So, this week...

Here is some insight to our week and a little update on Keller: 

Early Monday morning Keller spiked a temperature.  He had been crying inconsolably through the night and when I checked his temperature it was 101 something... with no cold-like symptoms. Keller had started a new medication on Saturday and therefore was due to have lab work drawn so when the offices had opened, I called and made an appointment for him.  They did lab work, blood cultures, urinalysis and culture and a chest x-ray.  He switched back and forth between screaming or lying limp in our arms.  They gave him a shot of antibiotics. His pediatrician said that Keller was dehydrated and that he felt we should go to Vidant or Duke by way of CarolinaEast Emergency department and sent us there with the plan to go by ambulance.  Once at the Emergency Dept. they assessed him and spoke with his cardiologist who felt that the new medication was the cause of dehydration and that he could be rehydrated on an outpatient basis and then checked again at the peds office the next day.  Monday evening his fever broke and our sweet smiley Keller returned and we hoped we were past it. Around 1 am Tuesday morning the fever returned.  He had tylenol in his system and it was still 101-something, and he was inconsolable through the night.  I started throwing things in a bag and called the on-call cardiologist at 4am. She suggested tepid baths. So Keller got a bath and another at 7.  We went back to the pediatrician and he repeated some labs and took another chest x-ray as well as a belly x-ray. So far nothing was proving to be the cause of the fever.  He fought them a little harder on Tuesday so we thought he was feeling a little better.  (Monday he didn't even cry or flinch when they stuck his heel for labs). His pediatrican said if anything changed to let him know. Around 7pm Keller vomited and then again at 7:30.  I called the cardiologists again and told him about Keller's lethargy, crying, screaming and fever and he told us to go the ED at Vidant.  

Phillip and I loaded into the car to head to Greenville. Our ED trip was frustrating and confusing, and very abnormal compared to what we've experienced here thus far. 

When we first arrived, both a resident and attending doctor assessed him and felt that a CT scan and possible lumbar puncture was merited to find the fever's cause; they left the room, and a while later, we found out that another attending (who didn't look at Keller at all) felt that approach was unnecessary and he needed to be discharged. Phillip and I expressed our concerns to the resident who had to be the mediator. We were frustrated that no one could show us why he had a fever for 48 hours or why he was inconsolable. We explained that though everyone knew he was dehydrated, it had not been addressed. They did give him some fluids and then we went home. We were there from 9:30pm to 5:15am. We climbed into bed when we got home and mom watched Keller and Norah so we could sleep a couple of hours.

I called for an appointment to see a pediatrician again, at the request of the ED.  At 11am we were back at the New Bern peds office - this time with a different pediatric doctor than normal, but one who knows his case. His continued fever had risen to 103.4 with Tylenol at this point. The doctor's opinion after assessment was that Keller should have been admitted while we were at the ED; he called the hospitalists at Vidant and they agreed to admit him; we were told to drive back to Vidant, straight to admissions.

He still had the fever when we were admitted. They told us that he was near to having a kidney injury due to his body being overwhelmed by his cardiac medications. 

They did not give any cardiac medications Wednesday evening while waiting for him to rehydrate from his feedings a little, but with the plan of restarting them on Thursday should his labwork improve.  His last fever was at 8 pm and he slept soundly through the night.  We were beginning to feel like when you take your car to the mechanic because it's making a funny sound and once you get there it acts fine, but during rounds this morning he showed the medical team what he has been doing; crying, writhing in pain, and vomiting. It's no fun to watch but we're grateful they got to see what we've been seeing.

Here is what we know now:

- His dehydration was caused by the new medication

- Fever and dehydration are likely not related-fever can cause dehydration but not the other way around

- Blood cultures are negative

- Urine cultures are negative.

- Respiratory panel is negative. 

- Chest X-Ray looks acceptable for a baby in heart failure

- Belly x-ray showed he is full of poop

- Lower GI series confirms the poop but was otherwise unremarkable

What we don't know:

- The cause of the fever

- The cause of his discomfort

It is almost 24 hours since he last had a fever and even showed us a little bit of his smiley self this afternoon.  This whole week Phillip and I haven't been looking for him to be hospitalized, we know doctor's offices and hospitals have the most germs, but we know that what we have seen and experienced is not "normal" for our son.

It does make us feel better to have his cardiologists close by and able to regulate his medications and fluid balance, which were way out of whack. One of his cardiologists told us today that so far we have ruled out the "scary things."  He has now had 4 doses of antibiotics - enough that if it were bacterial it could have been knocked out. They feel whatever the cause is is viral in nature but have not been able to identify it. His primary cardiologist is going to speak with Duke soon and let him know about Keller's week and see if this changes the planned course of action. 

This week has been very frustrating, heart wrenching and gut turning.  Any time there is a fever, he gags, vomits, or even cries, my stomach instantly turns.  Luckily Keller has an outstanding group of doctors and nurses.  His pediatricians (in New Bern) took him seriously at every turn; they have been advocates for him and have even called to check on him during their days off. We are so blessed that our rough ED experience has not been the norm in his care.  That trip felt like they were convinced we were making something up and that his dehydration was not a concern at all.  I was told by another heterotaxy mom that you have to be your child's advocate; that's the case with any parent but so true with a special baby.  We have had to stop people from putting oxygen on him twice (this would aggravate his heart condition). We have had to tell medical professionals that something they said or that their plan is not acceptable in Keller's case. I am not typically a vocally opinionated person but Keller's condition has stretched me to do just that. 

This week we have felt helpless and worried. We have cried. We have been sick, too. We have lost days of sleep due to worry and fear for our son as well as trying to console him all through the night. This has been a week we would not want to experience ever again! We thank you for interceding for us when we don't have words. We have been told about our church praying over our sweet boy at the altar at last night's service and some even sent pictures of the crowd praying.  It humbles us to know there are so many praying, giving, and loving on us and our family. 

He is much more stable now and we think we'll get to go home soon; he definitely is here one more night, but we're praying to go home with a stable, hydrated Keller in the next couple of days, and we especially pray for 1) no more fever and 2) that his week of fever won't delay his heart surgery or cause any post-op difficulties.