PICU - day 17...Thursday

What a day!
Emylie slept mostly through the night. At 3:45 am I heard her cough/gag and then her alarms started. I quickly got up. Her eyes were open and when I asked her if she was ok, she shrugged her shoulders. Her sats were in the 70's so I suctioned. After one time of suctioning her oxygen saturations (sats) started to increase. Just about that time the nurse came into the room. I suctioned her a 2nd time and she was better. The nurse left back to wherever. It took Emylie about 15 minutes to fall back to sleep. I was grateful she went back to sleep so quickly because I cannot go back to sleep until she is, especially with the nurse out of the room. Emylie slept until a little after 9 am. I had to leave at 7 for shift change and for the first time in a few days actually ate breakfast. If you are ever at Primarys on a Tuesday or Thursday morning they serve delicious blueberry pancakes with yummy buttermilk syrup.
The doctors rounded at about 9:30 am. They mentioned that Emylie's breaths per minute setting on her vent was changed from 20 to 15 yesterday at 4pm and she did well with it. (I didn't even know they did that....not sure where I was...) They decided to stop the morphine and cut back on the adavan going from every 6 hours to every 8. There was questions about going home and what physical therapy she would need, medications, etc.
The wound care nurse came in and looked at Emylie's pressure sore on her right hand. I took a picture of it so I will have a baseline picture of it when we get home. The nurse gave me instructions on what to do. Later in the afternoon I was told a plastic surgeon was coming to take a look at it because the wound care nurse didn't feel like it was getting better. The surgeon stopped by, took some pictures and sent them to his boss. Made a phone call and they want to see her in clinic in 1-2 weeks.
Physical therapy also came by in the morning and brought a wheel chair for Emylie to use while she is here. She is unable to leave her room because of the virus she has so the chair was mostly for her to practice sitting again. The therapist made a few suggestions of what to do at home....everything we were working on before and then having her sit in a wheelchair three times a day. Emylie loved sitting in the wheelchair and she looked good in it too. Sarah, her school nurse stopped by a few minutes after Emylie got in the chair. She was so excited to see Sarah. Sarah played with Emylie...colored, played with stickers, candyland, etc. I stepped out to get some lunch at the PICU parent hour and met a nice couple whose 7 month old daughter had heart surgery yesterday. After getting back from lunch the time flew by. I spoke with the quality care manager about some of our concerns with the level of nursing care Emylie has been (or hasn't been) receiving. They were very kind about it and said some of the things we brought up were problems they were aware of. I got done with that and noticed Emylie's heart rate was higher than normal. I took her temp and it was 37.7 and 38.0C. The nurse said it was likely it was because she was "exercising" in her wheelchair. Chris Hartling came and discussed some additional things with me. She so perfectly described why Emylie's lungs sound the way they do and that it doesn't necessarily mean she needs suction. When Emylie breaths you can hear and feel each breath. The airways are inflamed and therefore smaller. Because they are smaller the air passing through will sound different and her breath sounds coarse. Before she got sick if you could feel and hear it we would suction her...but this is not always the case now. So it was nice to hear Chris's explanation.
As I was getting her back in the bed after being in the chair I noticed her scare from her myelomeingocele closure was a darker red than normal and she had little spots on her back. I asked the Nurse Practitioner...she said the red spot looked like the beginning of a pressure sore and she would have wound care come and take a look at it. ARE YOU KIDDING ME??????? I wasn't sure what to think and had a flood of emotions hit me. That was the last thing she needed was a pressure sore on her back. SERIOUSLY!!!! Sarah was still hanging out so she got to hear my vent and cry moment. When the wound care nurse came back she had a dumb explanation for what she saw. After she left and Sarah, Dave and I were discussing it, it was decided that the wound care nurse did not know what she was talking about....the Nurse Practitioner confirmed. The NP did believe we caught it before getting worse but that she did have the beginnings of a pressure sore.
Throughout the day Emylie has progressively had more and more loose poopy diapers. She also tried to connect the blood pressure cuff house and was very jittery and couldn't get them together as a result. Dave talked with the NP who said she believed it was withdraws to the morphine...her last dose was a 8am and it was about 10p when she figured it out. So they gave Emy a 1mg dose of Morphine to help with the withdraws. I think the plan is to have her weaned from all before coming home.
Emylie fell asleep during trach cares around 6pm and then woke up about 8:30. It is now 7 minutes after midnight and she is going strong. I so want to sleep but cannot seem to let myself until she is asleep. I hope she decides to allow herself to rest very soon.
She was happy today. I think I am forgetting some details.... We are planning to leave tomorrow....it will be a road of recovery at home still....she will likely be back on the vent 24/7 for sometime and I keep falling asleep typing. I am going to go now and see if I can't convince her to close her eyes......