So quite a bit has happened since my last post, Kambry has had some up moments but definitely some down moments as well. On Sunday when we got back Kambry was on the oscillator, and then by Monday morning she was back on the traditional vent. So that was a positive! Monday was a pretty uneventful day, Kambry just got to rest and recover from the weekends events. On Tuesday she had a couple of crisis. The Drs know that her Pulmonary Hypertension is a factor, but can't pinpoint what causes the crisis. Tuesday night Kambry had a great night, so this morning a couple of the Drs. thought she was stable enough to try something different. They didn't think just coasting along at the current setttings on her vent were going to be as beneficial to her as trying another method of care. When they adjusted her vent sentings she got extremely upset. After getting upset they decided it was time to go back to the oscillator, not so much as a step back, but more so to let her lungs rest. The Drs would like to keep her sedated enough where she isn't in pain or working against the vent, but not so sedated she can't move. If she is super sedated they can't get her to move around and get rid of some of the edema. They also tried another medicine that is supposed to help with her pulmonary hypertension. They expect her to stay on the oscillator for a couple days, but the plan changes daily, even hourly sometimes so we will wait and see. It's hard because every CDHer is different and Kambry is the boss. She tells them how fast she wants to go and what she likes and dislikes. Right now she is in a good spot - she is comfortable and her numbers are remaining stable. It's difficult to look at how swollen and tight her body is and not wanna do everything imaginable to get rid of the excess fluid. The Drs and nurses just keep reminding us that it will come off, it's just going to take time. She is definitely teaching us to be patient.
We are hanging in there out here in Denver, but we don't think we could do it without the support of our loved ones. We just can't express our gratitude for the calls, texts, and emails we have recieved. I haven't been the best at responding to all of them, but I am so grateful. Through this whole situation it really has made us realize how nice and genuine North Dakota people really are. And not just North Dakotans - we've even had complete strangers reach out to us. We love seeing everyone in their Kambry Can T-shirts. If you have a shirt, please post a pic of yourself/your family to Facebook. If you don't have Facebook, feel free to text me a picture (612-247-4535). We've started printing the pictures and have them on a door in Kambry's room. The nurses and Drs love seeing all the pictures with support for little Kambry. At times when we are down and out we look to her wall and remember all the people praying for this little fighter!
"Rejoice in hope, be patient in tribulation, be constant in prayer." [Romans 12:12]
Lon
We are hanging in there out here in Denver, but we don't think we could do it without the support of our loved ones. We just can't express our gratitude for the calls, texts, and emails we have recieved. I haven't been the best at responding to all of them, but I am so grateful. Through this whole situation it really has made us realize how nice and genuine North Dakota people really are. And not just North Dakotans - we've even had complete strangers reach out to us. We love seeing everyone in their Kambry Can T-shirts. If you have a shirt, please post a pic of yourself/your family to Facebook. If you don't have Facebook, feel free to text me a picture (612-247-4535). We've started printing the pictures and have them on a door in Kambry's room. The nurses and Drs love seeing all the pictures with support for little Kambry. At times when we are down and out we look to her wall and remember all the people praying for this little fighter!
"Rejoice in hope, be patient in tribulation, be constant in prayer." [Romans 12:12]
Lon