Saturday, July 19, 2014

Presumed Meningitis

Life with E.J. at home thus far has been going pretty smoothly. He's a very good-natured baby, way more so than his sister ever was. His newborn sleepiness combined with his seemingly easy-going nature have made the transition to family of four seem pretty effortless thus far.

On Monday night, Eric and I were commenting on that very fact to each other. We were both marveling at how well our new life was going and what a great baby E.J. is. I mean, after Ellie was born, we had all kinds of nonsense to deal with: lingering health complications for me, Ellie's refusal to enjoy life unless someone was constantly holding her and bouncing on an exercise ball (she seemed to skip that "sleepy newborn phase" altogether), the worst kidney infection of my life. This time, however, there weren't any complicating factors like those. My recovery was going great, Ellie was smitten with E.J., and we were doing a pretty good job of balancing both kids and keeping everyone happy. And E.J. himself was just so mellow - I even commented that with Ellie, I knew the sound of her cry before we left the hospital, but I wasn't sure I could pick E.J.'s cry out of a lineup, because he just cried so rarely. Frankly, we agreed, it all just seemed a little TOO easy this time around, and we were both just sort of waiting for the other shoe to drop: the crazy fussiness to set in, jealousy to rear its ugly head on Ellie's part, something. It had all just been so perfect that it seemed too good to be true.

But maybe it isn't too good to be true, we said. Maybe we just got lucky. Maybe things are really just going to go smoothly for us this time. Maybe there is no other shoe to drop.

And then the universe laughed and chucked a shoe at us.

And so, now instead of telling E.J.'s birth story next as planned, I'm telling the story of his five-and-counting days in the hospital.

Ellie and I both came down with colds last weekend. Ellie's was in and out in just a day or two, but mine has lingered. Obviously, I was rather freaked out about exposing a week-old baby to any sort of germs, but it couldn't be helped. As of Monday night, he still seemed healthy so I was continuing to hope and pray and wash my hands until they were nearly raw to try to avoid E.J. getting sick.

But when E.J. woke up at 2:00 a.m. on Tuesday, he felt a little warm. I fed him and put him back to bed, but he was up again at 4:30 a.m. and definitely warm. A quick check of his temperature showed a fever of 101 degrees. We removed all his blankets and I fed him, and almost immediately after eating he threw it all back up - very unusual for him. We re-checked his temperature, which was still 100.7 degrees, above the "call the doctor" threshold of 100.4. So, I called the doctor, who said we had to take him to the emergency room.

It was around 5:30 a.m. when we got ourselves together and ready to go. We woke Ellie, who was in surprisingly good spirits (and quite excited to see the moon and the stars), and off we went to Wolfson Children's Hospital pediatric emergency room.

We had no wait whatsoever; they called us back while we were still registering. E.J. still showed a temperature at check-in, which meant they immediately started their entire "fever in infants" work-up: urine culture (via catheter), blood culture and spinal tap.

That right there was probably the worst experience of my life. We had to lay E.J. on that hospital bed and he just looked so small. I kept my view of what they doctors were doing obstructed by choice, but I couldn't block out the sound of my baby's cries as they did all that to him. If I didn't know his cry before, I sure do after that experience. I just sat there next to the bed feeling so helpless and so much pain on behalf of my sweet newborn. I couldn't help but cry myself but I tried my hardest to hold it together, because I could tell Ellie was scared, too. She's stoic like her daddy, so she didn't cry, but she hung close to me and I tried to reassure her as best as I could.

When they finished the blood and urine cultures, I was able to hold E.J. for a minute. As soon as he was in my arms he got calm, grasped my hand and just stared at me. It broke my heart into a million pieces to think about what he was going through, at only 11 days old.

Comforting E.J. after his first round of tests


We weren't allowed to be in the room for the spinal tap so we stepped out to the waiting room. Ellie very sweetly called out, "Bye, E.J.!" as we left the room, and then was thrilled to watch Sponge Bob on TV in the waiting room while I filled out some paperwork for the hospital. Finally they called us back into the room and I was able to cuddle and nurse E.J. while Eric and Ellie entertained themselves with the privacy curtain. The nurse tried to give E.J. some Tylenol but he threw that right back up.

Cuddled and comforted

It was explained to us that they do all this testing as a precaution to check for very serious causes of fever, such as meningitis. It's unlikely the fever is caused by anything like that, but in the event that it is, it can be devastating to the baby if left unchecked. So, it's a "better safe than sorry" situation. We were told that we would be staying in the hospital for 24 to 48 hours while they watched the cultures to see if any bacteria developed that would indicate what we were dealing with. So, before long we found ourselves upstairs, settling in to a room of the children's hospital.

And that is where we have spent five long, frustrating days, with another nine days ahead of us. Although E.J.'s cultures have remained clear, some other labs indicated potential bacterial infection. In particular, the doctors were concerned about the protein levels in his spinal fluid and his white blood cell count. He also continued to maintain a fever from Tuesday morning until midnight on Thursday. The doctors ran all kinds of additional tests: for respiratory infections, chest x-rays, belly x-ray, nasal swabs, more bloodwork. They just couldn't figure out what was causing this fever, so in the meantime they were treating it aggressively with antibiotics (via IV) every six hours. The thinking was that then if/when we did figure out what the culprit was, treatment would already be underway.

My poor little guy hooked up to the IV

The first day was particularly difficult. Eric and Ellie spent as much time at the hospital as possible, but Eric also had to make sure Ellie's needs were taken care of, so he took her home for nap and bedtime while I stayed at the hospital with E.J. (considering I am exclusively breastfeeding E.J. and still unable to lift Ellie after my c-section, there was no other option). The day was long and often lonely, and E.J. was just so unsettled. The only way to get him to rest calmly was to hold him, which was of course understandable after the ordeal he had been through but meant little to no sleep for me. I hated seeing my sweet boy so miserable, and that coupled with battling a cold myself, running on very little sleep and still trying to recover from my c-section (while sleeping on a hospital "couch" that folds into a "bed") left me a pretty big emotional wreck.

Peaceful on my lap

Then, E.J.'s IV went bad so they had to try to re-insert it. And they tried and they tried and they tried, with no luck. The poor kid was a pincushion for hours while they tried to get this IV going. They tried everything - his arms, his hands, his legs, even his head. Eventually they gave up and had to give him a few doses of medication by shot instead of IV, which he hated. I was so tired of seeing my baby poked and prodded and stuck and stabbed, and I hated that I couldn't protect him from it all.

Poor little baby arms

Hospital baby feet

By the second day, however, E.J. was much more his usual mellow, sleepy self. He just seemed better, even though is fever still lingered and he was still throwing up a bit. Yet all the testing still did not yield any clear results.

E.J.'s fever finally broke in the early morning on Thursday, and by then he was eating and sleeping very well. Still baffled by his lab results, however, the doctor sought other opinions from her colleagues. (She kept saying, "He doesn't look nearly as sick as his numbers indicate he is.") In particular, on Thursday she consulted with the head of Infectious Diseases at the hospital, who agreed that although the cultures remained clear, it might be the best course of action to continue treatment because there were still worrisome lab results that could not be accounted for. He mentioned possibly keeping us for 5 to 10 days for antibiotics, which left me feeling so frustrated and discouraged. I just wanted to get home and get my family together, but instead we were stuck in the hospital with no answers, only the knowledge that E.J. was fighting something and it could be serious but nobody could figure out what it was.

But then, Friday morning, things started to look up. The Infectious Diseases doctor came back and apparently had changed his tune. He mentioned that there was something growing in the blood culture, but he thought it was likely a contaminant and we would know that for sure in 24 hours. If so, he saw no reason to keep E.J. in the hospital! Halleluia, an end in sight! We were so excited about the likelihood of going home first thing Saturday morning.

Our excitement was short-lived, however. Later that afternoon, the pediatrician came in. As soon as she walked in the door, I could tell by her face that it was bad news. Apparently the Infectious Diseases doctor had overlooked or forgotten about some of the most important data in E.J.'s chart: the protein levels and white blood cell counts. When he was transferring our case over to the ID doctor who would be here over the weekend, he realized his error and retracted his recommendation to send us home. Instead, he wanted to keep us for another 10 days for antibiotics.

I was so incredibly upset. Eric was on his way to the hospital at that time and when the pediatrician left, I just cried and cried until Eric arrived. Then the pediatrician returned to talk to both of us. We learned they had finally assigned E.J. a diagnosis of "presumed meningitis." They use the term "presumed" because there was no bacteria in his cultures (the "gold standard" for meningitis diagnosis) but his other lab results were indicative of bacterial infection. Because E.J. is so young, the best course of action is to assume the worst and treat aggressively. Basically, there is a (pretty decent) chance that E.J.'s fevers were simply caused by a viral infection (possibly the cold Ellie and I have been fighting), and it has just cleared out on its own and no treatment is necessary, but there's no way to test for that to be sure. Because his numbers did indicate that the fever could be caused by a bacterial infection, it is best to assume that to be true and treat accordingly because there are no harmful side effects to the antibiotics he is on, even if he doesn't actually have meningitis. However, if we were to assume it was a viral infection and not treat, and it turned out that it was meningitis, the consequences would be severe. With a baby this young, you just can't take that chance. So, the verdict was in: diagnosis was "presumed meningitis," and recommended course of action was an additional 10 days of IV antibiotics for our little man.

He is such a trooper.

I was so discouraged. The time in the hospital so far has been challenging and lonely, and I know it has been no picnic for Eric, either, as he has been shuttling back and forth with Ellie twice daily as well as taking care of things at home. But at the end of the day, how can we complain about an inconvenience in our lives, when our baby's well-being is at stake? There's no need to even do a risk-benefit analysis, here. We do whatever we need to do to make sure E.J. is healthy. There is no other option.

So that's where we are: day five of fourteen total in the hospital. Rest assured that E.J. is eating and sleeping well and receiving lots of cuddles and love, and today they're inserting a PICC line so hopefully he won't be such a pincushion for the rest of his stay. The doctors and nurses have all been very kind to us so we're hanging in there. Eager to get out, sure, but hanging in there.

Aside from the helplessness I have felt while watching E.J. go through this whole ordeal, I'm constantly worried about Ellie and how she is handling it. She was separated from us already while E.J. was born, and now to be away from me long-term like this...I just don't know what she thinks of it all. She seems okay, but this has to be confusing for her. On the upside, she has been showered with gifts and toys from hospital staff - all items intended for the patient, but given that the patient hasn't yet learned to hold his head up, he doesn't have much use for coloring books and such. So, Ellie is cleaning up. And I am totally okay with spoiling her rotten until we get through this.

Ellie's haul!

Rocking her baby brother. At one point, he was crying and Ellie said, "He needs his Ellie!" Awwww.

Listening to the pediatrician's heart

I can't end this post without thanking everyone for their thoughts, prayers, love and support through the whole thing. Our family and friends have been so concerned, asking how E.J. is and praying for him, and getting their friends and family to pray for him, too. He is one loved little boy. And I have to also give a huge thank you to my mom, who, upon hearing that we would be in the hospital until Thursday, right away found substitutes to cover her Jazzercise classes for the latter part of the week so she could come up to stay with Ellie for a couple nights, freeing Eric up to spend more time at the hospital with E.J. and me. I know we would've been fine otherwise, but it made it so much more bearable for me to have Eric with me more during those first few days. Even if I didn't need the help with E.J., just Eric's companionship was a huge boost to my mental state and probably helped me avoid many an emotional meltdown. So thank you, Mom, for giving us that help!

Ellie and Grammy by the "big crayons," a hospital favorite of Ellie's

Now that we're facing even more time in the hospital, the offers to help have been pouring in from family and friends alike, and we are so grateful. I'm sure at the end of this I will have many more people to thank, but for now I'm just sending out a blanket "thank you" to everyone. Thank you, family for your offers to come help with Ellie or whatever we need (and we will probably be taking you up on them). Thank you to everyone who has said a prayer for E.J. Thank you to everyone who has called or texted or messaged to see how he is. Thank you to everyone who has taken even just a moment out of your day to think of him and wish him well. I have been posting updates on Facebook and the comments that those posts have generated have brought tears to my eyes - so many people from all stages of our lives thinking of our sweet boy, offering up encouragement and beautiful prayers. We are so blessed.

And of course, as always, Eric has been a rock. He is taking great care of Ellie, too, as well as making sure I am getting the rest/food/medicine/support that I need. In addition, he is juggling a lot of other life issues, such as securing a new house for us (more on that to come), dealing with E.J.'s health insurance, etc. He is really something. As much as I would prefer to avoid these sort of tough situations, I always come out of them feeling so blessed to have Eric as my partner in life. He and I are two very different people, and as individuals, we handle stressful situations very differently. But as a couple, in times of crisis we tend to find ourselves perfectly in sync. We each know what the other needs and we really bond together to get through whatever is before us. I am lucky to have found such a perfect counterpart to navigate life with me. He is incredible.

So for now, we're still in the hospital. I'll post updates should there be any, but it seems like we're basically just kicking back and hanging out while E.J. gets dosed with IV antibiotics every six hours for the next nine days. I'm planning to use my downtime at the hospital to catch up on some blog posts (birth story!!!!) and other projects, so you'll see some non-hospital-related content from me, too.

And again, thank you all so much for the love and support. We are one very blessed little family.

Now, let's get this handsome face better and HOME!

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