Fontan Day 5: PCICU Friday

Noon: A case is “rolling” so I”m updating. MC is sleeping now, and I just watched a family pray and thank God for Dr. Bradley’s healing hands on their own child, a 12-month-old baby boy with an AV Septal defect. Amazing.

Last night, I went back to our room about 11 p.m. and slept. I just knew that I would wake up and go back sooner than I did, but I didn’t move until my phone alarm went off at 6 a.m. I showered and headed back to PCICU to relieve Mel around 7 a.m. He stayed with her all night. We both just didn’t want her to wake up and not understand where she was or not know where we were. Thankfully, she has not really been aware of what’s going on much. She is in and out and very groggy. She was in so much pain last night, but would not take her meds. She did not want anything to do with taking them orally, so the only relief she has been receiving is through her Morphine IV, occasionally. The problem with that, is she is itching terribly. She has been given Benadryl for the itch, but I’m just praying that she will soon trust us enough to take her Oxycodone and Tylenol! (Oral pain medicine.) They are pulling her central chest drain tube, and IV to her heart now and will remove a few lines. She is draining a ton through her three tubes now. We may be able to go to the PC Step Down unit, 8D today, which is earlier than I expected. She will keep the line in her neck and arm and her two chest drain tubes. She is in a private “area” glass room in PCICU now, but we can’t actually stay with her. Once we move up to 8D, we will both be able to stay with her.

I’m very concerned with her seizure activity. Yesterday, she was having occasional, quick loud breaths./shout outs. I’ve noticed she’s had them for a while, even before surgery, but they were very few and far between. Maybe a few times a week. Usually at bedtime, just before she fell asleep. She had about 10-15 yesterday with an occasional “stare” episode. Last night, I read Pinkalicious to her and she had what I know was a seizure. She had the most bizarre facial expressions, ones that I have learned only happen with one of her seizures. She was unresponsive for a minute or so, then returned her interest to her book. Today, they are more pronounced and are happening pretty often. The “shout outs/yells” are longer and her blank stares are longer. Thankfully, Dr. Turner has ordered an EEG to read her little brain waves and get to the bottom of it all. I’m pretty sure that there isn’t much that can be done, I’ll just be glad to get him, the expert, involved.

It has been a difficult day for me. As a mom, I want her to respond to me and I want to be able to comfort her. Right now, for the brief moments she is awake, she is very angry. It almost makes me happy to see her feisty little spirit, even diluted and momentary, but my heart breaks because I can’t fix everything. She woke up for a moment earlier and looked up at her beautiful young nurse with a long blonde ponytail and smiled. When the nurse talked to her in her sweet voice, Mary Clare asked her if she was Cinderella. I’m hoping and praying to God that she is dreaming of beautiful princesses and magical fairy tales and will remember this as a quick visit to see her Cinderella nurse.

4:15 Another “case rolling”…Great news to report!  Dr. Turner came down with a team from Neurology.  He is amazing!  After talking to us about her seizureish activity, they ordered a 24 hour EEG.  If she shows enough patterns/activity to determine exactly what’s going on, it may not have to be that long.  Unfortunately, we have to remain in PCICU until the EEG is complete.  (Which means moving to the step down unit, 8D, is postponed a bit.)  I’m completely fine with that, as long as we are getting down to the bottom of these seizures.  Dr. Turner seems to think they may be myoclonic seizures.  We’ll see.

Around 12:30, they gave her IV morphine and Versed  to to keep her quiet while Dr. Bradley removed her central tube and IV.  She also had one IV removed in her little hand.  That leaves one on the opposite side of that same hand, one in her neck, two drain tubes and pacing wires, telemetry leads, pulse ox and oxygen.  We’re getting there!  She is in much better spirits this afternoon and even watched Happy Feet.  Her chest pain seems to have lessened.  She has even rolled on her side a few times to change positions and get comfy.  Right now they are placing her EEG lines in her hair and we were told they were more “permanent” this time.  (Last time sticky gel was used to keep them in place for an hour or so.)  I’m hoping Ariel will have hair left after this.  Actually, it may work out well.  We’ll just have to buy a red wig.

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