To organize some of my unsettled feelings lately I need to pick some of the thoughts and emotions going on in my head and heart and get them out. For those that don’t know, I am the type of person that when I am in a high intense emotional type “event” I have a natural lock down on my emotions and it takes a LONG time for them to surface and come out. This happens with good and hard things like adoption and finally holding your child, and things like when my daughter and my father end up in the hospital in the same month and again a couple months later. I have trained myself to take over and be the strength; not allow the emotion I may have on the situation come out.
So without further ado, sinking in part 1 is about my sweet EJ and Kawasaki Disease
Never heard of it? Yeah I never had either. It’s a disease, that although very treatable, the cause is unknown. You can be diagnosed A typical Kawasaki, meaning you have a couple of the typical symptoms but it’s hard to say if it is truly the disease or you can be diagnosed full blown Kawasaki which is what our EJ was. Here are typical symptoms of Kawasaki:
Kawasaki disease often begins with a high and persistent fever greater than 102°F, often as high as 104°F. A persistent fever lasting at least 5 days is considered a classic sign. The fever may last for up to 2 weeks and does not usually go away with normal doses of acetaminophen (Tylenol) or ibuprofen.
• Extremely bloodshot or red eyes (without pus or drainage)
• Bright red, chapped, or cracked lips
• Red mucous membranes in the mouth
• Strawberry tongue, white coating on the tongue, or prominent red bumps on the back of the tongue
• Red palms of the hands and the soles of the feet
• Swollen hands and feet
• Skin rashes on the middle of the body, NOT blister-like
• Peeling skin in the genital area, hands, and feet (especially around the nails, palms, and soles)
• Swollen lymph nodes (frequently only one lymph node is swollen), particularly in the neck area
• Joint pain and swelling, frequently one both sides of the body
• Children with Kawasaki disease are admitted to the hospital. Treatment must be started as soon as the diagnosis is made to prevent damage to the coronary arteries and heart.
All items I have highlighted in bold EJ had. She was going on the 6th day of a very high fever, she hit 105 at one point, many sleepless nights, and the bloodshot eyes, red lips, and strawberry tongue were there now. In fact she was so text book with her symptoms the ICU Dr. asked if he could take pictures.
On that 6th day I had contacted our family Dr. late that morning saying she was bad. I described her appearance, the fact she was not eating at all now nor drinking (I had to force her to take a sip) and so on. What the nurse told me at the time was I will pass this on to the Dr. and she will either prescribe something to make her feel better or want to see her. Umm, Ok. So it was after 5 p.m. and still no word. We went to my parents and she continued to get worse, and then the hubby and I called the Dr. on call. He told us to get to the emergency room because he did not like how this was sounding. At the E.R. they confirmed she was dehydrated and then also started treating her for Pneumonia because of one tiny spot on a lung X-Ray. EJ was later admitted to a room around 11:30 at night and EVERY half hour she woke and wanted to either rip out the very poorly administered IV or get out of bed and go home. We were both miserable. The next morning EJ’s fever spiked and I called the nurses. A flurry of crazy activity then begins to happen. EJ also looked extremely puffy to me which I mentioned and they stopped the fluids. (Our on call Dr. said they put too many fluids in her). At one point the on call Dr. comes in and said he wouldn’t have diagnosed her with Pneumonia like the ER Dr. had, but now things just aren’t looking good.
It was at this point, and I know a lot of them before this too, that I can look back and actually see where God was in control. He used our on call Dr., our friend, to tell us that he didn’t know what was going on and he would feel better if she went to *Blank* (a city hospital an hour away). We were very willing to do this and were thankful he felt he should send that order. At the time her stats were reading so crazy that they thought she was going to go into cardiac arrest, which they thankfully did not tell us at the time, but said Life flight was on its way. Wow, ok.
I have talked about our ICU experience before and won’t go into all that detail again, but let me tell you about what I haven’t talked about. I have not talked about the spiritual side of EJ’s disease that was happening right before our eyes. And yes I believe there is a spiritual evil that surrounds every sickness and disease because I witnessed it.
Our little girl likes to pray, asks to pray, and has even started mumbling her version of prayer lately. It has never been an issue about her not praying except that lately if Daddy prays a little too long she starts to get distracted by other things, but at any rate praying is something we do in our house as a family. As this disease started to progress in our daughter’s little body there were several times where when Kent went to pray over EJ she would push his hand and firmly say “NO”. There was one time in particular where Kent had just took his turn in bed with EJ in our ICU room and he put his hand on her head and started praying out loud. Again, EJ turned to him and pushed his hand and said “NO DADDY”. Kent then prayed silently over her and she was none the wiser. Some might think nothing of this, but we know in our heart of hearts that we weren’t just fighting to rid her body of this disease but we were fighting to rid her of the evil spirit within her as well. I would have never believed this before until I was actually in it, feeling it, hearing it, and seeing it.
Friends I couldn’t recount how many times I said silent prayers constantly that weekend to God for my sweet EJ, and I literally sang Jesus Love Me over a hundred times that first day. It was the only thing that seemed to bring her comfort as they poked and prodded A LOT. I had to be strong and help her as they poked and prodded and as I helped hold her down numerous times. She would always ask if it was done and I would say almost and she would just wine Okay. She was so very brave. I know I couldn’t have endured what she did. But do you see the good and evil here? The song Jesus Loves Me from Mommy brought her comfort but something in her wanted to ward off the prayers.
I allowed myself one moment that maybe lasted a minute that first day. We had been in the ICU for about maybe 20 minutes or so and I was waiting for my hubby to arrive. He came in and asked what was going on and with EJ in my lap, with all the wires and IV’s and everything hanging all over us; I just burst into tears and told him to ask the Dr. I allowed myself that one minute and then it was go time from there.
It seems here lately that I am thinking about this week and a half with EJ a lot. I’m feeling it deeply and thinking about what could or could not have happened. I cherish this girl, this precious gift from God, more than my words could ever do justice. I love her so much. To see her still processing everything that happened and know that she could have had major heart damage if we would have went just 1 day longer before treatment is just hard to process. The thing is OUR GOD had different plans. He placed certain people to step in when we needed it; our on call Dr., the AWESOME nurse in ICU and her wonderful quick working Dr.’s; that was all GOD.
I am so thankful and I am so glad to be feeling the happiness of this moment in our family’s godly path, to feel the sadness of the situation that I wouldn’t allow myself to feel before, and to grow that much more in love with my Father and my family. GOD IS WITH US ALL THE TIME. He does not take breaks, he does not forsake us, he is there carrying us through the best of times and the worst of times and in the end he always blesses us.
(Hopefully the cute pics of EJ help with my very long post!)
