Day 6: Macy's Journey with the Rex Shunt

Today was our 3rd full day in the ICU.  Every time we are in the ICU, I forget just what life is really like here from before.  Your room is always hopping, you see so many doctors and nurses that your days blend together, your days feel like forever, and you get no sleep.  I have had about 5-6 hours of sleep (maybe 7) since Tuesday night.  Macy is in constant need, so sleep at anytime seems really out of the question.  Even if we wanted to nap, our room has no blinds on the windows, and we can't see out of them either because they have been covered with some sort of white film.  The ICU room we are in was made as a room for patients with extremely contagious illnesses who need to be isolated.  Macy is not that kind of patient, but it was the only room on this floor open when we arrived.  Just to add to the crappiness of the room, it has no shower in the bathroom.  I have to shower in the family lounge bathroom.  If I had it in me to leave the hospital for a few minutes, I would head back to the Ronald McDonald House like Jeremy to shower, but I am not comfortable leaving. 

I am first going to start with the positives today:

1. Macy's body started to come out of the shock state that she was in overnight.  Her heart rate finally started dropping.  She was living very uncomfortably in the 170s and 180s, and is finally in the low 100s.  Her norm is much less, but she is still only 3 days post-op so this is great!
2. She has started on nebulizer treatments with deep suctioning to help.  It is horrible to watch her get the suctioning done.  They go in through her nose suction all of the junk out of her airway.  It gets her really worked up, and her heart rate increases, as well as her blood pressure.  While doing it her oxygen levels drop.  Poor girl!
3. They came by in the afternoon to try her on a high flow nasal cannula.  She lasted for about 30 minutes, and then asked to be put back on the bipap mask.  We might make another run at it for a little while, but I think all of the fluid causes her to wear out quickly with her breathing.
4. Her fevers are officially gone, and her 2 antibiotics that they started her on have been discontinued.
5. They stopped the blood pressure medication that she was on because her numbers are normal.
6. AND THE BEST NEWS OF ALL:  Her morning ultrasound showed a very nice, open, flowing shunt in her liver!  Woohoo! They started back up her blood thinner that they had stopped in hopes of getting the bleed to stop.

Here are some of our challenges:

1.  Macy is still very swollen in her abdomen with a ton of fluid.  It makes it hard to move around, and it makes it harder to breath.  I think the fluid causes her lungs to have a harder time expanding so that she can breathe correctly.  Like I said, to help this they are doing the respiratory therapy.  They have also added Lasix (a medicine to help pull off the fluid).  She is responding well to it and peeing like crazy through her catheter.  
2. .The ultrasound still shows a hematoma in her abdomen.  So something inside was bleeding, but it looks like it has probably stopped actively bleeding because all 4 ultrasounds have shown that it is unchanged.  It might still be oozing some, but if it is it's extremely slow.  Her hemaglobin levels were normal, so they don't think anything is bleeding anymore.
3. She is struggling to cough which is also making it harder for her to clear her lungs and move to a nasal cannula.  We believe that is why she felt so uncomfortable on it.  The bibpap forces air in and out.  The cannula just forces air in, and she has to breathe out, but if her airway is full of secretions that she cannot cough, she can't breathe out very well, and it causes her to feel that she is struggling.  So they decided to add a cough assist therapy to her treatment to help assist in coughing to move all of those secretions.
4. She hasn't eaten any food since Tuesday.  Obviously it is clear that eating in her current state is not doable, but we need to make sure she is starting to get something in her body.  Typically if the patient is not starting small amounts of food or drink on their own in 3 days, they start them on something.  Today the doctors said they want to see how she continues to do overnight and tomorrow morning, and then make a decision.  If she doesn't look like she is heading toward the nasal cannula soon, then they will probably start giving her small amounts of a liquid formula into her NG tube (that goes through her nose down to her belly). This tube is currently sucking out stomach fluid.  
5. Macy has been having some ICU psychosis.  Last night when she would wake up she was clearly in a very confused state.  She would stare at things for a very long time, and then thought she was seeing things that weren't there.  She thought she saw our dog Yuri at one time, our cat Harley another time, and even saw something on the turned off TV screen that she said was very scary.  This can be very normal for patients who are on strong pain meds, as well as patients who have been in the ICU for an extended period of time.  We started our morning with a plan following those episodes last night.  We turned all lights on at 7 a.m., and started to have a very clear "day" time.  She took a "bath", we brushed her teeth, and she got her bed and gown changed.  We turned off the lights once today in hopes of a nap.  She napped shortly, but then was back up.  So it was all lights on for the remainder of the afternoon.  We turned the TV to Teen Nick and Animal Planet (her two favorite channels), and let her watch some afternoon TV.  Nighttime routine includes brushing teeth again and lights out by 9 or 10.  We hope this schedule will help her with the psychosis some, and give her a more normal feel.  

So overall, she is placing lots of checkmarks in those boxes.  We still have a lot of things that need to come together.  Each day is a new day, and each day has so many options for positive changes.  She's got this!  Keep those prayers coming!  Pray that Macy can start to clear her airway on her own without so many therapies.  Please pray that Macy can start tolerating the nasal cannula for a longer period of time.  Please pray that the Lasix continues to pull the fluid off of her, and her abdominal swelling can start to decrease.  Please pray that the hematoma in her abdomen starts to absorb back into her body, and that there is no active bleeding.  Please pray that our new "schedule" helps combat the psychosis that Macy is facing.  We are thankful for each and everyone one of you following our blog, praying for us, sharing Macy's prayer needs with others, and continuing to have our family, especially Macy, in your thoughts so often.  We are very blessed to have so many caring people in our lives.