Good Times

Wow! It sure has been a while since I lasted posted an update. The last few weeks seem to have just flown by. Shortly after my last post we had another breakdown with the staff at the hospital which resulted in a meeting with the patient advocate again. Then a meeting the next day with a conference room full of people. Couple of doctors, couple of department directors, couple of educators, couple of social workers, couple of discharge planners, a patient advocate, myself and Jeff via speakerphone. This meeting managed to bring everyone on board for a plan to complete our education over a 4 day period and to move Kalyn to the rehab floor upon that completion. Then it managed to allow me to vent to this conference room full of people about the frustrations that we experienced during our stay. At the end of the meeting everyone understood our frustrations and was working to prevent any further issues.

Then the next day I came in to find that Kalyn was left in bed until 1130 when her schedule specifies that she is to get up at 8 am. She was also lying flat on her back when I had specifically called to inform the night nurse that she had to lay on her side while sleeping or she would require a larger amount of oxygen. Needless to say, she required 50% oxygen during that time-which is not compatible with rehab floor or discharge. I had an absolute meltdown and let the director of that floor know my concerns. She then handpicked our nurses for the remainder of the weekend. Now, this is where the story gets interesting. That night, Jeff stayed at the hospital to do his overnight observation to show that he could care for Kalyn. The next morning at 8:15 my mother got to the hospital. She went into the room and saw that Jeff and Kalyn were still asleep (on a Saturday). She then stepped out and said "I thought they would be up by now. But I will let them sleep and go downstairs to have some breakfast. I'll be back in a few minutes." Now, while we did not have the same nurse who left Kalyn in bed so late the day before she was in the nurses station when this was said. This nurse then looked at my mother in a curt tone and said "Yeah, let mom yell at DAD this time." I almost hit the roof when my mother told me about this. Thankfully, she waited until after shift change when she had left and I never saw this little girl again. I did, however, call her boss at home and have a talk with her. I hope that this was addressed and does not happen again. (as a side note-Jeff kept her on her side all night and she didn't require any oxygen)

Then the winds of change and progress began to blow through our lives. We went to the rehab floor that Monday, July 12. And life has been wine and roses. Kalyn has flourished in rehab. She is walking hundreds of feet with a walker. She is speaking more clearly with less stuttering than ever. She has passed her repeat swallowing study and is eating solid foods again. She is not using any oxygen. She is even riding an adaptive tricycle. My child has never been able to ride a bike in her entire life. She can both pedal and steer this bike by herself. Guess who is working extra shifts to make the $1600 to buy her one for at home? This mom!!! I am so proud of her and all of her hard work. The staff of the rehab floor has been a gift from God. Kalyn is so happy there. I am back at work and doing well. And the best news of all is that we now have expected dates for the removal of the halo(Aug. 1st) and discharge(Aug. 5th)!!! We are coming home. And life couldn't be sweeter.

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.

Moving on Up

YAY!!!! We are going to the 8th floor today. Just found out this morning and I wanted to make a quick post so that everyone would know. No more PICU for us. Kalyn is doing wonderful. She is talking up a storm-even without the speaking valve. Her oxygen levels are improved and she is no longer on oxygen during the daytime. She still has a slight need for oxygen during the night-which has happened in the past when she has had respiratory illnesses. I am so happy right now that I cannot even form my thoughts into a coherent blog entry. So I will keep this short and sweet and sum it up with a YAY...just as it began-for that is the only word that I hear in my head and my heart at this time...YAY!!!!!!