Broken Record

Hi my name is Brittany and I'm a broken record.  I feel like that should be my blanket statement and just to put it out there for anyone new reading our blog.  Yes, we were admitted into the CICU from Thursday night until Sunday early afternoon.  Yes, this was another fever that brought us in.  Yes, she was admitted due to her being polysplenic (but afunctioning asplenic).   Finding out your daughter has an extremely rare condition was so hard on us emotionally, but we've managed through this (so far).  We were petrified of her heart and her bowl obstruction, all of which are repaired, except for her different anomalies to her heart.   I honestly thought her heart and GI would be the issue, but I now think otherwise.  My daughter's immune system is not working, or at least not appearing that way. 

I stayed with Zoe Thursday night until Friday morning.  I specifically told the fellow on CICU to not have her woken up and to let her sleep.  No one bothered Zoe.  Mike and I did the switch-a-roo, so he could be with her and I could get some sleep.  My inlaws watched Zander for the day.  Again, we only communicated via text.   She was not eating in the hospital.  This girl does not reject food (only when you give her canned peaches).  She also wasn't drinking her formula.  She still was not hooked up to fluids and I wanted to keep it that way.  I ended up heading back to the hospital to bring our Dr. Brown bottle to see if she would take that.  That was the magic trick.  She wanted her own bottle.  Phew.  Her fever broke Friday and was back to her peppy self, or "Smiley" as the CICU likes to call her.  You know you've been to the CICU too many times when the entire staff, doctors, people who bring you food get excited that Zoe has been admitted.   Mike stayed with her until Saturday morning.  We switched on Saturday, thinking she was going to be discharged.  Nope, protocol was 48 hours from the time the antibiotic was administered (midnight Thursday), so that puts us at midnight (Saturday) and they wouldn't discharge us then.  So Zoe and I made the best of it.  One of our favorite NICU nurses came down to play with her, her cardiologist came by to visit, we played blocks, went for wagon rides, and tried to get her to sleep.   Night nurse time.   PURE HELL.

She explained she was new as a CICU nurse.  We got along great and Zoe loved her.  We gave Zoe her penicillin at 8pm thinking she was going to go down.  We're going to call the nurse "Ninja Nurse" because Friday night she was able to get her vitals on Zoe with no problem, no awakenings (keep in mind Zoe didn't sleep the night before due to the ER).  Zoe finally laid down at 10pm and I transitioned her to the crib.   Turned the thermostat up so it was warmer, laid on the bed and shut my eyes.  Next thing I know Zoe is screaming.  I didn't have my glasses on so I couldn't see the clock.  I asked "Ninja", did Zoe get up on her own?  "What time is it" "Yes, perfect timing too because I have to get her vitals, its midnight, I'll be right back and get her bottle".  Zoe has been only sleeping for 2 hours now.  I go and grab Zoe and see the pen-light flashlight on the crib.  Ninja lied.  I know she checked her pupils.  When Ninja came back in, I asked, why are you doing vitals on her, she needs to sleep, or we'll be back here in 3 days because the lack of sleep, makes my kid sick.  "Its my job, I'm so sorry, she'll go back down, your husband had no problem getting her back to sleep yesterday" (eyes bulging out of my head and temples flaring).  Ninja leaves. How dare she.   2:05, 2:15, 2:20 Zoe is roaring to go.  I go to the bathroom knowing Zoe will scream, pull her leads off and Ninja will run in.  Worked like a charm.  She entered the room, and I said "just so you know she's been up since midnight, you are not doing vitals on her in 90 minutes, or I'm discharging her".  My conversation to her got a lot more heated as I was so tired.   Long story short, Zoe didn't go down until 7:30 a.m.  Yes, 7:30 a.m.  The girl only slept 2 hours on Saturday.   Absolutely ridiculous.  So she was able to get her 4:00 a.m. vitals.  Next visit, sign on the door and discussing MY rules to the charge nurse.

It was protocol to have Zoe stay in the CICU for 48 hours.  She's cutting teeth, so she will get fevers, and yes we'll have to bring her in "just in case".  We may have more visits this winter (Gosh, I hope not) I discussed this at length with 20 + cardiologists, her cardiologist, hematology, pediatric surgery and her pediatrician.   They do not want to play the what if game. Nor do we.  Just been not an easy year with hospital stays.   Her birthday party is February 2nd.  I'm so fearful we'll be back in the CICU after that.  But she deserves a party, this is a huge milestone for any kid. 

We have more follow up appointments with everyone in the next few weeks.  This Friday, Zoe is the heart ambassador for one of the elementary schools.  I will be giving a brief speech on Heterotaxy and CHD.  We're deeply humbled by this honor.