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.
