Phoebe updates-updated 12/20
Nov 15, 2015 17:02:35 GMT
georgiee, lindywholoveskids, and 1 more like this
Post by shescrafty on Nov 15, 2015 17:02:35 GMT
Since the other thread was so long, I was asked to make a new thread for those that would like updates.
Sunday 11/15
Phoebe has been on a ventilator for one week. We came to the PICU because she was having seizures. The medicine that they had to use had them concerned about her airway, so they put a breathing tube in. We were told it would be temporary and only for a few days. Then the ventilator tube caused an infection and she developed pneumonia.
The pneumonia seems to be getting worse each day. She is on every antibiotic, anti fungal, etc that they can think of. Today the chest X-Ray showed that there was air escaping from her lungs and going into her tissue. They may have to do a bronchoscopy (sp?) to see if there is intestinal bacteria that is causing this.
We are just so overwhelmed that we get more and more bad news everyday. We can tell she wants to not be sedated anymore-she can react to us even on the sedation-but now her lungs are too damaged and cannot handle her breathing on her own completely. Without the sedation they fear that she would get too agitated and try and rip the tube out, so she remains sedated.
This whole journey has been devastating. Last Saturday we were talking with our doctors about a plan for going home, and the next day we were in the PICU again and now it seems we have no end in sight. It is immensely hard not having any answers and seeing a daily decline.
Please continue to keep her in your thoughts and prayers, we have a long road ahead of us.
6pm 11/15
Phoebe had to go into surgery-very fast. They think she has a perforation somewhere in her bowel or intestines They just took her back and we don't know exactly where it is it what exactly they will do-they have to find it first. We do not know all the details because try have to get in first and see where it is and how big, etc. Will update when we know
11/16
surgery actually went well and they found no perforations or inflammation anywhere along her intestines. She has a large vertical incision on her abdomen below her rib cage. That was good news and the Dr. that all of her intestines looked good.
After surgery we came back to our room in the PICU and after rounds with the doctors I went to sleep around 10-I was exhausted. At 11:30!inwas women up by a doctor who told me they had to insert a chest tube I to her lung to help the collapse. So at midnight they were doing that to my girl. They were done around 1am and I was asleep by 2.
throughout all of this she has remained so strong. I just don't know how much more her little body can take. We are asking so much of her. Reading all the kind words really does help so thank you so much.
This morning her chest X-Ray did look better so at least we are hoping that some of what they are doing will finally start to work.
11/19
Phoebe's lungs have been doing better and they dropped her sedation down even more today in the hopes of removing the tube and having her breathe on her own. They want her to be eyes open awake and even with almost 4 hours of very decreased sedation she can't seem to get them open. She is nodding to some questions but can't seem to make the transition to all the way conscious so they won't remove the tube yet. So frustrating because we thought today would be the day
please send her good "wake up and open up your eyes" vibes and prayers so that we can move forward. I will update when we are on our next step and hoping to move out of the PICU, but without open eyes we can't even think about moving back to a regular room.
11/19 update again
she did not open her eyes. She is back on the ventilator and we have to see what happens next. I am devastated that she could not open her eyes, I really miss her so much and had gotten hopeful that she would be off the tube today. So sad and disappointed.
11/22
They were able to remove the breathing tube-so far so good. Now we have to wait and see how she is neurologically. Send her brain healing and strength so she can communicate once again!
11/23
Yesterday afternoon she was really struggling and they had to put her on more oxygen and then a bipap machine overnight. She is still really having a hard time with her left lung (last wek it was the right). I am just hoping and praying they do not have to out her back on the breathing tube. I am also hoping for some neurological progress. thank you so very much for your good thoughts and wishes. This journey is so hard and seemingly endless. I just want to take steps forward without them always bringing steps back at the same time. Maybe that is unrealistic, but it is my hope.
11/27 Friday
She has been able to keep breathing on her own and NOT go back on the breathing tube. They have her using a bipap machine at night and nasal cannula in the daytime. She is on "room air" and has not needed added oxygen which we are thankful for.
Our main issue has switched and now she was having massive and constant diarrhea (sorry for the tmi). She has tested positive for norovirus and they stopped the feedings they were giving her from an NG tube for at least 72 hours. She is already so weak and the constant bathroom needs have left her bottom area
raw and bleeding. We have a wound care regimen in place and after 2 medication errors in 24 hours I have insisted she have one nurse dedicated only to her rather than shared. They are going back and forth about how long that can last, but I am now timing everything and taking photographs constantly. I hate to be that way but I have to protect her any way I can.
I am trying to keep in mind that this too shall pass, I just wish when it did something worse would not be waiting around the corner. :/
Update 12/8
Thank you all for thinking of us!
As of last Thursday evening we are out of the PICU. She is getting stronger each day.
The almost 4 weeks in the PICU have virtually destroyed all muscle strength she had so she is very weak and has to relearn just about everything (eating, swallowing, reading, colors, sitting up, etc.)
I will say as daunting as that is, I can't praise my little girl's tenacity enough. She has been through so much and has to work hard for everything she ever does. Especially now even the smallest tasks like holding her head up independently are monumental. She is a fighter and I wish everyday that her sheer determination was enough to cure her, because if it was we would be at home by now.
Our newest hurdle is getting her ready for a bone marrow transplant. She has to be stronger and hopefully eating again instead of getting formula through an NG tube, and they want her possibly walking again. We may have to go to a children's rehab hospital for a few weeks which comes with its own challenges. That was presented to us today and we have to investigate further. The idea of being away from our hospital "home" where they know us so well is frightening, as is the idea of going to transplant as weak as she is. Lots of soul searching today as we are stuck between a rock and a hard place with this decision,
If you pray or send good thoughts, please send Phoebe all the strength she needs to move forward as we look towards transplant- we need all the extra help we can get!
UPDATE 12/20
You all checking in really is so sweet-thank you so much!
We are still on the regular floor. We visited a rehab facility in the hopes that Phoebe could go there to get stronger before transplant, but she is not medically stable enough at this point.
She continues to work hard each day and gain things little by little. It is so hard watching her be so confused all the time, and just being so sad on a regular basis. At this point nothing brings her any joy or happiness-no smiles at all. We have to remember that the neurologists feel that the seizures caused setbacks that are reversible, but it takes (and will continue to take) so long for her to even get back to the baseline she was before the seizures. I had to remind myself that last month at this date she was still intubated. Now she is talking and starting to gain strength in her left arm and hand more.
Being on this floor with much better care the wounds on her bottom have started to heal somewhat. The other good thing is that she is regaining the sensation of when she needs to go to the bathroom. We know when she has to because she is so nervous about going because of pain that her heart rate skyrockets. She has asked to get down when she has to go so she can go to the bathroom, but she is not strong enough yet to sit on the toilet and balance, so she still needs to use a diaper. We look at the sensation coming back as a good sign, but I know she is scared and frustrated with the pain.
I think what continues to be hard is that we have no idea when this will end. We have been here since September 5 with no end in sight. She wants to go home and I want her healthy. I just wish I knew how this story would end and could look forward to something. We can't wait to get home and have a giant redo party for her so we can actually celebrate her birthday and Christmas and just being out of here.
Sunday 11/15
Phoebe has been on a ventilator for one week. We came to the PICU because she was having seizures. The medicine that they had to use had them concerned about her airway, so they put a breathing tube in. We were told it would be temporary and only for a few days. Then the ventilator tube caused an infection and she developed pneumonia.
The pneumonia seems to be getting worse each day. She is on every antibiotic, anti fungal, etc that they can think of. Today the chest X-Ray showed that there was air escaping from her lungs and going into her tissue. They may have to do a bronchoscopy (sp?) to see if there is intestinal bacteria that is causing this.
We are just so overwhelmed that we get more and more bad news everyday. We can tell she wants to not be sedated anymore-she can react to us even on the sedation-but now her lungs are too damaged and cannot handle her breathing on her own completely. Without the sedation they fear that she would get too agitated and try and rip the tube out, so she remains sedated.
This whole journey has been devastating. Last Saturday we were talking with our doctors about a plan for going home, and the next day we were in the PICU again and now it seems we have no end in sight. It is immensely hard not having any answers and seeing a daily decline.
Please continue to keep her in your thoughts and prayers, we have a long road ahead of us.
6pm 11/15
Phoebe had to go into surgery-very fast. They think she has a perforation somewhere in her bowel or intestines They just took her back and we don't know exactly where it is it what exactly they will do-they have to find it first. We do not know all the details because try have to get in first and see where it is and how big, etc. Will update when we know
11/16
surgery actually went well and they found no perforations or inflammation anywhere along her intestines. She has a large vertical incision on her abdomen below her rib cage. That was good news and the Dr. that all of her intestines looked good.
After surgery we came back to our room in the PICU and after rounds with the doctors I went to sleep around 10-I was exhausted. At 11:30!inwas women up by a doctor who told me they had to insert a chest tube I to her lung to help the collapse. So at midnight they were doing that to my girl. They were done around 1am and I was asleep by 2.
throughout all of this she has remained so strong. I just don't know how much more her little body can take. We are asking so much of her. Reading all the kind words really does help so thank you so much.
This morning her chest X-Ray did look better so at least we are hoping that some of what they are doing will finally start to work.
11/19
Phoebe's lungs have been doing better and they dropped her sedation down even more today in the hopes of removing the tube and having her breathe on her own. They want her to be eyes open awake and even with almost 4 hours of very decreased sedation she can't seem to get them open. She is nodding to some questions but can't seem to make the transition to all the way conscious so they won't remove the tube yet. So frustrating because we thought today would be the day
please send her good "wake up and open up your eyes" vibes and prayers so that we can move forward. I will update when we are on our next step and hoping to move out of the PICU, but without open eyes we can't even think about moving back to a regular room.
11/19 update again
she did not open her eyes. She is back on the ventilator and we have to see what happens next. I am devastated that she could not open her eyes, I really miss her so much and had gotten hopeful that she would be off the tube today. So sad and disappointed.
11/22
They were able to remove the breathing tube-so far so good. Now we have to wait and see how she is neurologically. Send her brain healing and strength so she can communicate once again!
11/23
Yesterday afternoon she was really struggling and they had to put her on more oxygen and then a bipap machine overnight. She is still really having a hard time with her left lung (last wek it was the right). I am just hoping and praying they do not have to out her back on the breathing tube. I am also hoping for some neurological progress. thank you so very much for your good thoughts and wishes. This journey is so hard and seemingly endless. I just want to take steps forward without them always bringing steps back at the same time. Maybe that is unrealistic, but it is my hope.
11/27 Friday
She has been able to keep breathing on her own and NOT go back on the breathing tube. They have her using a bipap machine at night and nasal cannula in the daytime. She is on "room air" and has not needed added oxygen which we are thankful for.
Our main issue has switched and now she was having massive and constant diarrhea (sorry for the tmi). She has tested positive for norovirus and they stopped the feedings they were giving her from an NG tube for at least 72 hours. She is already so weak and the constant bathroom needs have left her bottom area
raw and bleeding. We have a wound care regimen in place and after 2 medication errors in 24 hours I have insisted she have one nurse dedicated only to her rather than shared. They are going back and forth about how long that can last, but I am now timing everything and taking photographs constantly. I hate to be that way but I have to protect her any way I can.
I am trying to keep in mind that this too shall pass, I just wish when it did something worse would not be waiting around the corner. :/
Update 12/8
Thank you all for thinking of us!
As of last Thursday evening we are out of the PICU. She is getting stronger each day.
The almost 4 weeks in the PICU have virtually destroyed all muscle strength she had so she is very weak and has to relearn just about everything (eating, swallowing, reading, colors, sitting up, etc.)
I will say as daunting as that is, I can't praise my little girl's tenacity enough. She has been through so much and has to work hard for everything she ever does. Especially now even the smallest tasks like holding her head up independently are monumental. She is a fighter and I wish everyday that her sheer determination was enough to cure her, because if it was we would be at home by now.
Our newest hurdle is getting her ready for a bone marrow transplant. She has to be stronger and hopefully eating again instead of getting formula through an NG tube, and they want her possibly walking again. We may have to go to a children's rehab hospital for a few weeks which comes with its own challenges. That was presented to us today and we have to investigate further. The idea of being away from our hospital "home" where they know us so well is frightening, as is the idea of going to transplant as weak as she is. Lots of soul searching today as we are stuck between a rock and a hard place with this decision,
If you pray or send good thoughts, please send Phoebe all the strength she needs to move forward as we look towards transplant- we need all the extra help we can get!
UPDATE 12/20
You all checking in really is so sweet-thank you so much!
We are still on the regular floor. We visited a rehab facility in the hopes that Phoebe could go there to get stronger before transplant, but she is not medically stable enough at this point.
She continues to work hard each day and gain things little by little. It is so hard watching her be so confused all the time, and just being so sad on a regular basis. At this point nothing brings her any joy or happiness-no smiles at all. We have to remember that the neurologists feel that the seizures caused setbacks that are reversible, but it takes (and will continue to take) so long for her to even get back to the baseline she was before the seizures. I had to remind myself that last month at this date she was still intubated. Now she is talking and starting to gain strength in her left arm and hand more.
Being on this floor with much better care the wounds on her bottom have started to heal somewhat. The other good thing is that she is regaining the sensation of when she needs to go to the bathroom. We know when she has to because she is so nervous about going because of pain that her heart rate skyrockets. She has asked to get down when she has to go so she can go to the bathroom, but she is not strong enough yet to sit on the toilet and balance, so she still needs to use a diaper. We look at the sensation coming back as a good sign, but I know she is scared and frustrated with the pain.
I think what continues to be hard is that we have no idea when this will end. We have been here since September 5 with no end in sight. She wants to go home and I want her healthy. I just wish I knew how this story would end and could look forward to something. We can't wait to get home and have a giant redo party for her so we can actually celebrate her birthday and Christmas and just being out of here.
I think you all need it! xoxoxox
My original pea date was November 1999 and my number was 1803
