[UPDATE] On Friday I was freaked out. Kyle was sick again and I was sick of him being sick again. With a fever that was not letting up and after a frustrating day of Kyle seeming to get worse instead of better, history told me that we had better do something. I knew it was Friday and we did not want to wait until Monday. I was not up for a Sunday ER visit. Kyle needed to be seen or at least I think he needed to be seen. I called and spoke with my very favorite nurse at my very favorite pediatrician’s office. She is well aware of Kyle and his recent health history. “Beth, you need to bring him in before the weekend starts.” Continue reading “Updates and Moving Forward”
Today my writing is sloppy and brief. I will fix it when I can. Shortly we are leaving to take Kyle to the doctor.
As most of you know, a year ago Kyle was diagnosed with Stevens-Johnson Syndrome. Recently I began sharing our story. I have alluded to the fact that Kyle is still not out of the woods. Today is another reminder of how delicate life is. His immune system is weak. When Kyle gets sick his body always embraces the whole go-big-or-go-home attitude. Strep Throat can get him back in the hospital and a cut will turn into a serious staph infection. That’s just how it is, our new normal. Two weeks ago he had Strep Throat (again), Hand, Foot & Mouth, and a Staph Infection on his upper thigh all at the same time.
Last night I came home from the Salt Lake City H&M Grand Opening Event (pays to have press connections, by the way). When I walked in the door, I could hear Kyle moaning. I settled him and about an hour later he came running into my room screaming. “MOM, MOM, I can’t breath! My stomach! Mom! Mom! I don’t feel well!” Deliriously I watched him try to throw up in my bathroom and eventually we made our way to the kitchen where after a few minutes of helping him relax (or relax as much as one can right before you throw up), he puked his guts out and continued to puke his guts out all night long while Dave and I played chicken with each other over who would get up and be with Kyle next.
It may be nothing. These days with Kyle, it often is somthing. My head aches and I am not sure what to do. This is how we roll.
Simultaneously numb and completely in shock. That is how I have been and continue to be. Slowly I am coming back. We are all coming back. On February 6, 2011 I wrote the following:
Seeing Kyle’s fingernails and toenails peel off layer by layer until they reach the underlying skin from the nail bed up is what knocked some life back into me. The realization that something so seemingly minor, something we did not even notice until today, eight weeks after Kyle was first admitted to the hospital, woke me up. The weight is heavy. His fingernails look so gross and so painful. When I first looked at them I thought they were bloody because he had been picking the scabs out of his damaged nose. I was wrong. These ten fingernails and ten toenails were destroyed and slipped by unnoticed, unnoticed until now.
Before this all happened, if I were simply dealing with Kyle’s freakishly peeling fingernails, I would have completely lost my mind. Now peeling in such a horrific way, I didn’t even notice.
I wonder how long? You can tell they have been peeling for some time. Every single day I care for Kyle. Every single day I look in his mouth, examine his eyes, touch his puffy face and ask him how he is doing. Every single day I give him a litany of medication, medication that are administered around the clock, during the night, during the day, when I want to sleep, when Dave wants to sleep, we can’t. We are making sure our boy is ok. These bloodied and peeling fingernails woke me up, yet right now they are so insignificant. Somehow looking at these bloodied nails, a switch flipped. I can no longer ignore my emotions. I can no longer deny my broken heart. I can no longer say,
“It could have been worse.” It just keeps on coming.
The physical, emotional and psychological pain I have watched Kyle endure this past year as a result of Stevens-Johnson Syndrome is pain I could not have imagined. The utter despair Dave and I felt as we watched all the doctors try to figure out what was going on was so frustrating that initially I quietly unplugged my emotions. I had to. I had to get us through each day. I had to be there for my family. Kyle was breaking right before our eyes and we were all completely terrified. Kyle’s agony kept me silent. I kept my tears quiet. I kept my despair out of his hospital room. When others broke down, I asked them to stop.
“You are scaring him. And he does not need to be scared.”
The week before I took Kyle into the pediatrician he was home with a cold.
Kyle October 2010
On Tuesday, October 19, 2010, Kyle came home from school and said he was not feeling well. He sat on the couch and almost immediately fell asleep. Eli’s Parent Teacher Conference was at 4:00. Dave came home from work to attend the conference too. The three of us left while Kyle remained asleep on the couch. When we returned an hour later, Kyle was still asleep. Kyle never takes naps. He felt warm and sounded like he was getting Croup. Because he has a long history with Croup and the Croup getting really bad really fast, I decided I should take him into a doctor. Usually I would take him to his regular Salt Lake City Pediatrician, but because it was almost 6PM, the SLC Pediatrician’s office was closed and I did not want to end up in the ER. Kyle did not need to suffer. I called the local Pediatrician. Even though he was a new patient, she was happy to see Kyle.
By the time we arrived at the doctor’s office, Kyle was much worse. His fever was 102, he could not catch his breath, he was so pale and was totally freaked out. His throat hurt. His voice was hoarse and he sounded like a very sad baby seal.
The doctor thought he had Croup too. She tried to give Kyle a breathing treatment, which after a few seconds he refused. Then she gave him Oral Steroids and 600 MG of Ibuprofen. She prescribed two different types of inhalers and sent us on our way. I took him home. Then Dave drove over to the Pharmacy to fill Kyle’s prescriptions. Once Dave was home, we gave Kyle his medicine and put him to bed. During the night we closely monitored him. Kyle did our usual Croup-at-home remedy, which consisted of taking a long hot shower and then standing outside in the cold. Kyle still felt lousy the next morning and stayed home from school. By the afternoon he was feeling much better. By Friday, when my mom was with him, he seemed even better, yet his intense cough lingered.
By Sunday Night, October 24, Kyle began complaining about how his eyes felt like they had sandpaper in them. Then after his shower the next morning he complained about how his eyes had been glued together. Because he had already washed them outI did see his glue-y eyes. My motherly logic dictated that he was probably getting Pink Eye. Again, because I had not seen Kyle’s eyes glued shut, I wasn’t quite sure and even considered allergies. Sure, his eyes were red, but I thought he would be fine. Additionally, Kyle hates missing school. Because he had already been sick so, instead of keeping him home, I washed out his eyes and sent him on his way.
That same day, Eli was gone on a play-date. At 3:05 PM I arrived at after-school-pick-up to get Kyle. The very first words out of his mouth, and while he was fervently pointing at his eyes, were,
“Mom, my eyes really hurt! They sting! I cannot stand it! They burn!”
I felt guilty for sending him to school and could tell things were much worse. I immediately asked if he wanted to go to the doctor half expecting him to say no. Emphatically he answered,
“Yes!”
Because we had seen the Park City Pediatricians for Kyle’s initial Croup diagnosis, I called them again and scheduled another appointment. When we arrived, the office staff said the doctor was forty minutes behind. Because we live so close, I told them we would go home and then come back. In those short forty minutes and on our way back to the Doctor’s office, Kyle suddenly freaked out and blurted,
“Mom, I think I burnt my tongue from my hot cocoa! I can hardly open my mouth.”
Because we were going back to the doctor I asked if I could have the doctor look at his tongue too. “Yes! Yes! Please! It hurts. I don’t think I can open my mouth.”
By the time we arrived back to our appointment, Kyle could barely handle the eye pain. Oozy green stuff was dripping continuously from his eyes and down his face. He looked like he had pink eye on steroids. His face and lips were beginning to swell. The doctor took his temperature and it was normal. She said she thought he was suffering from a really bad sinus infection, a sinus infection that had moved from his eyes to his tear ducts. Huh? Honestly, even then, I did not think she really had any idea what was going on. She took a big guess and threw some antibiotics at the situation. I am told that usually big guesses work. Then she looked at his tongue and said it was not ripped. What she did see were three big sores underneath Kyle’s tongue. She attributed them to the sinus infection. She prescribed 2,000 MG of Augmentin twice daily and we were on our way.
Kyle
Kyle stayed home the next day. However, because my neighbor had planned a wonderful pumpkin carving party and because Kyle seemed better after resting all day, we let him go. Kyle, Eli and I went to the neighbors while Dave, who was also getting sick and who was leaving early the next morning for a business trip, slept. As the night progressed Kyle’s eyes and face became even more swollen. His lips looked as if a bad Plastic Surgeon over-injected him with Collagen. The other mothers, who I do not know well, noticed Kyle’s face, talked amongst themselves, worked each other into a frenzy and then mentioned things like Cellulitis, the dangers of terrible eye infections and of course, death. I was completely spooked! The women continued to insist that I rush Kyle to the ER. Regardless of what was really going on, somewhere deep inside of me I had a feeling that something very serious was wrong. I just did not know what.
Kyle’s Pumpkin October 2011
My neighbor graciously offered to keep Eli and because I knew Dave was not feeling well and also leaving for a business trip the next morning, I accepted. I took Kyle home. Instead of racing to the Emergency Room, I paged the pediatrician and then called my friend, who is also my doctor. After talking to my them, after weighing the history of the situation and listening to how Kyle’s cough sounded, they both encouraged me to take him to the Emergency Room at Primary Children’s Medical Center. The Pediatrician told me to prepare and pace myself in case they keep Kyle over night. She thought they would put him in the Quick Treatment Care Facility and give him IV Antibiotics to push the infection out of his system. I packed a bag for Kyle and gathered his favorite Blanky Car (Blanket) and Bully (stuffed animal). We were on our way driving down Parley’s Canyon in the very first big snowstorm of the season.
TO BE CONTINUED.
Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome I shake my Fists at You!
(I know I said I would continue our Stevens-Johnson Syndrome Story. I have a lot already written and ready to post. It will have to wait until tomorrow).
Gunnel and Makeda August 2004
October 30, 2006.
Dave, the boys and I were in our hotel room at the Beaverton, Oregon Springhill Suites. The day before we had driven from Park City, Utah to Portland to spend Halloween with Dave’s brother, sister and their families. I will never forget what Eli said as we entered downtown Portland at the end of our long drive: “Hey Mom, I have an idea! Next time let’s take an airplane.”
My lovely sister-in-law, Dori, her husband Miah and their new baby Andrew had just stopped by to have breakfast with us. Mayhem is an understatement to what has happening in our tiny hotel room. After being trapped in the car the day before and now trapped in a tiny hotel room, the boys were ready to break free. Kyle was six years old and Eli was four at the time, and before they and their young cousin completely fell apart, we decided we should go swimming, which really meant everyone would go swimming but me. I was looking forward to the peace.
The television was on. I could hear SpongeBob conversing with Patrick in the background as I located the swimsuits. I was in the bathroom when I heard the ringing. I loked at the caller ID and saw that it was my super fly bestie, Marianne. I answered and our call went something like this:
“Beth, I am at my mom’s. I went over to check on her after she didn’t show up for dialysis. A police woman met me at the door. She would not let me in before she checked and made sure everything was ok.”
Because Marianne was so calm and matter of fact it seemed as though it had been a few hours instead of a few minutes since Marianne had found her mom. So I asked “Marianne, are you serious? She is dead? What happened?”
“Probably a heart attack.” Later they found that Gunnel’s heart simply stopped working, from one beat to the next, her heart was done. “Beth, she is in the other room. I don’t like it. She is on the floor and they won’t let me move her until the coroner gets here. I want to cover her. It does not seem right.”
It took me several “Whats?” and, “Are you serious?” to process that my dear Marianne was seconds away from finding her dead mother. It was confusing and surreal. I wanted to reach myself through the phone and be there with her. I wanted to fix it.
“Oh Marianne. I am coming. We are in Portland, but I will be there. I am coming. Don’t worry. I will be there.”
I remember hanging up the phone and seeing my sister-in-law, Dori’s eyes. I could see that she knew something was up.
“Beth, what happened?”
“Gunnel died. They think she had a heart attack. Dave. Dave. We have to go.”
In shock I quickly explained to Dori who Gunnel was, probably giving more details than necessary. I told her how she was Marianne’s mom and that I had known Marianne since I was five, that Marianne was more of a sister, that I had just seen Gunnel two years earlier at the birth of Marianne’s daughter, Makeda, that Marianne was in the process of a divorce and how sad it was that Gunnel died now. Even though Gunnel had been in poor health, her death was completely unexpected. She had actually been doing better.
Then, as I seem to do when things get really bad or really sad, in a breath, I threw myself on autopilot. On autopilot, I can deal. I can tell you every little detail and even tell you how sad I am and somehow I will not shed a tear. Not because I do not want to shed a tear. I am a mother and I have children to care for. I must get us to the funeral.
We stayed in Portland through Halloween and then drove ourselves back to Park City. We were on a plane to Minneapolis six hours later. The Minneapolis Airport is a hop away from the Mall of America and as we headed to the viewing, with nothing to wear, I had Dave stop. I stood in the Mall of America Banana Republic trying on black skirts and having the sales lady tell me the shirt I chose was too tight. In the dressing room, alone, I had I moment to let down. The sales lady pounding on my dressing room door, I say, “I am buying clothes for a funeral.” She didn’t seem to care. I said it again. “I am buying clothes for a funeral. My best friend’s mother just died! I have nothing to wear.” I still don’t think she understood and I really wanted her to understand. We had to be at the viewing so without the sympathy I was longing for, I opted for the larger size, bought a skirt and another outfit and we were on our way. In our rental van, I put my new clothes on. Dave had already changed and we would ready the boys once we arrived.
It was a beautiful fall day and the sun really was shining just so. Perfectly the rays hit the autumn leaves as we pulled into the funeral home. As sad as I was for my friend, a gentle warmth and excitement came over me. I was home. Immediately I saw Marianne’s brothers and knew I was where I needed to be. Like a birth or a wedding, a funeral is a place to connect. I was home and I was connecting. I found Marianne and stayed close by her side. She has always protected me and even in the midst of all of this, she was making sure I was ok.
Marianne, Beth & Sara
We eventually made our way into the viewing room. It always amazes me that the body sits alone in a big chapel-like room while all the guests find their ways into the small passages of the funeral home. It was the same when Dave’s father passed last year. Marianne and I had Gunnel to ourselves. I brought the boys in with me at first. They were not sure what to do and left. Marianne and I stood there. We stood there talking about sweet Gunnel. We imitated Gunnel and Marianne’s Dad, Jack, who had passed years earlier. “Gun it Gunnel.” Jack would say as he slammed his hand on the dash whenever she was driving too slow. Gunnel had bravely moved from Sweden to the United States as a young woman. We talked about how cool and awesome that was. We talked about her cooking. She was always cooking and making so much good Swedish food. We remembered her huge, belly-rolling laughter. We talked about how she never said an unkind word about anyone, even when we wanted her to. We talked about the time before her eye surgery how she had sat so quietly at Marianne’s wedding. She was freezing and needed her sweater. Because it was dark and Gunnel could not see well, she patiently waited for someone to notice. I was glad it was me. I was glad I had noticed and had that moment with her. We laughed about how easily everyone in their family cries. Marianne told me how much she already missed her mom.
“Beth, I talked to her every single day. I do not know what I will do.”
Then I noticed. I noticed what I had been doing. The entire time we were talking I was moving my hand through Gunnel’s beautifully set, soft silver hair.
“She looks so pretty.” I said. “I hope this is ok,” referring to me touching her hair.
“Oh Beth. You know it is. It is my mom.”
Since that time I have watched Marianne long for and miss her mom. I have seen those lonely moments and wished I could bring Gunnel back. Gunnel is not here to watch Marianne’s babies grow. And now, somewhere in the middle of my life, I see that I am part of the Sandwich Generation. We are raising our children while caring for and then watching our own parents die. Gunnel was the first. And since then I have seen more parents become ill and have seen more of our own babies be born. Dave’s dad passed away a year ago. And just last night another dear friend’s father died. It is such a strange place to be, right in the middle of this sandwich.
Over the next few weeks I want to share our story, the story of how Stevens-Johnsons Syndrome came into our life (twice), burned our house down and changed us forever. Our world completely turned on its head, I honestly do not know how we made it through. Truth be told, we are still not out of the woods and sweet Kyle will be dealing with the physical complications (like a very weakened immune system) for the rest of his life. Just this week he is getting over the combo-illness-package of Hand Foot & Mouth, Strep Throat & a nasty Staph Infection on his upper thigh. I am so glad he did not have to go back in the hospital. That’s how he rolls — now. Continue reading “Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome…”
Last week Dave and I dropped the boys off at my mom’s and while there she showed me a bunch of old pictures. They were tiny tiny copies of the originals. I quickly pulled out my cellphone and snapped a few copies of my own.
Here she is with me dad and a priest. She is beautiful. I do not know my dad. His name is Will.
