we are dealing with a lot of leaking issues. We were not expecting to have issues like this so early on. Luckily, one thing we have a lot of experience in is leaking feeding tubes. It is pretty bad, but no where near as bad as the G tube was. The good part of the G tube leaking was that we could take it out from time to time to try to tighten up the site. The J tube is still a new site and we can not take it out without the risk of not getting it back in (very scary). After 6 weeks we can take it out, but not for long. Until then we just have to be creative with taping and bandaging options.
We are slowly working on advancing Casey's food rate. She is on a low rate right now that means she has to eat 24/7. If we can get to a higher rate we will be able to turn her off some and let her have a break. That will help with the leak some as well.
Since getting home we have been pretty busy with follow up appointments. This week is full of follow ups as well as the next. Hopefully by mid-May we will be able to get back to our usual schedule and off all of the additional equipment.
Our goal for this week is to work on finding Casey's voice, getting off oxygen, getting off bipap, and advancing the feed rate.
Thanks again to everyone for the continued support. Casey is a tough kid and has been through so much. Having a wonderful support system like you all makes a big difference.
Saturday, April 27, 2013
Sunday, April 21, 2013
Family Birthday Celebration
Since Casey is home we decided to have a quiet family celebration for her birthday (and for being home) this weekend. Tim's mom and brother Larry came in from Indiana and my mom and John came in from Houston and my sister Megan and grandpa came over. Casey was pretty out of it for the most part, but she did wake up enough to see her very special My Little Pony cake. She was able to get a "Dream Cake" through Icing Smiles this year. The local baker that they used was Piece of Cake out of Georgetown. She did an AMAZING job. The cake tasted as good as it looked too. We gave Casey the cupcake on top. She enjoyed the icing, then when we got into the cake she was all over the raspberry filling. She loves her raspberry.
We are working to try and get a better handle on Casey's medications so that she is at least a little more alert. She is so out of it most of the time right now. Tomorrow I need to call and set up 6 follow up appointments and Tim has to call a handful of DME's to get equipment and medication needs in order. Luckily Emily (Casey's nurse) will be here tomorrow so we can get on the phones to get stuff moving.
Casey is doing bipap at night and we are starting to ween her off of the oxygen during the day. She did a few hours this evening without the oxygen and she did great. We will try again tomorrow and see if she can go longer.
Here are some pictures from the birthday party- including the awesome cake. Enjoy!
We are working to try and get a better handle on Casey's medications so that she is at least a little more alert. She is so out of it most of the time right now. Tomorrow I need to call and set up 6 follow up appointments and Tim has to call a handful of DME's to get equipment and medication needs in order. Luckily Emily (Casey's nurse) will be here tomorrow so we can get on the phones to get stuff moving.
Casey is doing bipap at night and we are starting to ween her off of the oxygen during the day. She did a few hours this evening without the oxygen and she did great. We will try again tomorrow and see if she can go longer.
Here are some pictures from the birthday party- including the awesome cake. Enjoy!
Thursday, April 18, 2013
Home Sweet Home
WE ARE HOME!!! Although we are home, Casey still has a lot of work to do. The rest of the work can be done at home. At home she is more comfortable, able to go at her own pace, and we don't have to wait on or rely on others to get her what ever she may need. It's a lot of work for all of us. We are more than happy to do the work though.
We got home around dinner and have since been trying to get all of her new prescriptions filled, unpack, laundry, etc. Luckily Casey's night nurse was able to start back up right away. Tim and I have been taking turns with 3-4 hour sleep shifts. It is going to be really nice to lay down in bed tonight. I am sure I won't sleep much since I am still so worried about Casey, but at least I can lay down in my bed and I know that someone she knows is right next to her the entire time.
We will have a quiet, low-key family get together this weekend to celebrate her being home and her birthday. She is not up for much so we will postpone her friend party until she is ready and able to enjoy it.
Thank you to everyone for all of the thoughts, prayers, cards (virtual & physical), gifts, food, and visits. We are truly blessed to have such amazing family and friends. We really appreciate continued thoughts and prayers as she continues her long recovery.
We got home around dinner and have since been trying to get all of her new prescriptions filled, unpack, laundry, etc. Luckily Casey's night nurse was able to start back up right away. Tim and I have been taking turns with 3-4 hour sleep shifts. It is going to be really nice to lay down in bed tonight. I am sure I won't sleep much since I am still so worried about Casey, but at least I can lay down in my bed and I know that someone she knows is right next to her the entire time.
We will have a quiet, low-key family get together this weekend to celebrate her being home and her birthday. She is not up for much so we will postpone her friend party until she is ready and able to enjoy it.
Thank you to everyone for all of the thoughts, prayers, cards (virtual & physical), gifts, food, and visits. We are truly blessed to have such amazing family and friends. We really appreciate continued thoughts and prayers as she continues her long recovery.
Wednesday, April 17, 2013
We've Moved
Yesterday afternoon Casey moved out of the PICU and into the IMC. The IMC is where we usually get admitted so we are much more comfortable here. The staff knows Casey (& us). The room is a little bigger & it has a shower (we stink). There is still low patient:nurse ratio as well so when Casey needs help we can get it quickly.
Casey threw up more blood yesterday, and she has bloody stools as well. We are worried about the GI bleed right now. Her blood count has been falling daily and she required a blood transfusion today. It's tricky because there are so many factors here; the bleed could still be from the same source as the bleed pre-surgery. It could be a bleed from the thin/damaged tissue used to close the old tube site. Or it could be bleeding due to the amount of stress and pressure she has been under while working to open her lung. The doctors have added/changed some medications in order to try to target & potentially resolve the bleed. We'll keep a close eye on her blood count as well as what she has coming out. We should know if its working in the next few days.
Casey has started fighting bipap treatments. She usually tolerates it when she needs it, but once her lungs start to feel stronger she fights to get the mask off. This is a generally a good sign. However, it's possible she is fighting not because her lung is better, but due to the air pressure upsetting her stomach. We'll still try bipap at night and keep it on as long as she will let us. As worried as we are about her GI bleed, we have to continue as many pulmonary treatments as possible.
Today doctors started moving as many of her medications as possible from IV to oral (j tube). Once things are moved to the j tube and we have some answers & progress on the bleed we can do the rest of the work toward recovery at home. It will still be a lot of work, but being at home will make such a huge difference for all of us.
Casey is starting to get some of her attitude back. She is giving doctors the stink eye and trying to move around some. Since the first time she stretched after surgery was also the first time she threw up a good amount of blood, we are on edge whenever she stretches now (Tim a little more than me), but still happy to see her getting some strength back.
Casey threw up more blood yesterday, and she has bloody stools as well. We are worried about the GI bleed right now. Her blood count has been falling daily and she required a blood transfusion today. It's tricky because there are so many factors here; the bleed could still be from the same source as the bleed pre-surgery. It could be a bleed from the thin/damaged tissue used to close the old tube site. Or it could be bleeding due to the amount of stress and pressure she has been under while working to open her lung. The doctors have added/changed some medications in order to try to target & potentially resolve the bleed. We'll keep a close eye on her blood count as well as what she has coming out. We should know if its working in the next few days.
Casey has started fighting bipap treatments. She usually tolerates it when she needs it, but once her lungs start to feel stronger she fights to get the mask off. This is a generally a good sign. However, it's possible she is fighting not because her lung is better, but due to the air pressure upsetting her stomach. We'll still try bipap at night and keep it on as long as she will let us. As worried as we are about her GI bleed, we have to continue as many pulmonary treatments as possible.
Today doctors started moving as many of her medications as possible from IV to oral (j tube). Once things are moved to the j tube and we have some answers & progress on the bleed we can do the rest of the work toward recovery at home. It will still be a lot of work, but being at home will make such a huge difference for all of us.
Casey is starting to get some of her attitude back. She is giving doctors the stink eye and trying to move around some. Since the first time she stretched after surgery was also the first time she threw up a good amount of blood, we are on edge whenever she stretches now (Tim a little more than me), but still happy to see her getting some strength back.
Monday, April 15, 2013
Hard Weekend
This weekend was really hard on Casey (and us). Friday and Saturday we had to push her really hard with her different treatments. She worked so hard, but it took its toll on her. Saturday night Tim and I could not take it anymore. We talked with the doctors on Sunday and told them that it is just to much. They actually agreed and were thinking the same thing. We tried some easier interventions on Sunday (still a lot of work, but not quite as bad). Casey was so happy to get a little bit of a break. We were able to get her out of bed some, she watched some ponies, read some stories and seemed to really enjoy the day. The good news is that this mornings x-ray showed that the trend was still improving (slow, but forward).
We were on a mission to start talking with the doctors about getting her toward the door. She is still very tired and depleted from Friday and Saturday's activities. We are a little worried about the over all toll that this weekend has taken and how long it will take her to recover.
Casey always does much better at home in her quiet controlled environment with her stuff and where she is most comfortable. While we appreciate and recognize that the medical interventions are necessary we also realize that there is a point that the comfort interventions are sometimes more important for Casey. It is not going to be easy nor quick, but we know she will do better at home. Last time this happened it was a good month or 2 after going home before Casey was recovered. We expect this to take a month or more as well and a lot of hard work at home.
This morning started out okay. Out of no where Casey threw up a good amount of old blood and gastric juices. Her surgeon had been watching for gastritis all along and we are pretty sure that is what we saw this morning. The first thought was to place an NG tube to allow Casey to vent any remaining blood. Casey is not a fan of the NG tube. She was already upset from throwing up, then the NG tube sent her over the edge. She was worked up all day and has still not fully come back to a resting heart rate. Hopefully as she settles in for the night her numbers will level off. Moving forward we may have to do this from time to time. We will have to find a way to do this with less agitation. Gastritis is treated with antacids. Casey was already on some, but her dose was increased today.
While Casey finishes up her IV antibiotics we are working to set up all of her home therapies here at the hospital. Today they changed most of her respiratory treatments to use the equipment we have at home. Over the next few days we will work on getting her feeding routine in line with what we can manage at home. Then it is about getting her off some of the IV medications and finishing up the antibiotics. We hope to be home late this week. Until we have the discharge papers in our hands though, we really can't say when we will be leaving. Whenever it is, we will be so happy to be back home.
We were on a mission to start talking with the doctors about getting her toward the door. She is still very tired and depleted from Friday and Saturday's activities. We are a little worried about the over all toll that this weekend has taken and how long it will take her to recover.
Casey always does much better at home in her quiet controlled environment with her stuff and where she is most comfortable. While we appreciate and recognize that the medical interventions are necessary we also realize that there is a point that the comfort interventions are sometimes more important for Casey. It is not going to be easy nor quick, but we know she will do better at home. Last time this happened it was a good month or 2 after going home before Casey was recovered. We expect this to take a month or more as well and a lot of hard work at home.
This morning started out okay. Out of no where Casey threw up a good amount of old blood and gastric juices. Her surgeon had been watching for gastritis all along and we are pretty sure that is what we saw this morning. The first thought was to place an NG tube to allow Casey to vent any remaining blood. Casey is not a fan of the NG tube. She was already upset from throwing up, then the NG tube sent her over the edge. She was worked up all day and has still not fully come back to a resting heart rate. Hopefully as she settles in for the night her numbers will level off. Moving forward we may have to do this from time to time. We will have to find a way to do this with less agitation. Gastritis is treated with antacids. Casey was already on some, but her dose was increased today.
While Casey finishes up her IV antibiotics we are working to set up all of her home therapies here at the hospital. Today they changed most of her respiratory treatments to use the equipment we have at home. Over the next few days we will work on getting her feeding routine in line with what we can manage at home. Then it is about getting her off some of the IV medications and finishing up the antibiotics. We hope to be home late this week. Until we have the discharge papers in our hands though, we really can't say when we will be leaving. Whenever it is, we will be so happy to be back home.
Saturday, April 13, 2013
Saturday
Casey stayed on the bilevel bipap for nearly 24 hours straight. She came off a few times for minutes, but mostly she stayed on. This mornings X-ray showed a little (not much) improvement. The doctors wanted to keep her on bilevel all day again. Casey was not having it though. She was fighting the machine and needed a break. After getting the doctors to agree Casey was so happy on her break.
The plan for today was to split up the day with high flow cannula and bilevel. Casey has been really good about tolerating all of the interventions, but she is getting so tired.
She has not been having much output (diapers). They are about to add some free water to her feeds and some additional meds to help with a BM.
We should know tomorrow if anything grew on the cultures taken after yesterday's fever. She hasn't spiked another big fever since so at least that's good news.
Tonight will be busy switching back and forth between treatments. As long as the X-ray is improving- even if only a little- we'll take it. Lets hope/pray for big improvements though.
On a positive note, Casey is up for a little playtime tonight. She is listening to Pinkie Pie tell her stories. This is the most interested she has been in fun in a while.
The plan for today was to split up the day with high flow cannula and bilevel. Casey has been really good about tolerating all of the interventions, but she is getting so tired.
She has not been having much output (diapers). They are about to add some free water to her feeds and some additional meds to help with a BM.
We should know tomorrow if anything grew on the cultures taken after yesterday's fever. She hasn't spiked another big fever since so at least that's good news.
Tonight will be busy switching back and forth between treatments. As long as the X-ray is improving- even if only a little- we'll take it. Lets hope/pray for big improvements though.
On a positive note, Casey is up for a little playtime tonight. She is listening to Pinkie Pie tell her stories. This is the most interested she has been in fun in a while.
Friday, April 12, 2013
Setback
Casey did really great last night, but her X-ray this morning was bad. Not only is her left lung worse, but her right side is also showing more problems now. She also had breathing / heart rate issues this morning and then spiked a fever. They have started her on antibiotics for a possible infection and switched her off bipap to a larger vent machine. It still uses a mask (she is NOT intubated), but is capable of managing her breathing better. She is on it non-stop, and is being a real trooper even though you can tell she is exhausted and uncomfortable. We are still staying on top of pain meds without it making her too lethargic, so she can help with coughs and treatments. She really is amazingly doing everything we ask of her. We hope for a better X-ray tomorrow so
we can at least give her a break to relax.
we can at least give her a break to relax.
Thursday, April 11, 2013
No IPV - Yes BiPAP
Casey had a full day. We things started bright and early. Around 3:AM when Casey finished up a round of bipap and then we got a new weight on her. She was really angry about being woke up for a weight, but I am glad we got one. She hit 31 pounds back in 2009, but then lost weight and came home at only 28 pounds. It took us about a year to get to 29 then another to get to 30. We have been hanging out at 30 pounds for a very long time. We are very excited to tell you all that Casey is 32 pounds and 4 ounces. Some of that is likely fluid from IVs, but this is a really big deal.
Casey went back to sleep for a little over an hour and then we had to wake her again (even more mad this time) for her morning xray. Just like all of the other xrays from the past week, a tiny bit better but not much.
Each IPV session has been getting harder and harder on Casey. She is no longer clearing stuff out at all, and instead is getting very agitated, high heart rate, and not able to catch her breath. This can last hours. It seems as though right when she would finally cough and calm down that we would have to get the next round started. We talked with her doctors and have come up with a new plan. The IPV is out, and now she is doing as much bipap as she can tolerate. The goal is to go 4-6 hours on then 1-2 hours off. This is hard on her, not as hard as IPV, but hard. We will get her through as much as we can tonight and see how things look in the morning (fingers crossed).
Casey got up in her chair some more this morning and was able to do some PT and music therapy. She was still really worked up from the previous IPV, but at least she is getting started. They are both going to come by 2-3 times a week while we are here. Hopefully she will enjoy the next visits more.
I am hoping for some good news on tomorrow's xray. Thank you again for the continues thoughts and prayers.
Casey went back to sleep for a little over an hour and then we had to wake her again (even more mad this time) for her morning xray. Just like all of the other xrays from the past week, a tiny bit better but not much.
Each IPV session has been getting harder and harder on Casey. She is no longer clearing stuff out at all, and instead is getting very agitated, high heart rate, and not able to catch her breath. This can last hours. It seems as though right when she would finally cough and calm down that we would have to get the next round started. We talked with her doctors and have come up with a new plan. The IPV is out, and now she is doing as much bipap as she can tolerate. The goal is to go 4-6 hours on then 1-2 hours off. This is hard on her, not as hard as IPV, but hard. We will get her through as much as we can tonight and see how things look in the morning (fingers crossed).
Casey got up in her chair some more this morning and was able to do some PT and music therapy. She was still really worked up from the previous IPV, but at least she is getting started. They are both going to come by 2-3 times a week while we are here. Hopefully she will enjoy the next visits more.
I am hoping for some good news on tomorrow's xray. Thank you again for the continues thoughts and prayers.
Wednesday, April 10, 2013
Slow and Steady
Casey has been on a pretty intense respiratory treatment schedule over the past few days. She is doing 3 hours on bipap, then a round of 3-5 different breathing treatments (nebs) and IPV (with lots of suctioning as we go). The nebs and IPV run for 30-45 minutes. When she finishes these we flip her over, clear everything out as best as we can, change her diaper and clean up her surgery wounds and try to give her a little break. She has 3 hours from the time bipap stops until we have to get her back on. The morning break includes a round of xrays that are always hard on Casey. During the 2-2.5 hour break she tries to rest as much as she can. Today during her afternoon break some friends of hers came by and we were able to get her to sit up in her chair for about an hour.
She can sometimes get really freaked out when she is on bipap and trying to escape. Since it's subtle and unless you are right next to her you would not know, this means Tim or I have to be awake and just watch her during each session. I am so glad that he was able to take medical leave and be here with me. I can not imagine doing this with him still working during the day.
Each morning when the doctors come in to round we are hearing pretty much the same old story over and over again. The xray looks a little better, not much, but a little. As long as we are moving in the right direction we are happy. It just breaks our hearts to watch her work so hard all day/night and not get the results she deserves. Hopefully soon.
The other day (after losing her 4th IV) the doctor placed a fem line. We thought/hoped that would be the last IV for this stay. The fem line has officially failed and got pulled today. They placed a new fem line in her other leg this morning. We are at 20cc/hr on her feeds and advancing VERY slowly to help reduce pain issues. Until we are tolerating full feeds (30-40cc/hr) for more than 24 hours we will keep the fem line (or some line) in place for feeding her through the IV.
Casey is revving up for another night of hard work. They may try a different type of machine tomorrow (maybe) that will push the air into her lungs a little different. They are not sure if she will tolerate it though, so we will see how things go.
We had hoped that we would see Casey's PT today, and the hospital music therapy. Neither came by, so hopefully we will see them tomorrow. Casey still doesn't have her voice back, but I am sure she would love to listen and do what she can.
We just got some good news. Casey's friend, Guiliana, that was admitted on the dame day as Casey was able to go home today. I am sure they are all going to be VERY excited to be back home.
That's about it for today. Thank you again for the continued thoughts and prayers.
Tuesday, April 09, 2013
1 Week
We hit the 1 week mark today. Casey has been having some pain issues again over the past 24 hours. We have been trying to get her as comfortable as possible- without much luck so far.
The doctors have a few ideas to try and isolate the source of the pain. It could be so many things. We won't have more details on that right away, it may take the rest of the day/night. It could be related to feeding through the new J tube, it could be site pain from the closed G tube, it could be from the air pressure with the additional treatments, etc. We went back to 15cc/hr instead of 30 on her food and it may be helping. If the pain is from us going up too fast on the rate we can back off them go up again much slower. We'll see how she does on the lower rate over night.
Casey is still doing bipap and lots of respiratory treatments. Watching My Little Ponies helps pass the time. She got her wheelchair back from the shop today. Now that she has her chair we will try to get her up out of bed some tomorrow.
While watching ponies she got a surprise bouquet of pony balloons from her friends at Neotech. Thank you Neotech.
The doctors have a few ideas to try and isolate the source of the pain. It could be so many things. We won't have more details on that right away, it may take the rest of the day/night. It could be related to feeding through the new J tube, it could be site pain from the closed G tube, it could be from the air pressure with the additional treatments, etc. We went back to 15cc/hr instead of 30 on her food and it may be helping. If the pain is from us going up too fast on the rate we can back off them go up again much slower. We'll see how she does on the lower rate over night.
Casey is still doing bipap and lots of respiratory treatments. Watching My Little Ponies helps pass the time. She got her wheelchair back from the shop today. Now that she has her chair we will try to get her up out of bed some tomorrow.
While watching ponies she got a surprise bouquet of pony balloons from her friends at Neotech. Thank you Neotech.
Monday, April 08, 2013
Lungs Continued
Casey had a rough night. I was worried her morning X-ray was going to be horrible. It wasn't worse, but it was not really better either. The doctors decided we need to be more aggressive. Casey is on bipap for the night. We are doing 3 hours on 3 off to try and minimize any air pressure that could build up in her stomach. If she needs bipap Casey tolerates it pretty well. As soon as her lungs start to get stronger she starts to really fight it. She seemed really comfortable this round so I think it is what she needs- at least for now. During the 3 hours off she is doing lots of breathing treatments and IPV. We really hope we see some big improvements with tomorrow's X-ray.
The new j-tube is still going strong. Today her rate went up every 4 hours by 5cc. She recently got to 30cc. They want her to stay at 30 for 24 hours to see how it goes. She did have a BM on her own today- a big one at that.
On a good note, Casey's home nurse Emily came by to give us a much needed break to go home, shower, and eat. While we took a break they did a round of treatments and watched some ponies.
We need to get ready to start the next round of bipap. Hopefully tomorrows post will have some good news.
The new j-tube is still going strong. Today her rate went up every 4 hours by 5cc. She recently got to 30cc. They want her to stay at 30 for 24 hours to see how it goes. She did have a BM on her own today- a big one at that.
On a good note, Casey's home nurse Emily came by to give us a much needed break to go home, shower, and eat. While we took a break they did a round of treatments and watched some ponies.
We need to get ready to start the next round of bipap. Hopefully tomorrows post will have some good news.
Sunday, April 07, 2013
Big Day!
Last night was the first night all week that we were all able to get a little (not a lot) of sleep. Casey was more comfortable than she has been in a really long time. We are able to skip 1 treatment that results in about 6 hours that we don't have to mess with Casey. It was nice. We still have to suction, change diapers, etc. but we don't have to move her around and can let her sleep.
During Casey's xrays and treatments this morning, she got really worked up, and we were thinking it was going to be a rough day, but she hung in there and got through it. Her xrays again look about the same, maybe a little better, but that's two days in a row, and overall we think that she is breathing better. The rest of the day she did really good.
First, the doctors said Casey could have her nasal tube removed. It has been bugging her ever since she woke up from surgery with it in her nose. It also blocked the ability to deep suction and get her to give a really good cough. We are so much happier now that it's gone, and you can tell she is too.
The surgeon also gave the ok to remove her main bandages, so we got to see how well her old g-tube hole got stitched up (~15 stitches). It actually looks better than we expected, but we still have to keep an eye on it in case it doesn't heal all the way due to the damaged tissue that was against her rib for so long. We can't quite see the new j-tube stitches yet, but those should be much smaller and we should get to see those in the next few days.
For pain meds, the doctors are starting to reduce her morphine drip to see if she can tolerate less. So far she is doing good - heart rate staying down and she seems pretty comfortable. But we want to take this slow so her pain doesn't come back. Morphine also slows down the gut, and now that she is feeding a little with the j-tube, the doctors want her to continue passing things.
We are slowly increasing Casey's food per hour. She has been handling it really well so far. The doctors were all concerned about BM's (or lack there of) when increasing her rate. To get things started they gave Casey a little, productive help earlier today. We were worried about her straining or having a hard time, but she was able to go without much drama at all. Since then she has been passing gas off and on. It's funny how excited everyone gets around here over poop and gas.
Some friends stopped by through out the day to say hello and check in on the princess. Casey was kind of out of it most of the day. We appreciated the visitors, but I am not sure she knew they were here.
Although we still have a long way to go with her lungs, overall it was a great day for her!
Casey slept a lot today and woke up (WIDE awake) about 10PM tonight. She is happily watching her ponies now. We really hope that she goes back to sleep soon so that we can have another good night. We'll see.
Saturday, April 06, 2013
Good and Bad Day - we'll take it
Today started off kinda as we expected based on yesterday and last night - a lot of respiratory and pain issues, high heart rate, etc. and to top it off all three of us were particularly exhausted this morning. We have been doing the IPV lung treatments every 4 hours, as well as a few other things. Casey has been bouncing from being really upset during the treatments to exhausted after them, and then the cycle restarts. But we know from times before that we have to stay on top of this, even if it upsets her, or it can get worse pretty quick.
This morning's xray wasn't taken with the best angle, so the doctors will just say that it is about the same or slightly better than yesterday's - they want to see a few days in a row before they will stand behind any trend. We know the drill.
Some good news: Casey started getting very small amounts of formula in her new J-tube this afternoon. It will take at least a few days to build up to her target volume, as we have to watch for a number of issues that are common to this type of procedure, but so far it's going good!
The evening is ending well - Casey got some special get well treats from friends. And we are all hoping to get more rest tonight.
Casey's friend Guily is having her own good and bad days, so please continue to keep her in your thoughts.
This morning's xray wasn't taken with the best angle, so the doctors will just say that it is about the same or slightly better than yesterday's - they want to see a few days in a row before they will stand behind any trend. We know the drill.
Some good news: Casey started getting very small amounts of formula in her new J-tube this afternoon. It will take at least a few days to build up to her target volume, as we have to watch for a number of issues that are common to this type of procedure, but so far it's going good!
The evening is ending well - Casey got some special get well treats from friends. And we are all hoping to get more rest tonight.
Casey's friend Guily is having her own good and bad days, so please continue to keep her in your thoughts.
Friday, April 05, 2013
Lungs and IVs
We got Casey's pain meds managed much better yesterday, and she was sleeping great, but in the middle of the night she was non-stop with suctioning and crying. Her heart rate was up and quick shallow breaths. We could not get her to cough anything up, and the tube that is in her nose makes it very hard to get the suction catheter down her throat. We tried and tried to get her to cough, but no luck. The doctor ordered xrays to see what was going on, and we found out that Casey's left lung had completely collapsed and her right lung was about 20% collapsed.
One of the biggest risks we deal with for ANY procedure is the effects on Casey's fragile airway/lungs. We put off surgeries and anything that we don't absolutely HAVE to do in order to minimize that risk. The last time that we needed a procedure done that required intubation, we were in the hospital for a month with a collapsed lung, so although we always hope her lungs hold up, we aren't surprised when this happens anymore.
The issue this time is that the treatments for helping the lung require forcing in air to open things up, using either a BIPAP machine (we have one at home), or an IPV machine. Some air during the treatment leaks into the tummy as well, which is dangerous pressure given the extent of the abdominal surgery she just had. We are starting with the IPV approach, given that the treatments are much shorter and we have the nose tube to help vent excess air out of the stomach. It seems to be helping Casey with suctioning and she is breathing easier. But we really won't know progress until we start comparing xrays over the next few days. We are anxious to see tomorrows xrays and hoping we can stick with IPV.
Another major thing that happened today is she lost her only 2 IVs that are used for her nutrition (until her J-tube can be used), as well as pain and other medications. Both of these had major blow outs and caused her leg and arm to swell up a lot. Yesterday she had 2 other IVs blow out, but in much less dramatic fashion. So at one very stressful point today, we were left with no IVs at all for medicine, and very worried about her lungs.
We talked about placing the PICC line in her upper arm , but that would require putting Casey under anesthesia again, which would be even riskier with her current lung issues. They decided to place a femoral line instead - this is a larger sized IV in the upper thigh / groin area. These lines are hard to place, and have some risk with infections, etc. The good thing is that they last much longer and can handle a bigger load- including drawing blood for labs. We are hopeful that this will be the last stick and that we are set for IV needs moving forward.
If things go well over the next 1-2 days, they may try a very small amount of food in her new J-tube to see how it responds, but it's going to take a while to build up what she needs daily.
We will post more when we can. Again, thanks for the continued support. It really does help more than any of you can know.
One of the biggest risks we deal with for ANY procedure is the effects on Casey's fragile airway/lungs. We put off surgeries and anything that we don't absolutely HAVE to do in order to minimize that risk. The last time that we needed a procedure done that required intubation, we were in the hospital for a month with a collapsed lung, so although we always hope her lungs hold up, we aren't surprised when this happens anymore.
The issue this time is that the treatments for helping the lung require forcing in air to open things up, using either a BIPAP machine (we have one at home), or an IPV machine. Some air during the treatment leaks into the tummy as well, which is dangerous pressure given the extent of the abdominal surgery she just had. We are starting with the IPV approach, given that the treatments are much shorter and we have the nose tube to help vent excess air out of the stomach. It seems to be helping Casey with suctioning and she is breathing easier. But we really won't know progress until we start comparing xrays over the next few days. We are anxious to see tomorrows xrays and hoping we can stick with IPV.
Another major thing that happened today is she lost her only 2 IVs that are used for her nutrition (until her J-tube can be used), as well as pain and other medications. Both of these had major blow outs and caused her leg and arm to swell up a lot. Yesterday she had 2 other IVs blow out, but in much less dramatic fashion. So at one very stressful point today, we were left with no IVs at all for medicine, and very worried about her lungs.
We talked about placing the PICC line in her upper arm , but that would require putting Casey under anesthesia again, which would be even riskier with her current lung issues. They decided to place a femoral line instead - this is a larger sized IV in the upper thigh / groin area. These lines are hard to place, and have some risk with infections, etc. The good thing is that they last much longer and can handle a bigger load- including drawing blood for labs. We are hopeful that this will be the last stick and that we are set for IV needs moving forward.
If things go well over the next 1-2 days, they may try a very small amount of food in her new J-tube to see how it responds, but it's going to take a while to build up what she needs daily.
We will post more when we can. Again, thanks for the continued support. It really does help more than any of you can know.
Thursday, April 04, 2013
Long Day
Casey had a rough night again last night and it bled into the morning & afternoon. They increased her morphine again and added a sedative to help to the edge off as needed. Those seem to be helping.
Since we have to wait on the new tube to heal before we can use it Casey has been getting her nutrition through an IV. IV's are tricky with Casey's complex little body. They usually only last 24-36 hours and are very hard to place. She got one in pre-op and a second one during her surgery Tuesday. Those failed today and a 3rd IV was placed. For various reasons, she now has to get a special kind of IV called a PICC (you may remember we have tried this unsuccessfully before). The PICC team again could not find a vein big enough so they called in the nicu (infants) PICC team. They gave it a good try, but it did not work. Casey will have to go to interventional radiology under sedation sometime tomorrow to have it done with real-time imaging. We don't have all the details yet.
We are hoping for a better night with the new meds. Thanks again for the continued thoughts & prayers.
Since we have to wait on the new tube to heal before we can use it Casey has been getting her nutrition through an IV. IV's are tricky with Casey's complex little body. They usually only last 24-36 hours and are very hard to place. She got one in pre-op and a second one during her surgery Tuesday. Those failed today and a 3rd IV was placed. For various reasons, she now has to get a special kind of IV called a PICC (you may remember we have tried this unsuccessfully before). The PICC team again could not find a vein big enough so they called in the nicu (infants) PICC team. They gave it a good try, but it did not work. Casey will have to go to interventional radiology under sedation sometime tomorrow to have it done with real-time imaging. We don't have all the details yet.
We are hoping for a better night with the new meds. Thanks again for the continued thoughts & prayers.
Wednesday, April 03, 2013
A Little Better
This morning started out a bit rough after a really long night. I laid down to get some sleep while Tim sat with Casey. I was so happy to wake up to a much happier baby. I think she just wanted some daddy time.
She was still a little restless, but settled down and got some rest from 9-11ish. Sadly right as she settled down she had a visitor (her friend Marion's family). I wish we could have visited, but we had to decline since she just got to sleep.
Later this morning/early afternoon she had a few more visitors ( in addition to a constant stream of doctors, nurses & therapist). Aunt Megan and Cappy came by to see how she is doing. Emily, her nurse, came by with a surprise (balloons, pony toys and a bear) from some of the staff at our home health agency. She was so tired that you could see the excitement in her eyes, but she didn't have the energy to say much. Thank you Emily, Ely, Holly and Jennifer.
We just received a stack of cards sent to her as well. Thank you Lockes, Ghoshes & Nedrows.
Casey rested during most of the morning. She woke up about an hour ago and has been watching her ponies. Her team is staying on top of her pain meds and things are going better today. They are going to start some iv nutrition this evening. Her new tube site needs to heal before we can feed her with the j tube. It will be a few days. Between now and then we are just focused on keeping her comfortable.
Thank you all again for the continued thoughts & prayers (for Casey's little friend Guili too). We really appreciate all of the support & we are very fortunate to have such amazing family & friends.
She was still a little restless, but settled down and got some rest from 9-11ish. Sadly right as she settled down she had a visitor (her friend Marion's family). I wish we could have visited, but we had to decline since she just got to sleep.
Later this morning/early afternoon she had a few more visitors ( in addition to a constant stream of doctors, nurses & therapist). Aunt Megan and Cappy came by to see how she is doing. Emily, her nurse, came by with a surprise (balloons, pony toys and a bear) from some of the staff at our home health agency. She was so tired that you could see the excitement in her eyes, but she didn't have the energy to say much. Thank you Emily, Ely, Holly and Jennifer.
We just received a stack of cards sent to her as well. Thank you Lockes, Ghoshes & Nedrows.
Casey rested during most of the morning. She woke up about an hour ago and has been watching her ponies. Her team is staying on top of her pain meds and things are going better today. They are going to start some iv nutrition this evening. Her new tube site needs to heal before we can feed her with the j tube. It will be a few days. Between now and then we are just focused on keeping her comfortable.
Thank you all again for the continued thoughts & prayers (for Casey's little friend Guili too). We really appreciate all of the support & we are very fortunate to have such amazing family & friends.
Rough Night
Casey had a rough night, but her numbers look ok right now. They bumped up her continuous morphine rate, so between that and her just being exhausted, she is finally trying to get some sleep (and Marty is out too).
One of Casey's friends unfortunately checked into ICU yesterday too. Please keep Giuliana in your thoughts as well.
One of Casey's friends unfortunately checked into ICU yesterday too. Please keep Giuliana in your thoughts as well.
Tuesday, April 02, 2013
Resting in her Room
We have been in the ICU since our last post. Casey is having a hard time getting comfortable. Her heart rate has been elevated and she has been a bit whiny (all signs that she's having pain). She's getting continuous Morphine now and frequent additional doses. Her heart rate is very slowly coming down. When her pain gets away from us she often has seizures. The past hour or two she has had a few seizures. Hopefully the pain will level off soon so she can get some sleep.
Out of Surgery
Casey is out of surgery - it went a little longer than expected but not much. No serious blood loss and they already extubated her. The new J-tube went in fine. There is some concern on how the old G-tube site got closed up, due to the amount of damaged tissue, but they are keeping an eye on it. Now we settle in for recovery, try to keep on top of pain meds (she is pretty doped right now). We are in the ICU mainly to watch her lungs, since they always have a hard time with intubation. Thanks for all the thoughts and prayers!
Surgery Underway
Casey was really brave in pre-op. They just took her to surgery. Her home nurse Emily was able to walk back to the surgery room with her - they talked about My Little Ponies until anesthesia knocked her out. Now the hard part of waiting...
Surgery Day
Today is the day. We are heading to the hospital. We went in last week to do the pre-admit paperwork to speed things up this morning. Tim and I did not sleep much at all last night. Luckily, Casey did sleep pretty well.
Yesterday was a really bad day, one of her worst in a while. The bleeding and pain were both bad. Days like yesterday are why we are doing this. I just want to have the procedure done, Casey on her way to recovery and the pain to stop. The last month has been really hard on all of us. When we really think about it though, this procedure has been on our horizon for years.
Here is to a successful procedure and smooth recovery. Thank you to all of our friends and family that have been thinking about Casey, praying for her, and sending her warm wishes and care packages. We are very lucky to have such wonderful people in our lives (even those of you that we don't know personally that are thinking about and praying for her).
Yesterday was a really bad day, one of her worst in a while. The bleeding and pain were both bad. Days like yesterday are why we are doing this. I just want to have the procedure done, Casey on her way to recovery and the pain to stop. The last month has been really hard on all of us. When we really think about it though, this procedure has been on our horizon for years.
Here is to a successful procedure and smooth recovery. Thank you to all of our friends and family that have been thinking about Casey, praying for her, and sending her warm wishes and care packages. We are very lucky to have such wonderful people in our lives (even those of you that we don't know personally that are thinking about and praying for her).
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