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.
Thursday, April 11, 2013
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).
Friday, March 29, 2013
All Clear
We had our pre-op visit today with anesthesia. It went well. The nurse listened very carefully as I went over all of the complex issues that they are going to be dealing with. She quickly identified that Casey is not a typical patient and that they need to be prepared. She pulled the anesthesiologist into the room to listen to all of the details as well. I feel like they listened, they took it very seriously, and that they are going to do a good job.
As much as I hate the thought of surgery at all, I did tell Tim just last night that I have no doubts that we are doing the right thing. It maybe that we don't really have any other options so we know it is the right thing, but regardless I feel like we have selected a good team to carry it out and tend to her needs during and after the procedure.
We are going to spend the next few days just letting Casey do what ever makes her happy (pretty much a normal day- we always do what Casey wants). Next week is going to be scary, stressful and exhausting. I feel okay with everything though and I am looking forward to having my happy Casey back soon. This constant pain has got to go. Please keep Casey in your thoughts and prayers. It is going to be a hard procedure and recovery and we can use all the extra positive thoughts we can get.
As much as I hate the thought of surgery at all, I did tell Tim just last night that I have no doubts that we are doing the right thing. It maybe that we don't really have any other options so we know it is the right thing, but regardless I feel like we have selected a good team to carry it out and tend to her needs during and after the procedure.
We are going to spend the next few days just letting Casey do what ever makes her happy (pretty much a normal day- we always do what Casey wants). Next week is going to be scary, stressful and exhausting. I feel okay with everything though and I am looking forward to having my happy Casey back soon. This constant pain has got to go. Please keep Casey in your thoughts and prayers. It is going to be a hard procedure and recovery and we can use all the extra positive thoughts we can get.
Wednesday, March 27, 2013
Pulmonary Cleared
Pulmonary has officially cleared Casey for surgery. We found out her pulmonologist will be on call next week too, that's good news.
We see anesthesia Friday to go over Casey's complex needs & history then we are all set.
We see anesthesia Friday to go over Casey's complex needs & history then we are all set.
Sunday, March 24, 2013
Egg Hunt
Casey was doing okay yesterday morning so we decided to take her to the All Abilities Park in Round Rock for an Easter egg hunt. Some of our friends met us there and loaned us a "little sister" helper to collect Casey's eggs. We were a little late getting out the door, and only stayed for a few minutes, but it was nice to do something fun. Casey had lots of stickers in her eggs and a purple necklace. She was thrilled- and of course she got to see some of her friends.
Wheelchair
The wheelchair FINALLY came in last week. Since Casey has not been up for much we have not really had a chance to fully evaluate it. She fits much better. We have a few issues that we have contacted the company about. We hope to get the issues resolved quickly. We'll try to get a picture of it and her in it soon. It's very pink- surprise :)
Saturday, March 23, 2013
Surgery
WARNING- This post contains medical details and may not be suitable content for all readers.
Many of you have been following Casey since the beginning. For those of you that have not, or anyone just wanting a refresher, I am going to give some background of how we got to where we are today. Again, this post is going to contain a lot of details that the sensitive readers may not wish to read. Continue reading at your own risk.
Casey was born with out the ability to gag, suck or swallow and had SEVERE reflux/GERD. In order for Casey to be able to get any type of nutrition she under went a surgery when she was 1 month old. This surgery placed a gtube and fundoplication. This was a routine procedure and was expected to last about 2 hours. Everything that could go wrong, did go wrong. It was more than 8 hours later before we were able to see Casey again. The gtube was placed so that she could get food directly into her stomach without needing to use her mouth/swallow. And the fundo was done, but never tight enough to stop or greatly reduce the amount of reflux. It reduced it some, but not much.
Since the fundo was not tight enough, we were never able to feed Casey more than around an ounce an hour. This is not much, a typical can of soda is 8 ounces. The forst 2 years we were not able to go over 20cc (30cc is 1 ounce) and over the past couple of years we have been feeding her at a rate of 40cc an hour. In order to get her enough food so that she is not starving and able to grow some we have to do what is called continuous feeds (she is hooked up to a feeding pump almost around the clock).
As Casey grew her chest became mis-shaped (sometimes referred to as barrel or pigeon chested- basically very narrow and sticks out front and back instead of wide). As Casey's chest changed her gtube no longer sat flush against the inside of her stomach. It started before she was 2, and we noticed the gtube leaked. We did our best to deal with it and keep as much of her food and medicine inside her stomach. The leak continued to get worse and worse (as did her chest). In 2009 we noticed in addition to food leaking, she was bleeding in her stomach as well.
Casey had an endoscopy in late 2009 to determine the cause of the bleeding. At this time we learned that the balloon on her gtube was rubbing the inside of her stomach. The tube placement made it so that it was below her ribs on the outside of her skin, but then went up at an angle underneath the rib and into her stomach. This angle rubbed a lot and over time caused an ulcer along her stomach wall. Certain and/or frequent movements can cause this ulcer to bleed. Blood in your stomach can cause a lot of nausea, pain, and digestive issues. Since the bleed was not constant and the risk of surgery to move the gtube was so high, we were sent home with medication to help with the side effects of the bleed. We found ourselves back in the hospital only a few days later with a collapsed lung as a result of intuabtion for the endoscopy. We spent a month in ICU trying to get Casey's lung to open back up. We went home with bipap, oxygen and all kinds of respiratory issues. After a few months at home Casey was able to get her lung opened back up and she was able to stop using bipap every night. Now she uses bipap when she has pneumonia or any other pulmonary complication.
We have been dealing with the leak and the bleed for many years. Each growth spurt causes Casey's tube to go further and further under her ribs. The surgery to redo it is a huge a risk, so we have been doing everything in our power to make it work. Over the past 6 months Casey has started having frequent pain issues at the gtube site. They started out every now and then and have been getting more and more frequent. The past month has been really bad. Casey is in a lot of pain and the gtube is with out a doubt the cause (or at least the main cause). We can take the tube out from time to time to give her a little break, but in order to eat and get her medication we have to put it back in. The leaking has caused other issues with seizures as well. Since she has not been able to keep all of her medications in place we have seen MANY more seizures over the past year (even with increased dosing).
We have not been able to manage Casey's pain anymore with Tylenol or Vicodin. We can not give her ibuprofen since it can irritate GI bleeding. For the past few weeks we have had to give Casey morphine in order to help keep her pain under control. Sitting up, or putting pressure on the stomach in any way, seems to be the worst. We have had to cancel many therapies, dance, etc. just due to her being in pain and not able to sit in her wheelchair.
The gtube issues have gotten to a point where we can no longer put off surgery. We could do with leaks, we could deal bleeding, we CANNOT deal with pain. There is not reason for her to ever be in pain like this. We spent the past week talking with many of her doctors (Casey has quite a few that all contribute to her comfort and care).
We have come up with a plan and it is going to be a really hard procedure and recovery. Even minor procedures (like an endoscopy) are risky and can cause a lot of issues for Casey. This will be the first major surgery she has had in many years. The last major surgery she had was her feet when she was only 18 months old. This is a big deal, and very scary for all of us.
The surgeon will go in and close up Casey's gtube site. By closing the site we will no longer have any pressure against her ribs. We still need to be able to feed her however. We talked about moving her stomach and redoing the gtube, but this would be VERY hard on Casey. All of the nerves that control the stomach function could potentially stop working, and all of the surrounding organs and tissues may have issues as well from moving the stomach. The surgeon felt that with Casey's chest, size and complex anatomy that the only way that she would be able to redo a gtube would include removing her 2 lower ribs (very painful). That was not an option for us. We could not put Casey through that and the recovery would just simply be too much. Our second option is to close the G and instead place a J (not to be confused with a GJ). A G tube goes directly to the stomach; a GJ goes into the stomach just like a G, but has a cable that then runs out of the stomach and into the jejunum; and a J tube bypasses the stomach all together and goes directly into the jejunum.
The stomach still produces waste and there will still be drainage into the stomach. The stomach needs to be able to empty this waste, and if the digestive tract has issues sometimes people use G tubes to drain instead of feed. Also, there are some medications that can not be given in the J tube for absorption. We had a GI series done on Wednesday and Casey's stomach is emptying- very good news. We also checked all of her medications and they can be given in the J. Some concerns people have with a J vs a G is that you can not do large/fast feeds with a J. People that have a J tube have to be on continuous feeds- no big deal, we have been doing that her entire life. A J tube can take 60-90cc and hour. Some people with a J tube have issues with the ER staff not being prepared to deal with their needs. The ER already freaks out when we come in with Casey with all of her other needs, so we can handle this one too. The jejunum absorbs things much slower than the stomach. As long as we keep a close on eye on her weight and intake we should not have any major issues. If at anytime we do need access to her stomach (to empty or to give meds that can't go in the J) we will have to place an NG tube (from her nose to her stomach). These can cause calcification along the esophagus and can interfere with the nasal airway. Casey already has calcification in her esophagus from frequent reflux and suctioning. We hope that our need/use of an NG will be limited and rare.
Casey is scheduled for the first week in April. We hope that she will be back home by her birthday. As long as the procedure goes as planned and she does not have any respiratory complications we think being home before her birthday is very likely. Until she gets into surgery though, we just have no idea how well she will do.
Many of you have already asked what you can do. We will update here as often as we can during the procedure and recovery. Casey can use all the positive thoughts, prayers, etc that you all can manage. This surgery is necessary, but it is not going to be easy. The day of the procedure they only allow 2 people in pre and post op. When she is recovering in her room she can have visitors. Or, if you are not local, you can send her a card. The hospital offers virtual cards as well- fun, easy and free. You can always sign her guestbook. We do read all of the entries to her. She will likely be in the ICU where they do not allow flowers, please do not send her any flowers or plants.
This will be the best place to get the latest updates directly from us. We have a lot of family and friends that all care deeply about Casey. We can not call all of you with details. Please help us by checking here first. We will posy as often as we can.
Many of you have been following Casey since the beginning. For those of you that have not, or anyone just wanting a refresher, I am going to give some background of how we got to where we are today. Again, this post is going to contain a lot of details that the sensitive readers may not wish to read. Continue reading at your own risk.
Casey was born with out the ability to gag, suck or swallow and had SEVERE reflux/GERD. In order for Casey to be able to get any type of nutrition she under went a surgery when she was 1 month old. This surgery placed a gtube and fundoplication. This was a routine procedure and was expected to last about 2 hours. Everything that could go wrong, did go wrong. It was more than 8 hours later before we were able to see Casey again. The gtube was placed so that she could get food directly into her stomach without needing to use her mouth/swallow. And the fundo was done, but never tight enough to stop or greatly reduce the amount of reflux. It reduced it some, but not much.
Since the fundo was not tight enough, we were never able to feed Casey more than around an ounce an hour. This is not much, a typical can of soda is 8 ounces. The forst 2 years we were not able to go over 20cc (30cc is 1 ounce) and over the past couple of years we have been feeding her at a rate of 40cc an hour. In order to get her enough food so that she is not starving and able to grow some we have to do what is called continuous feeds (she is hooked up to a feeding pump almost around the clock).
As Casey grew her chest became mis-shaped (sometimes referred to as barrel or pigeon chested- basically very narrow and sticks out front and back instead of wide). As Casey's chest changed her gtube no longer sat flush against the inside of her stomach. It started before she was 2, and we noticed the gtube leaked. We did our best to deal with it and keep as much of her food and medicine inside her stomach. The leak continued to get worse and worse (as did her chest). In 2009 we noticed in addition to food leaking, she was bleeding in her stomach as well.
Casey had an endoscopy in late 2009 to determine the cause of the bleeding. At this time we learned that the balloon on her gtube was rubbing the inside of her stomach. The tube placement made it so that it was below her ribs on the outside of her skin, but then went up at an angle underneath the rib and into her stomach. This angle rubbed a lot and over time caused an ulcer along her stomach wall. Certain and/or frequent movements can cause this ulcer to bleed. Blood in your stomach can cause a lot of nausea, pain, and digestive issues. Since the bleed was not constant and the risk of surgery to move the gtube was so high, we were sent home with medication to help with the side effects of the bleed. We found ourselves back in the hospital only a few days later with a collapsed lung as a result of intuabtion for the endoscopy. We spent a month in ICU trying to get Casey's lung to open back up. We went home with bipap, oxygen and all kinds of respiratory issues. After a few months at home Casey was able to get her lung opened back up and she was able to stop using bipap every night. Now she uses bipap when she has pneumonia or any other pulmonary complication.
We have been dealing with the leak and the bleed for many years. Each growth spurt causes Casey's tube to go further and further under her ribs. The surgery to redo it is a huge a risk, so we have been doing everything in our power to make it work. Over the past 6 months Casey has started having frequent pain issues at the gtube site. They started out every now and then and have been getting more and more frequent. The past month has been really bad. Casey is in a lot of pain and the gtube is with out a doubt the cause (or at least the main cause). We can take the tube out from time to time to give her a little break, but in order to eat and get her medication we have to put it back in. The leaking has caused other issues with seizures as well. Since she has not been able to keep all of her medications in place we have seen MANY more seizures over the past year (even with increased dosing).
We have not been able to manage Casey's pain anymore with Tylenol or Vicodin. We can not give her ibuprofen since it can irritate GI bleeding. For the past few weeks we have had to give Casey morphine in order to help keep her pain under control. Sitting up, or putting pressure on the stomach in any way, seems to be the worst. We have had to cancel many therapies, dance, etc. just due to her being in pain and not able to sit in her wheelchair.
The gtube issues have gotten to a point where we can no longer put off surgery. We could do with leaks, we could deal bleeding, we CANNOT deal with pain. There is not reason for her to ever be in pain like this. We spent the past week talking with many of her doctors (Casey has quite a few that all contribute to her comfort and care).
We have come up with a plan and it is going to be a really hard procedure and recovery. Even minor procedures (like an endoscopy) are risky and can cause a lot of issues for Casey. This will be the first major surgery she has had in many years. The last major surgery she had was her feet when she was only 18 months old. This is a big deal, and very scary for all of us.
The surgeon will go in and close up Casey's gtube site. By closing the site we will no longer have any pressure against her ribs. We still need to be able to feed her however. We talked about moving her stomach and redoing the gtube, but this would be VERY hard on Casey. All of the nerves that control the stomach function could potentially stop working, and all of the surrounding organs and tissues may have issues as well from moving the stomach. The surgeon felt that with Casey's chest, size and complex anatomy that the only way that she would be able to redo a gtube would include removing her 2 lower ribs (very painful). That was not an option for us. We could not put Casey through that and the recovery would just simply be too much. Our second option is to close the G and instead place a J (not to be confused with a GJ). A G tube goes directly to the stomach; a GJ goes into the stomach just like a G, but has a cable that then runs out of the stomach and into the jejunum; and a J tube bypasses the stomach all together and goes directly into the jejunum.
The stomach still produces waste and there will still be drainage into the stomach. The stomach needs to be able to empty this waste, and if the digestive tract has issues sometimes people use G tubes to drain instead of feed. Also, there are some medications that can not be given in the J tube for absorption. We had a GI series done on Wednesday and Casey's stomach is emptying- very good news. We also checked all of her medications and they can be given in the J. Some concerns people have with a J vs a G is that you can not do large/fast feeds with a J. People that have a J tube have to be on continuous feeds- no big deal, we have been doing that her entire life. A J tube can take 60-90cc and hour. Some people with a J tube have issues with the ER staff not being prepared to deal with their needs. The ER already freaks out when we come in with Casey with all of her other needs, so we can handle this one too. The jejunum absorbs things much slower than the stomach. As long as we keep a close on eye on her weight and intake we should not have any major issues. If at anytime we do need access to her stomach (to empty or to give meds that can't go in the J) we will have to place an NG tube (from her nose to her stomach). These can cause calcification along the esophagus and can interfere with the nasal airway. Casey already has calcification in her esophagus from frequent reflux and suctioning. We hope that our need/use of an NG will be limited and rare.
Casey is scheduled for the first week in April. We hope that she will be back home by her birthday. As long as the procedure goes as planned and she does not have any respiratory complications we think being home before her birthday is very likely. Until she gets into surgery though, we just have no idea how well she will do.
Many of you have already asked what you can do. We will update here as often as we can during the procedure and recovery. Casey can use all the positive thoughts, prayers, etc that you all can manage. This surgery is necessary, but it is not going to be easy. The day of the procedure they only allow 2 people in pre and post op. When she is recovering in her room she can have visitors. Or, if you are not local, you can send her a card. The hospital offers virtual cards as well- fun, easy and free. You can always sign her guestbook. We do read all of the entries to her. She will likely be in the ICU where they do not allow flowers, please do not send her any flowers or plants.
This will be the best place to get the latest updates directly from us. We have a lot of family and friends that all care deeply about Casey. We can not call all of you with details. Please help us by checking here first. We will posy as often as we can.
Tuesday, March 12, 2013
No More Cast!!!
Casey had her cast removed yesterday. She was not real happy about getting another xray. The xray process is always so hard on her. People never seem to understand that she does not bend and can't be positioned the way they want her. We got through it though and her foot is healed. We officially came home with a new diagnosis as well. Not a surprise. This diagnosis is something we have been dealing with for years, we just did not have the official diagnosis on her chart until now. It will not change our care plan at all. Casey has what is called Osteopenia. It is basically brittle bones from lack of use as opposed to Osteogenesis Imperfecta(OI) which is a genetic brittle bone disease or Osteoporosis which is more common with older individuals. Casey's list of diagnosis grows pretty much every year. Some years we just add 1 or 2 new things (and sometimes minor things) where other years we add many more and/or more serious issues. Long story short, we were kind of expecting this one to be added. As long as her cast is off and her foot is fine all is well. We have a few appointments over the next week. We'll try to get another update for everyone soon. Hopefully we will finally have pictures of the long awaited wheelchair to share too.
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