Friday, December 2, 2011
28 days in the hospital
I've wanted to write a full account of our month in the hospital for quite some time but haven't felt emotionally ready to relive each and every life-sucking detail all over again. But considering the general deterioration of my brain since leaving work and increasing inability to remember anything, I figure if I don't do it now it may never be done. So here goes.
Davis was due to be born September 19th at 39 weeks via scheduled c-section. The Friday prior I awoke with debilitating pain in my abdomen. Given the close proximity to my due date we raced to the hospital and spent the day running every possible test without any conclusive results. The pain escalated to where I couldn't sit or walk without crying, yet the doctors had no clue what was wrong so they decided to go ahead and get Davis out for fear of really, the unknown. We now know that Davis somehow contracted the enterovirus from me while in utero and my body was essentially rejecting him. My immune system had sent all of my antibodies to the abdomen to fight the infection, my sweet son. Once he came out the pain was completely gone but we still didn't understand why.
At birth he was born with a fever and further testing came back with a positive but unidentifiable blood culture and low white blood cell count. Nothing that appeared too serious, so we went home.
Two days later I felt like he was overly sleepy but wasn't concerned until around 7 p.m. when he spiked a fever of 101. Within literally four minutes we had packed our bags and were on our way to the ER.
Because of his age (6 days) and his fever the ER doctor insisted upon three tests- a blood draw, a urinalysis, and a spinal tap, to which I literally told him he was out of his mind. Long emotional story short, we did them all. And I sat in the hallway outside his door listening to him scream for what felt like years as I truly cried harder than I have ever cried in my entire life. How could you do a spinal tap on a 6 day old? MY 6 day old? It was truly horrifying.
Good thing we did though, because his spinal fluid showed what appeared to be meningitis. We boarded the ambulance to the in-town children's hospital and arrived there at appx. 3 a.m. to begin a new battery of tests. After a few days we came to the conclusion that he had bacterial meningitis. At the time this was the scariest possible thing I could imagine as it meant 14 days of extremely strong antibiotics that could potentially damage his hearing and 14 days in the hospital.
A week later additional tests came back informing us that he had enterovirus. We met with infectious disease specialists, doctor after doctor after doctor, and decided to continue on our current course of treatment for fear that if he also had bacterial meningitis, we didn't want it to go untreated.
Those first few days we had a difficult time regulating his temperature. One night I'd be wiping him down with cold rags as he burned up with a raging fever, the next his temp would plummet and we'd be putting warm compresses in his swaddle. He also had several IVs through which the drugs were administered and eventually a PIC line in his arm and then later two CVLs, surgically inserted IVs that went directly into large veins. Each increasingly scary and each presented their own individual challenges and fears. It turns out Davis has very visible but extremely small, weak veins, and drawing blood or inserting an IV is both difficult (nearly impossible) and painful. The last blood draw before we left they actually had to draw from a vein in his head. Night-mare.
A few days after the entervirus diagnosis a doctor noticed Davis breathing faster than normal and we were whisked off to ICU after an echocardiogram revealed that the virus was attacking his heart. His little heart was enlarged, one of the valves was leaking, and it wasn't pumping efficiently. We spent a few days in pediatric ICU during which he was given drugs to help his heart pump, human antibodies to help his heart heal, and at one point a blood transfusion because of anemia and low blood count. We had to monitor his urine output to make sure his kidneys were receiving enough blood to function and watch for any change in his behavior that may signal his brain wasn't receiving enough blood.
After a few days he began to show improvement and we moved down to the cardiac stepdown unit where we figured we'd finish out his antibiotics and go home. Except that the day we thought we'd be told we were going home soon, a follow up echo confirmed my worst fears- his heart was getting worse, not better.
For the second time we left for ICU, this time the cardiac ICU which was a completely different environment. I wasn't allowed to stay with him, or breastfeed (so I pumped), visitors were limited, and conversation turned from being cautiously optimisted to talk of a possible heart transplant if this course of meds didn't work. This was by far the low point in our journey. We felt absolutely hopeless, bewildered, and scared to death. I couldn't eat and I barely slept. There were days I did nothing but cry.
48 hours later we were back in the stepdown unit, waiting and waiting and waiting to see if this time his heart would be able to function on its own. And if you've been reading this for long, you know, it did :)
In fact, his heart performed so well it shocked all of the doctors. His last echocardiogram actually almost appeared normal, a possibility none of us had ever considered. And with that, we were released. Of course, not without a myriad of daily maintenance medicines and immediate follow up appointments with the local cardiologist.
For 28 days I slept in his room by his side all but two nights, one of which I was literally kicked out. My mom stayed by my side every single day and went home at night where Matt was taking care of Madelyn. Wonderful friends brought us dinner (Kristin and Matt even snuck in a few beers much to the chagrin of my rule-abiding nurse), pastors visited, people we'd never even met brought us gifts to the hospital. It was an awe-inspiring experience and we're still moved thinking about it today. People all over the country were praying for our little guy and we truly felt it. I know people were praying for me too. Even though I think I probably seemed ok on the outside I was literally having a nervous breakdown on the inside. Then a few days before our release I had a complete change of heart- I realized that if he had to have a heart transplant than that was ok. He was worth every day we would spend in that hospital, and I wouldn't want anyone else in the world to be his mommy, so I better suck it up and deal.
I think one of the greatest blessings is that he was so small he won't remember any of the experience. He won't recall the excrutiating pain he encountered, the wires and monitors, or the smell of the hospital. I on the other hand, will never forget. Emotional drama aside, what it did provide us was 28 days of uninterrupted time together. I held him for 28 straight days in that hospital- praying, singing, crying, and hoping for an absolute miracle. And all I can say is I must be on God's good side because I got one.