Many, many changes since my last post. It is difficult to keep this up to date with no internet access at the hospital. The day after my last post, Kalyn continued to have respiratory issues. An xray showed that her left lung was a complete white-out from collapsed small airways. It was suspected that there was a large mucus plug blocking the larger airway from feeding the smaller airways. The ICU MD tried multiple methods to open up her lung to no avail. On Friday they decided that a "therapeutic intubation" was indicated. This was very heartbreaking for me as my biggest fear was that she would end up on a ventilator. I knew that this would mean that she was sick. Little did I know that my worst fear would end up being her salvation.
ENT doctors came in and intubated her with a fiber optic scope through her nose and she immediately improved. She did not have that hunger for air in her facial expressions that had become constant. I was thankful that this was successful. On Saturday morning her blood counts had dropped and she required a blood transfusion. We were told that this was no big deal but it was not adequately explained to us and we were understandably frightened. This is when we reached the height of frustration with the lack of communication in the ICU.
While we have had wonderful caregivers while in the PICU, communication has been an issue. We are constantly at the bedside and are very involved in Kalyn's care and I think that this is not the norm for this unit. I think that they know how to take care of patients well but not how to include the parents quite as well. I am thankful to Karen who has been a saving grace for us. Her patience and understanding and willingness to take the time to explain and prepare us has allowed me to maintain my sanity. The transfusion went well and we are now all calm again.
We went home last night to take care of a few things and get a good night's sleep. When we came back we were surprised to find that Kalyn is signing to communicate. She uses some simple signs for yes and no which has made it much easier to accept the breathing tube. My sister Brittney said that she taught her some basic signs-I'm not sure that she has them right but it's working. This afternoon while we met with a patient advocate to discuss some of our concerns, Karen taught Kalyn to suction her own mouth. This is adorable. Kalyn hates having her mouth suctioned after her tube is suctioned but is now doing much better with it because she can participate actively--YAY Karen!!!
Slight fever this afternoon but sputum and urine cultures are all good so we are okay with this very low grade fever. Things are looking a little better. I say this with baited breath as every time I report good news we are dealt anther heart-wrenching blow. But for now the plan is to extubate her in the morning and go from there.
Keep us in your thoughts and prayers and know that we appreciate all of this. If I have not responded to a call or text I apologize. This is a very busy time (I fear my cell phone bill this month). Know that I have gotten every message and text and facebook post and truly been touched by them all.
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