Day 35 post post rounds - things are going well but please keep your fingers crossed.

The floor is really busy again today. Rounds concluded for us around 2 pm.

The tentative plan for extubation attempt two is Wednesday. Emerson is at her admit weight which is not only great to see but much easier for herto breathe. Her xray looks very clear, I think it is okay to even call it normal. The are running volume support trials every four hours today, every eight hours tomorrow and working up to 20 or so before extubation. Volume support trials are where she triggers her own breath, establishes her own rate, and takes in her own volume. If breathes less than the set volume the ventilator will assist. In essence this is the workout plan for lungs.

She is really much more visible fiestier than before. As her sedation has been weened, she has started to paw her hands in the air and shake her head side to side. This new behavior was frightening because she is at an increased risk of seizure activity as she weened from the phenoBlahBlahBlah, Now it is only startling.

She is tolerting the formula really well. They continue to increase her continuous feeds through her NG tube and by ten tomorrow morning she should hit her target amount. This is great progress and shows that her digestive system has significantly recovered. They will consider switching her to bolise feeds rather than continuous if everything goes well. For the medical followers, her residuals have been really good. For a two hour period at 55 cc per hour, the latest residual was 42! Her ostomy output has been productive and we have stopped her lasiks for now.

Oh yeah she snores. Her air way has cleared up enough so that she has a "leak" without steroids. I think this has allowed her snore. It was a bit scary at first because it is a wet sounding noise, we thought she was chocking and required suctioning. Suctioning and CPT are no longer productive as her secretions have drastically diminished and her atalectasis (collapsed area of lung) has gone away.

Another milestone is that she officially does not have any pressers/pumps other than her feeds on a stand. At one point, she had three stands with around 20 pumps and bags hanging. This is huge. Her meds are all pushed through syringes into her PICC line in her arm. They stopped trying to get a peripheral IV in her - thank goodness, it was time (Lindy your rock).

Jessica is doing well, we both are. We are both holding our breath a bit and we are fearful and anxious about this next extubation attempt. The game plan is strong and Emerson is making good progress. The doctors here really have been amazing, we don't say that enough to you readers. In awful event that your child is sick Loyola's PICU is really wonderful place to be. The level of personal sacrifice on the part of the doctors and staff here is really evident, these people care a ton. Many of them feel like family.

Thank you everyone for all of the support and offers of help, it has been overwhelming. Five weeks into this process and you people are tenacious with your help - thank you, it is about all I can say words really fall short here. I'll try to post after rounds tomorrow, likely in the afternoon. Sunday tends to be a slower day at the hospital so I should be able write more as we learn more.

Maybe I'll get Jessica to flex some of her "mad" writing skills for you. :)

Some of you have heard, my brother almost cut his thumb off in a table saw. He had surgery and is doing well but has limited movement for a long while. Katy is now taking care of two boys for a bit, please check in with him if possible.