Life in the PICU

Well, the one thing that finally stopped my crying last night was being able to sort out my feelings on this blog. Thank you all for your comments and for the encouraging verses that you send. Sometimes the verses and songs that you write are ones that have already popped into our minds - I'd like to think because you are thinking and praying them already for us - and other times they are ones that we haven't thought of yet, and they speak so directly to our hearts. Your words of love and support go directly into our hearts in a way that soothes the wounds that are still so raw.

The word that we have right now on Ellie is that the doctor does not want to plan on extubating her until Monday. (We really trust and appreciate Dr. Howell, the attending physician.) This time will be used to try to figure out why Ellie is unable to breathe properly without the ventilator. I feel both relieved and panicked all at the same time. I dread watching Ellie exhaust herself by breathing so rapidly and having to wear the mask, but I also hate to see her lying there with a tube in her throat, unable to communicate.

The update from Loretta today is this:
“Her general state since the re-intubation on Wednesday night has been one best described as 'restless'. She was incredibly restless, fidgety, constantly attempting to 'assist' the doctors by removing the tubes in her mouth and nose. She pulls at the tape on her face and motions toward the tubes and lines below her waist. They have struggled to sedate her from Thursday in the early morning hours to this morning, Friday. It appears they are making some headway with the drug 'mix'. Ellie seems able to shrug her shoulders, turn herself over, pick up arms and legs despite an incredible attempt to sedate. This morning, a half hour into the use of a paralytic she turned her head from side to side and shrugged her shoulders. It is just totally amazing to see. They tried to re-seat her nasoduodenal (n.d.) tube – there have been multiple tries at this. (The n.d. tube will be used to feed her – she is currently on IV nutrition but it is much better for her own digestive system to do the work.) She is fighting the respirator less and seems to be breathing well, which seems to imply there is nothing wrong with her lungs. Her blood pressure is stabilizing, her respirations seem regular and her heart rate and oxygen saturation are good.

We were fearful last night that Ellie was going to go back into hallucinations again but thank God this did not happen. She seems to become incredibly active at night and she is amazingly lucid. She continues to struggle to communicate and in the night we developed a code for her to communicate when she wanted her mouth suctioned. She remembered it and has used it several times now.”

From Sarah again:
I will need to start making visits so that she knows I'm still here. We were hoping that she would be under sedation enough to not miss me... but it is not to be. I have had two long full nights of sleep and some good rest during the day, so I do feel much better. And knowing that your love and prayers continually go before me, makes me know that I am upheld by the Everlasting Arms.

John and Belinda stayed with Ellie through the night. John was able to sleep some at the hospital and now Belinda is home getting some sleep. I will head over there at some point. Thank you for holding John, Belinda and Loretta up in prayer as well.

John has still been so strong. He is in "fight mode" these days - he has not broken down this whole time. I know that his time is coming - because he is human, after all, and this will be his longest stint in the ICU - but for now God has given him extraordinary grace and strength. On this spontaneous trip to NY, John and his dad were able to sit down and make a plan for John's business (he has a lawn/landscape business in Florida). They decided to scale back his accounts to something that Stan can manage in John's absence so that he can stay in New York with Ellie and me. I feel profoundly relieved. I need him here so badly, now more than ever before. And even in this God is providing a way...

Belinda is wonderful to have on board. After months of being able to do nothing but watch from the sidelines, she is raring to go. Her experience as an EMT and her physical strength have been invaluable in knowing how to move Ellie around as well as maniuplating things like tubes and masks (both very difficult things for me). The fact that she is already known and loved by Ellie allows B to help in the calming and talking aspects of her care.

Loretta is ALWAYS ON. I don't know when or how she sleeps, or how she keeps going other than that your prayers must be sustaining her. For this entire past 7 months, Loretta has been the one constant factor in Ellie's care. She keeps all the records, and is the communcation and research hub, but more than that, she provides continuity between care-givers. Because she is on with whoever is actually in the room, and because she always knows my thoughts and wishes in any given situation, she has become the constant thread that is woven throughout the process. By keeping and processing all of the information, and by knowing both John and me the way that she does, not to mention the vast wealth of medical and psychological knowledge that she has, Loretta has been able to see the whole picture in a way that we are often unable to do. Her input and observations are invaluable! I would ask that you keep her in constant prayer in the same way that you do for me. If she breaks down, then my world will unravel... not to mention Ellie's.

We will continue to get word out as things unfold. There are no words that can adequately thank you all for your tender love and faithful prayers for our whole family and "team".