Rollercoaster Ride

Up and down and up and down again. Will this ride ever level out? Today Kalyn was placed back on a clear liquid diet so that they could prevent her from getting food into her lungs-which it appears may have been an issue by the scrambled eggs that she coughed out of her trach this morning. And she is continuing to require a large amount of oxygen at night when she is sleeping. So large that she would not be able to come home with that need. But she does not require oxygen while she is awake at all.

And the issues with communication continue. We were told that we would start doing daily trach changes for educational purposes on Thursday. Then we were told that the trach changes were weekly and that the ENT MD has to do the first two. Then we were told that our ENTIRE educational record was BLANK-as in no person in the PICU bothered to chart any of the items that we had taken the initiative to learn. So we got to start all over at the beginning. Thanks a lot! Then we learned that we could begin doing the daily trach changes-so we observed on Saturday and then did it ourselves on Sunday. Then apparently per the respiratory therapist this was too frequently and should only be done twice per week. However, the pulmonary MD informed us that we were allowed to do our second change today. If you are having a hard time following all of the different stories here then---welcome to my world. I have seen that there is a great deal of breakdown in the lines of communication at this hospital. The right hand clearly has no idea of what the left hand is doing. Not only that we have had some very poor nursing care. But at the same time we have had some great nurses. It has been a real hit or miss journey.

This whole up and down with the quality of care has made it very difficult for us to keep everything in order at home. It is hard to go home and try to take care of everything that needs to be taken care of at home when you aren't confident in the care that is being provided.

I hope that things will turn around soon. I think that the rehabilitation floor will be good. Even though it is difficult to accept that she needs to stay for rehab when I want to take her home so bad. I want her hear with me so much that it hurts. I go up the stairs and the first thing that I see is her bedroom. And it is so empty. It is a constant reminder that things are not whole here. I want my family to be complete again. And I want to move on. I feel like I have been patient but my patience is beginning to run thin. I want to go up the stairs at night and turn off TWO TVs and kiss TWO sleeping angels on their foreheads while they sleep. My heart is only half full in this house. Everything is empty and I am eager to fill it back up again.