Hello hello hello!!!! No matter what we are facing or going through I always hope everyone that is on this journey with us and their families are doing well also…..
Since it has been a while since I updated this blog I think it will be easier to give bullet points instead of long paraghraphs until I am able to post more regularly.
Since last week these things have happened(minus a whole lot that I can’t post because I can’t tell it all in 1 post) lol
-PT/OT has been working with her daily, They have her doing many exercises to strengthen her core and wake up those muscles that she hasn’t used in a while.
-Getting from bed and taking a few steps to the chair. Sitting up in chair for a few hours. Also does arm and leg exercises while she is in the chair.
-has a wrap on left arm to help with swelling in that arm
-one of her nurses had a spa day with her and painted her nails blue
-had spacer wires removed
-tried to drink and eat and started gagging. coughing and choking so the speech therapist stopped by to do an assessment. Kendall also went for swallow test. They found out that liquids make her cough and feel like she is going to throw up so for now any liquids she has need to be thickened and she has to eat small bites of soft foods until those muscles in her neck are functioning correctly.
-during the day she typically wears a high flow nasal cannula and a CPAP mask at night. Sometimes when she is working hard to breathe she has other devices to use and/or she has to put on mask during the day until breathing, heart rate etc….are back to normal
-lung specialist ordered 2 new inhalers to help her with her breathing
-she is doing well over all. Getting back to sitting/standing/walking, eating and feeling stronger is going to take some time but she is making improvements everyday.(she is getting tube feedings until she is able to fully eat on her own.
-she has 2 chest tubes in that have been draining less and less and they should come out today. If they are able to remove the chest tubes and the CPAP she will be able to go back to 11W which is the cardiac floor she started on.
-Ultraound of heart shows that the right side of it is “stiff” and is working fine but not yet pumping with ease like it should be. Surgeon said this is very common because the new heart has to learn how to pump in a new body with only 1 long. They have medications that they use and continue to tweak to improve the function.
-heart cath pretty much showed the same things. There are no signs of rejection. Her new heart is very healthy. The right side is going to take some time to be fully functional because her body was used to having only one chamber on the right side and now it has 2 so it has to reset itself to the change to keep up with the extra blood flow.
-Kendall has never been a child that complained about anything including pain. She always goes with the flow
and minimizes her feelings and/or pain so we literally have to tell the nurses when she needs pain medication by reading her body language, and eyes . Even after all she has been through she never complains.. The doctors, nurses snd therapists have even said it. They are amazed about how resilient she is.
II’m sure that there is a lot that I missed but I am very sleepy and going to bed. Sorry if there are a bunch of typos.
-continue to pray for her recovery and therapy so that we can help her be the strongest she has ever been
Love you all and continue to support #TeamKendall