Evan and Darcy both have nasty colds right now, but I can't help but be thankful that they are healthy otherwise.
This last month has been a bit of a nightmare for us. It all started the last week of June. My mom noticed that Evan's face was a bit swollen under his jaw, and he wouldn't let anyone touch it. Of course, I panic and have Patrick call Mark, our EMT neighbor at 11 o'clock at night. Thankfully, Mark rushes over and relieves our nerves by letting us know that Evan most likely has an infection somewhere in his body and his glands are just swollen because they are working so hard fighting it off. Okay, fair enough. I can sleep on that, and call the doctor in the morning.
The next morning, after Evan waking several times during the night feverish and crying, I call the doctor. By 11 am, I am sitting int the pediatrician's office. The doctor examines Evan, and tells me the same thing as Mark, except the doctor sends me off with a prescription and a "call me if you don't see improvement or it gets worse." So, we start Evan on antibiotics on Tuesday. By Thursday, his face is obviously worse. I want to cry every time I look at him. Something is seriously not right with my boy!
Thursday, I call the doctor and tell him I think it's getting worse. I ask him if i should give the antibiotics a few more days to work. Not surprisingly, he tells me to bring him back in. I am not too worried at this point, just irritated that I am going to have to pay another $20 co-pay to have the doctor say, "watch it and bring him back if it gets worse." I was not at all prepared for what was about to happen.
That afternoon, the doctor takes one look at Evan and his face becomes very somber. I'm not panicking at this point. Okay, maybe just a little. The doctor examines Evan, tells me he definitely thinks it's getting worse, tells me a few things it could be including some crazy disease I've never heard of called atypical microbacterium and then throws out the worse thing I can think of, cancer. PANIC! I'm desperately trying not to start balling right then and there. I say to the doctor, "but it can't be cancer right? There is no way it could come on that quickly." The doctor says, "I don't think it is cancer, but I'm not going to rule it out because facial cancer is very aggressive and it's quite possible that this could be cancer." Double Panic! At this point, I can't even think of anything but the possibility of my baby having cancer. The doc says a few more things to me and excuses himself from the room for a few minutes. I can't even look at Evan without losing control of my emotions, so I spend my attention on entertaining Darcy on my lap. After what seems like an eternity of me sitting there trying to stay calm and not think negatively, the doctor returns with one of his colleagues and asks me if it's ok if he has a look at Evan. Sure. Have the whole office look at him. At this point I just want him to get better. The second doctor examines Evan and says nothing. Both doctors leave the room to consult, for what seems like another eternity. Evan is getting restless, so I start to read to him, and then I lose it. I can't even read a sentence without my voice cracking. Evan is concerned, "What's matter, Mommy? Why you crying Mommy?" I can't help but thinking this could be the end of life as I know it with my healthy little boy. Now I am really crying and I can't stop.
The doctor comes back in, apologizes for upsetting me, and then tells me he wants me to take Evan straight to the hospital to have a Cat scan and some x-rays. But first he wants to draw some blood. I'm a mess. I hand Darcy off to some random nurse, and tell her I can't hold her right now. Then I take Evan to the lab to draw some blood. Nurses are staring at me as I am hugging Evan and trying to calm him through my sobs. By the time we leave the doctor's office, Evan and I are both crying uncontrollably. At least Evan has a band-aid and I sticker to explain his outburst.
I buckle both kids in their carseats. Evan has stopped crying at this point and realizes I'm still crying. "What's matter, Mommy?" he keeps asking. I call Patrick at work and I can barely choke out the words, "the doctor is sending Evan to the hospital to run some tests. I need you!"
I drive across the street to the hospital, cart both kids in and start the admission process. Thankfully, Patrick arrives while I'm still filling out paper work. The night just keeps getting better. We're admitted into a hospital room, where we are told to try to get Evan calm enough for the Cat scan. Evan's freaked out about the hospital as it is. Then they come to put in an IV. After several attempts, Evan balling and screaming "all done, all done, all done," they finally get the IV in. I have to stay in the hospital room and nurse Darcy while Patrick goes in to the Cat scan room to hold down Evan. I can hear Evan screaming and crying, "All done, go home, all done." It's awful. Finally we're done with tests. We're told we should hear from the doctor that evening. I practically sit on the phone until 8 o'clock that evening. A nurse calls and tells me that they couldn't see anything that appears to need emergency surgery on the scan, but they want me to meet with a specialist the next morning. They will call to schedule.
At 8:30, Friday morning I get a call from a nurse. My appointment with the specialist is scheduled for 9. Evan's not even awake yet. I rush to get us both dressed and head to yet another doctor appointment. The specialist didn't make me feel any better about the severity of the situation. He tells me the CT scan was too blurry to tell what was going on. He still can't rule out cancer, but he doesn't think that's what it is. He wants me to put Evan on antibiotics through an IV for the next 5 days. I am to go home and wait for the IV nurses to call me.
Later that afternoon, I get a phone call telling me to take Evan to a place called the
Prescription Center. It's time for another IV. Knowing what we're in for, I drop Darcy off at a friends and bring Patrick with me. The next two hours are devastatingly sad. Evan is swaddled in a sheet, while Patrick and I take turns holding him down, and the nurses attempt to get a needle in his veins. It takes seven tries. Evan is hysterical by the time we're done, and so is everyone else in the room. It was not fun. We're told that Evan needs two medicines pumped into his IV every 8 hours. We're expected to keep him still for an hour each time we do this. Joy.
Graciously, Patrick's mom sends us a text letting us know she is on her way. I feel a huge sense of relief knowing that I am going to have someone, an RN no less, to help me with all this. We try to let Evan enjoy the holiday as much as possible. We take him to the parade, and I can't even get Evan to eat or drink or smile for anything. Some people throw some candy in Evan's direction and he starts to sob hysterically. This is not my boy! What is going on?
By Saturday afternoon, after four doses of strong antibiotics, Evan's face is looking worse and worse to me. Everyone else is trying to be optimistic, but all I can see is his swollen sad little eyes, looking at me through a face I almost don't even recognize. All I can think is this still could be aggressive cancer and we're just wasting time with antibiotics. I call the ENT specialist and tell him that I don't think he's getting better. He tells me to take Evan to the ER asap and tell them that we need another Cat scan. The ER doctor tells me that giving Evan another Cat Scan makes him much more likely to develop brain cancer in the future. I'm furious at this point. I scream, "What are you telling me to do then?" I'm losing it. My mother in law, calls Patrick and tells him to leave work and get to the hospital.
This time I go in the room with Evan for the Cat scan. Evan is terrified by anyone in scrubs by this point. He's knows they might poke him again. He just keeps crying, "no more owies, no more owies." It's completely heart breaking. I am sitting on the hospital bed, holding Evan on my lap, while the lab techs are trying to get Evan's IV to work for the contrast. They keep talking about another IV. I keep telling them that's not going to be easy. It's hurting Evan, he's scared and panicked. I'm trying not to cry. Then Evan's sobs change to words. He's screaming, "Lead me. Guide me. Walk beside me." I'm gone. I start sobbing hysterically. The lab techs keep asking if I'm okay. All I can do is nod.
Finally the ENT specialist, Dr. Baker, comes to talk to us. The results of the scan show that it's not a tumor, thank heaven, but there is an abscess. He needs surgery immediately, and he'll be in the hospital for a while. We decide we want him at Primary Children's. We turn down the helicopter transport. And head home at 10:30 pm to start packing for Salt Lake. An hour later we're on the road, with Patrick's mom and sister in the van behind us. Half way to Salt Lake, Patrick and Diane are too tired to keep driving. I am so full of adrenaline there is no way I can sleep. I offer to drive the rest of the way. We decide it's probably not safe. We all try to get comfortable in the vehicles and get some sleep. A couple hours later, I wake up Patrick and tell him we need to get going.
We get to Primary Children's hospital by 5:30 am, and the nightmare starts again. Evan has to get another IV. After what seems like hours of holding Evan, and hearing "no more owies," and the chorus of "I am a child of God," again and again, the ER nurses and "IV team" have literally tried every vein in Evan's hands. They are finally able to get an IV in his foot. Even the nurse has tears in her eyes by the time we're done.
At least a dozen doctors and residents have to examine Evan in the next few hours before they determine how to treat him. Evan's surgery is scheduled for 2:00 pm on the 4th of July. Just when I think things are going to go up from here, the anesthesiologist tells me that Evan's neck is so swollen that there is a chance she won't be able to get the breathing tube in and he could die. Being the pessimist that I am, all I can think is "he could die." Saying good-bye to him as they rolled him into surgery was one of the hardest moments of my life. "He could die."
The surgery is successful. The surgeon, Dr. Park, is able to clean out 80% of the infection. He tells us that it looks like atypical micro-bacterium tuberculosis. They took samples and sent cultures to labs in Washington and Colorado for testing. Then he tells us that Evan needs to be on 3 antibiotics for the next 6 months. And he could possibly have this disease for two to three years. It could be weeks before Evan has movement in his right lip, and years before his face is completely back to normal.
That night, I have to leave the hospital to take Darcy to a place where we can finally get some sleep. Thankfully, Patrick was able to get out of work so he could be there for Evan. I leave the two of them snuggled together on the tiny hospital bed.
2 days later. Evan is still not himself. He still won't eat, drink, talk, or respond to all his many visitors. He has to stay in the hospital until he eats and starts acting normal. It kills me to see him in the hospital, but I'm almost relieved when they tell us he has to stay at least one more night. My little boy is not himself and I don't know how to help him! I want him in the safest place he can be, and Primary Children's is the best I know. Monday night, Patrick calls his brother to come over and the two of them give Evan a priesthood blessing. I stay for the blessing. Then leave to take Darcy to Patrick's grandparents for the night. Patrick calls me minutes later, and tells me Evan is drinking and talking. Yay! Thank God. The blessing worked.
The next afternoon, Evan is doing much better and they release us from the hospital. We are told it could be a week to ten days before we know if he has atypical micro-bacterium. We are sent with four kinds of antibiotics to give to Evan 3 times per day, and a prescription to have Evan's blood drawn weekly to make sure the drugs aren't killing his liver. Great. What next?
I stay in Salt Lake a few more days to be close to family and make sure Evan isn't going to be re-admitted to the hospital. Giving him the meds everyday is a nightmare. Evan gags and pukes them up and cries, "no more icky medicine." We have to be the bad guys, and force Evan to take his meds over and over again everyday.
I came home to find our house had been broken into by our friends. Dinner was on the table, the front of the house was completely decorated with hand cut hearts. The disastrous house we left was cleaned, and there was a basket of toys for Evan tied with balloons. Evan screamed "hearts." and "balloons" with excitement. I cried. What a week it had been. It was so wonderful to come back to Idaho and feel that we are loved.
A week later I returned to Primary Children's for Evan's follow up with the Doctor. Dr. Park tells us that the results came back negative. Whatever caused the infection, was not atypical micro-bacterium. Evan no longer has to be on antibiotics. I can't believe it's over. The cause of this ordeal remains a mystery. Our little boy is okay!
My fun sister in-law, Sarah, decided to start a new family tradition, Cousin Camp! The idea is to get all the cousins together for several days of fun, and that's exactly what we did.
Sarah was nice enough to host Cousin Camp at her house this year. The kiddos and I got to stay in the luxury suite (the Hamblin's basement) for four, fun-filled days. This is what a typical morning breakfast looked like at cousin camp.
Day 1: The Children's museum at the Gateway. This is the only day we actually had all the cousins together. Milo and Owen had to go to Colorado the rest of the time. :(
A trip to the Gateway wouldn't be complete without playing in the fountains.
Day 2: Classic Water Park. Evan played on this slide for hours.
Oh the joys of the kiddie pool.
Good thing Aunt Ninnie was there to catch Evan at the bottom of the slide in the deep dark depths of the 18 in kiddie pool. Evan was so funny. He would go to the top of the slide and refuse to go down until Ninnie was at the bottom to catch him. He could do it himself but he'd rather sit there , holding up the line, yelling, "Ninnie, where'd Ninnie Go?" Of course, Emily would run right over and save the day.
Max and Evan
The girls
Darcy could sleep anywhere.
.......and she did. Even in the middle of lunch. I gave her a bite and she fell asleep before she even swallowed it. I guess we wore her out.
