If you read my last post, you know that our son has been very sick. After a trip to our pediatrician, two trips to urgent care, and two trips to the emergency room, my husband and I began to lose hope. Our son was not improving like the 5 doctors we had seen suggested he would. “It’s just a muscle, it will heal.” “It would be a waste of time to do an xray because his leg isn’t broken.” “It’s viral, we have seen a lot of this lately.” “I’m going to prescribe him an antibiotic for a bacterial infection. That should do it.”

We finally decided that we had had enough. There was no reason our son should be in excruciating pain and have a fever that reached 104.7 for more than 5 days. On Monday evening, July 8, I called Ask a Nurse. I explained that Kylan wasn’t showing any improvement and that his fever kept climbing. In my heart, I knew we needed to go to the children’s hospital 30 miles away and the nurse I spoke to on the phone recommended that we get there as soon as possible.

My husband stayed home with our two youngest children and my father in law came and picked me and Kylan up. He was in so much pain on the way to the hospital. His pain was off the charts and his fever was continuing to rise.

We wheeled him into the children’s emergency room and within 5 minutes we were taken back to a room.

They had to poke him a dozen times before they were finally able to get an IV and they done lots of blood tests. They gave him pain medication through his IV and he was in so much pain that it didn’t seem like the medicine helped at all. The doctor told us that his bloodwork showed extremely elevated infection/inflammation, and that his sodium levels and blood pressure were through the roof. Around midnight we were admitted.

That night we didn’t get any sleep. Doctors were coming in asking questions, nurses were checking his vitals, we were filling out admission paperwork, etc. Around 6am when a doctor came into the room and listened to him breathe while he was sleeping, she said she thought he may have developed a heart murmur from being so incredibly sick.

My husband wasn’t able to be at the hospital during any of this and I was having to process all of this on my own.

Later on into the morning when the resident physicians came in, they thoroughly examined Kylan. When they stood him up, I immediately noticed that both of his legs turned blue. When they saw it, I could see the concern on their faces and heard one of them say, “Oh, cardiovascular.”

They ordered an ultrasound on his heart for later that morning.

Later that day around 1 o’clock, our nurse rushed in the room and said, “His blood culture tested positive for MRSA and he will be in confinement,” and we were told by a doctor that he had osteomyelitis. They started two antibiotics immediately and told us he would be having an MRI.

I’m here to tell you all that when you’re told your baby has an infection in his blood and that they’re afraid it has traveled to his heart, it knocks the breath right out of you. And then when you look up osteomyelitis? Tears will fall down your face.

Kylan was in so much pain. His body was so weak and knowing there was absolutely nothing I could do broke my heart. I sent out a prayer request to everyone I knew and as hard as it was, I had faith that God would clearly reveal what exactly was going on.

As he was pushed down in his bed to have an MRI, I couldn’t help but to feel helpless. He looked up at me so scared. So pale. So cold. He had just been given morphine to help make him a little more comfortable before his MRI and was sleeping off and on. When he closed his eyes tears started falling down my face. Why was this happening to the sweetest kid I know?

While he was having his MRI done, Jordan was finally off work and arrived at the hospital. We sat in that empty waiting room alone with a million thoughts and questions. How? Why? When?

Later that evening the doctor for night shift came into our room and went over the MRI results. He said that the MRI confirmed that the infection was in the MUSCLE, not the BONE like they had originally thought. We were under the impression that it was already confirmed by blood work that he had osteomyelitis and that the MRI would distinguish if it was acute, sub-acute, or chronic. The MRI did show a spot at his hip that could possibly be septic arthritis, but they were confident that it wasn’t anything to be worried about. After all, his upper left thigh was what was causing him excruciating pain, not his hip. The doctor went on to tell us that they had a specialist coming by the next day to check and that if it did turn out to be septic arthritis, they would have to drain the fluid from his hip.

This is a picture of him from that night when his pain was unbearable and his fever went up to 102.

On Wednesday the orthopedic surgeon came by and felt Kylan’s hip. He was a little iffy about it, but made the decision to do a procedure to draw fluid from his hip and scheduled it for the following day. Later on, the anesthesiologists came and talked to Kylan so he would know what to expect for his procedure. That is when I really sensed that he was scared.

That night/Thursday morning at 3:30am, Kylan started shaking uncontrollably and his fever went from 98 to 101 in a matter of five minutes. He started having chest pains and began vomiting. They added an additional IV to do a spiral CT scan to check for any signs of pulmonary embolism.

The results for the spiral CT scan were normal and showed no signs of a blood clot. However, it did show that he had pneumonia and that his lungs were filling up with infection, so they started him on another antibiotic immediately and gave him leg cuffs because he was having poor circulation. His oxygen was low and the infectious disease doctor had ordered an ultrasound on his left thigh to see if there was an abscess.

That afternoon before his procedure, the medical team came and spoke with us. You could see it on their faces that they all were very concerned. They told us that they were going to continue doing tests and trying different antibiotics, but that Kylan’s kidneys and liver seemed to be slowing down due to the infection and they told us they wanted to send him to ICU. Even one of the doctors was wiping away tears as they told us the discouraging news. We were told he could possibly have myositis, pymyositis, or necrotizing fasciitis.

On the way to his procedure, he developed a 103 fever and began throwing up again.

Jordan and I cried as we sat in the waiting room in disbelief. We couldn’t believe this was happening to our boy. We were still trying to wrap our heads around the conversation the doctors had with us. That was a day I will never forget. The whole team of doctors entered the room. As they spoke, one doctor picked up Kylan’s bucket where he had vomited and had a scared expression on her face as she whispered to the doctor beside her. It was impossible to listen to the doctor that was speaking because I was so focused on her concern across the room. After everyone spoke, one of the best doctors we had the pleasure of meeting, Dr. Justice, came and sat down beside us on the couch. His voice was so soft and his body language was very relaxed. He looked across the room and asked if he could explain things to us in a way that might make more sense. He looked us in the eyes and said, “Kylan isn’t getting better. He is only getting sicker and we don’t know why. It seems that this infection has moved to his kidneys and liver and we all agree that he needs to be moved to ICU for very close monitoring.”

The doctor that performed the procedure on his hip that day said that it went well and that he did suspect his hip joint was infected. He said the fluid he collected from his hip joint was very cloudy and thick so that led him to think it was full of infection. They scheduled the hip aspiration for the next day.

At 10 o’clock that night his fever was sitting at 101.2 and then jumped up to 103. He was on four different antibiotics and was continuing to vomit.

Friday morning around 8:30 they came to get us for his surgery. Normally doctors will not perform surgery when you are sick, especially with pneumonia, but we were reassured that it was worth the risk in Kylan’s case because the infection was much more of a concern than the pneumonia at that point. It took them over an hour with many sticks and using an ultrasound machine to be able to give him a new, stronger IV for his surgery. We came to find out rather quickly that they would NOT be able to get his veins. Every time they needed to draw blood whether it was for labs or cultures or just to give a new IV, they always had to call the techs with the ultrasound machines.

When they finally got a good IV, we were sent to the lobby to wait until the procedure was finished. Wrapping my hand around his ice cold fingers as I told him I had to leave was one of the absolute hardest things I’ve ever had to do. “I love you, buddy. We’re going to be right out here waiting for you. I’m not leaving you for long.” He was so incredibly sick that I don’t recall him saying anything. His big green eyes that were glossed over rolled over and looked at me. My mama heart broke.

Once the procedure was complete, the surgeon led us to a consultation room and said, “Man, I am so glad we did this because tons and tons and tons of infection came out of there.” He said Kylan had some trouble breathing under anesthesia due to the pneumonia, so they were going to let him wake up slowly and on his own. He was confident that removing all of that infection and cleaning out the hip joint would definitely get us on the road to recovery. We finally felt like we had turned a corner!

As Kylan was waking up, they moved us to ICU.

That evening we had some special visitors! I hadn’t seen Koby and Klara since Monday, so as a family we made the decision to have them come visit. That was the first day I left Kylan’s side. I took them down to the cafeteria and we ate some snacks together. I had missed them so much and thought about them every minute I was away.

Later that night Kylan developed another fever, but did well over all. On Saturday morning the nurses got him up out of bed to stir him up a little and I had never seen him so sick. Just sitting up was a complete workout for him. He was out of breath, started throwing stuff up, had liquid coming out the other end as well, and they thought he was going to pass out a few different times. His feet got really swollen and it worried me sick. They got him to the chair to sit upright for awhile, but he was completely worn out by the time he made it there.

That afternoon, one of the doctors that had been closely following Kylan’s illness came and visited with us. She was very emotional and said that they see kids all the time that have MRSA, septic arthritis, pneumonia, and myositis but that as far as she knows, they have never seen a kiddo with all of those combined so she referred to him as a very unique case. She explained that he was doing extremely well considering his circumstances and that she thought we were finally on our way to recovery. The best news was that they were closely watching his blood cultures and with each one, it was taking the bacteria longer and longer to grow, which meant that they were hoping with a few more cultures it would be completely free from his bloodstream and that would be when they could officially start antibiotic treatment. She said best case scenario we could leave in 5-6 days. Worst case scenario it could be 21 days and an at home nurse, but we were hopeful and continually prayed for his healing.

Sunday was a hard day. He vomited forcefully five times, but we seen improvements in a lot of other areas. Doctors said his kidney function was back on track so they were extremely happy with that. The blood culture they had taken the day before was still negative which was great news! His oxygen had been improving and we gave him a sponge bath which made him feel so much better. After we washed him off, we brushed his teeth, put deodorant on him, the nurse gave him new bed covers, a new gown, and chapstick. The surgeon came and pulled out his drain from surgery and he ate some salad and about 4 bites of pot roast for dinner which was a huge surprise since he hadn’t eaten in a week. Kylan made the choice himself that he felt well enough to pass on pain medication so nurses stuck to tylenol.

Monday, the 15th, Kylan had a rash pop up on his chest and the whole left side of his face and his ear turned BRIGHT red. Our nurse was very concerned and called doctors in immediately. It eventually went away on its own, but that didn’t make it any less scary for us.

On Tuesday, we were moved out of ICU and back to the second floor. He had vomited a few times that morning, but then got a burst of energy. He got up with his walker, sat in a chair, ate lunch, had an appetite for snacks and ate dinner. We even pushed him in a wheelchair out on the patio for sunlight and fresh air. It was a good day.

Wednesday morning was rough. He had Zofran at 6, threw up around 6:40, had benadryl for nausea at 7, and threw up again at 7:30. Neither of his blood cultures had grown anything so they said that more than likely the MRSA was gone and that he could finally get a picc line. They spent 2 hours poking him that morning for a new IV. They tested his vomit and the results weren’t ideal. His vomit tested positive for blood, which meant another medication.

On Thursday the doctor encouraged us to take Kylan home later that night. Finally, after 10 long nights in the hospital, 5 of those spent in ICU, his blood infection was gone, he hadn’t had a fever in a few days, and his kidneys had made a full recovery. The doctor seemed to think that he would be more comfortable at home and would get the rest his body needed. I was extremely nervous about administering his IV medication at home for the next 4 weeks and because his vomit tested positive for blood the day before, I was still worried about that as well.

A local home infusion company had his medication and all of the supplies we needed for home dropped off that evening. We were signing discharge papers at 8pm and were home by 9:30. Getting Kylan into the car was such a stressful situation. He was in so much pain. A part of me questioned if taking him home was the right thing to do.

Here we are, day 6 of being home, and I feel like we are improving little by little each day. Yesterday was the first day he hasn’t thrown up (thanks to a new time and dosage of nausea medication) and we are celebrating that small victory!

He had a follow up appointment with his pediatrician yesterday. The doctor put in a referral for physical therapy that he wants started as soon as possible and mentioned that rather than starting school in 3 weeks, that Kylan may need to be on homebound for awhile. He is very disappointed about that because he wants so badly to start middle school with his best friends. The doctor also wanted lab work done to make sure Kylan is continuing to improve, but just like at the hospital, they poked him several times and couldn’t get a vein. The doctor told us that at our appointment on Thursday with the infectious disease doctor, we could expect them to draw blood from his picc line. Something that the pediatrician’s office couldn’t do.

Throughout our hospital stay we had so many friends, family members, employers and coworkers help us out with our other kiddos, food, our pets at home, and most importantly, with prayers. We had so many people praying for our boy and so many unexpected visitors. Kylan had no idea he meant so much to other people. To each and every one of you who stopped by, brought gifts, cards, money, or just said a prayer, thank you. To those of you who helped care for our other kiddos while we had to be away, thank you for loving them, feeding them, and keeping them safe. And to my mother in law who made sure we were ok each day, both physically and emotionally, thank you for bringing by necessities, for doing our laundry, for praying each day, and for being our shoulder to cry on. There is no one in the world like you and we are so grateful for all that you have done. Bringing by chocolate cake with your famous peanut butter icing once we were back home tops the list, though! I’m only kidding. Kinda.

If you’re a mama and you’re reading this post, I want to beg you to never take a second with your babies for granted. Love them fiercely and wholeheartedly each and every day because they can be taken away from you in the blink of an eye.