Sept(HELL)ber 2011

WARNING: THIS IS LONG :)
Monday September 26th:
Evan was not himself. Nothing would console him. I thought maybe it was teeth, but this was something more. He wasn't eating, wasn't sleeping, seemed miserable. Cried for hours. I knew this wasn't normal so we went to the ER. The ER doctor did an ex ray of his tummy as I told him it seemed to be sensitive and he had some diarrhea. The Doctor didn't find anything and 4 hours later sent us home advising Motrin and pedia-light. We got home, and he was not any better.

Tuesday, September 27th:
I called our pediatrician the next morning and made an appointment. We couldn't get in until 2:30 PM. All day, he cried, I cried and I could tell he was getting worse. At this point he had developed a fever. Grandma went to the doctor with us and Evan was miserable during the exam. He screamed every time anyone touched his tummy. Our doctor originally suggested he had a stomach virus and to let it take it's course. My motherly instincts were screaming at me that this wasn't the answer. I asked our doctor right before he let us leave, if it could be a possible appendicitis. He said that was unlikely, but he wouldn't rule that out entirely. So, he sent us to Children's Hospital for an ultrasound.

During the ultrasound, Evan screamed and cried and clearly something wasn't right. The technician couldn't tell us anything, therefore brought the radiologist in. We were told he had something called a Urachal Remnant. Ok....what does that mean? That meant, this could be an abscess leaking poison, essentially, into his body. I was shocked when we were told it was fine for us to go home after they catheterized him for a urine culture and drew blood. That was agony for him and I both. I couldn't stand seeing him in that kind of pain so Danny and Grandma Waring went in and stood brave with him. (I think the biggest reason I couldn't go into procedures like this is because I would make the nurses stop, which wouldn't get us anywhere.) After that, we drove home relieved in a sense but also perplexed about this odd development. As things settled down and Evan fell asleep out of pure exhaustion, Danny and I began to research "Urachel Remnant" on the Internet. Perfect right? The perfect place to find information that causes panic. However, we thank God for our persistence as this is what landed Evan in the hospital. We called the on-call Doctor from our clinic and requested he call us back, not a nurse. The Dr called back and Danny filled him on our situation. He told us that if Evan truly had this remnant, then he needed to be hospitalized and that he would admit him that night. My heart sank into stomach, but again I felt some relief that we were going to be in the care of doctors and nurses at Children's.

Wednesday, September 28th:
We were admitted to the 4th floor at Children's at 3AM. (We got there at 10PM and had to wait in the ER.) After answering dozens of questions and getting Evan's IV started, he was resting finally. None of the doctors really seemed to know what was causing Evan to be showing this consistent, excruciating pain.
I woke up to a surgeon in a full suit and tie at 6AM (NOTE: I slept in the crib with Evan...His favorite position, head on my chest.) telling me they would likely need to operate that morning. Laying in a crib hospital bed, going on about 5 hours of sleep in 3 days, I was very emotional and confused. About an hour later a team of doctors came in to discuss Evan's condition. At this point, the radiology report showed that remnant was so minuscule, that there was really no reason for concern and they called off the operation. Our pediatrician took Evan off the antibiotics and ordered us to stay for observation for one more day/night as this was likely viral. Yeah! Relief! He was acting better (come to find due to the antibiotics,) eating a little bit, and no more fever. What a scare, but feeling lucky that we are able to go home soon.

Thursday, September 29th 2AM:
I woke up to the Chief Resident telling me that some blood work came back from Evan's culture on Tuesday and showed that it was growing Negative Gram Rods. Ok...WHAT? What the heck are Negative Gram Rods? My heart started racing as I could tell he was very concerned and woke me out of a dead sleep. He said they needed to draw more blood right then to further test and start him back on antibiotics immediately. I completely lost it, and sobbed to the doctor begging him to wait until morning as Evan was finally sleeping. I will never forget what he said "Kelly, if I didn't deem this 100% necessary right now, I wouldn't be doing it." "Deem necessary?" This was Doctor jargon I chose not to challenge. I couldn't handle watching them draw his blood, so Danny held his little hand and reassured him it would be ok. I remember sitting in the hallway listening to Evan's screams and felt so helpless. I just sat there and paced and sobbed until it was finally over about a half hour later. My poor baby, how could this be happening?

7AM: A team of infectious disease doctors wake us up and let us know that they are on Evan's case. They tell us that Negative Gram Rods are a bacteria growing in his bloodstream. At this point, they are stumped  to the cause of this bacteria and ordered more tests. One of them being a test for meningitis which required a painful spinal tap. My cousin Stacy, a charge nurse on that floor and my rock, took care of Evan during this procedure. The resident originally told us that he could not be sedated in any way. Stacy handled that one! She got a mild sedation ordered and went in with him as they wouldn't allow a parent. I of course cried when they took him from me. It seemed like 2 hours until I got him back. Stacy brought him back to me wrapped in his blue blanket and resting peacefully. She kissed his face and held his hand during the procedure as if he were her own, I love you Stacy! The humorous part to that is the that Dr doing the Spinal tap didn't know Stacy was related to Evan. Stace said she got some odd looks from the Dr as if she did that with all the patients at Children's, lol.  Now we wait. Meningitis test, Viral and Bacterial, Negative. Thank God! But now what? What is this bacteria growing inside of my baby causing him to be so sick?

Friday, September 30th:
It's become routine for me now to wake up to the infectious disease team and round of surgeons. There would literally be 6 to 7 doctors or students, examining him, questioning us, teaching each other, and yet nobody knew what was wrong. They actually referred to him as their "Little Mystery Man." At this point the very strong, high doses of antibiotics through IV were making Evan feel so much better. He was smiling, eating, laughing, and sleeping well. The only thing holding him back was that damn IV in his foot! He couldn't do much with that. Try confining an 8 month old attached to an IV pole for hours and hours, challenging for sure. While nobody could tell us what was wrong until the type of bacteria was identified all we could do was wait. I overheard the attending physician say Evan could potentially be in the hospital on IV meds for 14 to 21 days.

Saturday, October 1st:
No news for the Mystery Man...Just continue to wait. The days were getting longer and we all grew more and more anxious to break out of there! As the day went on, Evan's IV seemed to be going bad. The nurses tell me that an IV normally last 3 days, and then they are replaced. What?! I had no idea. I thought we had been through all the poking and prodding and were on the road to Edna Street (te hee.) I had high hopes we would get through the night and pull the IV in the morning and be released. Not so much.

Sunday, October 2nd:
This marks our saddest day. My hope that the IV would last a little bit longer didn't last. It had to come out, it wasn't flushing properly and was burning him when they gave him the medicine. As Danny and Evan and the two wonderful nurses walked into the procedure room, I dragged myself out the waiting area so I couldn't hear his screaming. My dad (Grandpa) came up and kept me company. The door opens to the waiting room after about 30 minutes, and it's Danny and Evan. Yeah! Done? Nope. Danny said they were on try #3 and couldn't get the IV started. One more try, then they would need to call in the helicopter med team to try.

Ok, try #4 didn't work. Call in the Med Helicopter team.

Try #5, this time Grandpa Waring went in with Danny and held Evan's hand. I can't express the pain watching your child go through this. I couldn't do it, I couldn't go in. The door opens and I think, Thank God. It worked. Nope. Couldn't get it. Time to call the pediatric anesthesiologist for try #6.

Try #6, the on-call anesthesiologist was at church seeing as it was a Sunday, and got there when she could. Because this was so difficult for all of us witness, Aunt Sarah went in with Danny and Evan this time. Danny is amazing under pressure and also so brave for his babies. I see the nurse coming down the hall..."Did they get it? Oh please tell me they did." Nope, fail. They were running out of sights on his body to try. The last option was to call up the Surgical Nurse and have her try his ankle. If that didn't work, they would need to try his head. As we waited for the nurse, I held Evan and cried as he looked at me out of pure relief. As if he was saying, "Please don't let them take me in there again."

Try #7, I handed Evan to Danny and watched as he and Grandpa went into the procedure room with the surgical nurse. I prayed and prayed this would work. Within 10 minutes, the doors open and I see Danny, Grandpa and Evan holding their heads high and all eyes full of tears, it worked. I wanted to kiss that nurse! None of us will ever forget that Sunday morning.

Monday, October 3rd:
Woke up to my team of infectious disease buddies...They ordered a VCUG. This is the insertion of a catheter to watch Evan urinate to be sure everything was functioning properly and for the purpose that the urachael remnant could be ruled out completely as not being a concern. Stacy did his catheter and Danny held his hand. I waited outside the radiology room for the results. Everything was perfectly fine. How odd that this is what brought us to the hospital in the first place? We would have never been admitted had they not found this. Evan was so sick due to this bacterial blood infection, not a urachal remnant. The only reason they drew blood was because of the remnant found on the ultrasound from Tuesday. The only reason he had an ultrasound was because of the power of motherly instincts and  my being "that demanding and obnoxious" mom toward the doctor. I keep saying "Thank God." Who else is there to thank? How was that not an act of God urging us not to settle on the fact that Evan just had the stomach flu?

We head back to our room which was sadly becoming home and find the infectious disease team there to greet us. "Good news," she says. "We have identified the bacteria." Kingella Kingae. This very rare bacteria traced back to a sinus infection that he had back in early September. It is a transient bacteria and can come and go when anyone has an upper respiratory infection. It can, but very rarely cross over into the bloodstream.  The chances of this happening are 12 and 100,000. We think he should play the lottery!

Due to the new findings, we can go home on oral antibiotics! We couldn't pack up our things fast enough. After a couple hours of standard release protocol, we left. I left out of such excitement, but also felt this sense of guilt and pain in my heart. Here we are, taking our healthy baby home, all the while I waved goodbye to a mother who told me earlier in the week that her 6 month old's brain was dissolving and his chance of survival was slim. Or the little 2 year old boy that was two rooms down from us that had been there for weeks attached to an IV pole...So unfair and such an eye opener to what really matters in life. Evan's hospital journey isn't comparable to what many children and families suffer from. I once again Thank God for this wake up call and reminder not to take anything for granted. Every moment is a precious gift. And Evan...What a champ! He endured so much. This experience has helped shape him into the loving, strong and brave individual he is becoming.
What a week...whew.