Inch by inch

Last Tuesday January 3rd was a very very hard day. It could easily have been the hardest day I've ever experienced. Monday night I prayed and prayed that the Doctors would know what to do to treat Josh and I really feel like that answer came. Although visually, it didn't feel like the answer came.
When we first got to the hospital on December 29th, Josh had lost lots of weight. He was down to 139 pounds. By Tuesday January the 3rd he was up to 178 in water weight from all the stuff they had been putting in him through the IV's. Monday night Josh started coughing really hard and then his heart rate went up really high (200 a minute) and he had a very tough time breathing. His lungs were filled with liquid. They had to sedate him and put a ventilator in his throat that would breathe for him. They also had him on heavy medication to control his blood pressure. They took him to the high ICU unit.
Seeing him that way was extremely tough. It was hard to not be able to communicate with him. It was hard to not hear his voice, or see his eyes. He wasn't in a coma, he was sedated, but it felt that way..if that makes sense. He still had a cough, so when he coughed his whole body would shake.
The doctors and nurses told us to keep talking to him. I talked to him a lot. I told him how crazy I am about him, how much I love him, all the little things I love about him. I told him that there are so many people praying and fasting for him. I prayed with him. I held his hand and kissed his cheek. I told him how strong he is and to keep on fighting. My parents came down that day. Josh's parents and grandparents were also here. We all spent time holding his hand and talking to him. There were many tears that day. We cried, hugged, and prayed.
We know there are so many who have prayed and fasted for Josh and for us. We are humbled and more grateful than we know how to express. Those prayers have truly been felt. We believe in miracles. We have felt so much love and compassion.

The doctors told us they are going to start treating him for a very rare disease called HLH. He has been a mystery for many months, with his high fevers and every blood culture coming back negative. They feel that this is because of the HLH. HLH is blood disease where his own cells are fighting each other. They started him on that day (Tuesday the 3rd) on his new chemo and steroids. This will be a 9 week program of intense chemo. Steroids everyday and chemo twice a week. It is in 2 week increments and then they slowly decrease the chemo. He will also do 4 more chemo through the spine. This should help his vision. If this 9 weeks of chemo doesn't work, then they have other meds, but we are praying very hard that this will work. He will also have to have a bone marrow transplant at the end of the chemo. He will have to do it through a donor because his body would reject his own stem cells. They will start testing his siblings within the week.


Wednesday, January 4th
 Wednesday was a better day. I stayed in a hotel on Tuesday night with my mom. My dad stayed at the hospital with Josh, so Dan could get some rest. That morning I work up completely exhausted. Both emotionally and physically. I had a hard time moving. My mom got up early to go to the hospital to get my dad for breakfast, but I was too beat up to get out of bed.
Well my mom came back to the hotel, I was still in bed. She told me this story...
The doctors had slightly lowered Josh's sedation medication to see how he would do. My mom was holding his hand and hoping to get some response. She wasn't getting anything until she told him she was going to get Megan (me), then he squeezed her hand tight!!
When she told me that story I hopped right up!! It got me right out of bed! I even did a happy dance!! I had a burst of energy! I was ready to see my man! I got ready fast and as soon as we pulled into that parking garage, I hurried as quick as I could to go to that boy!!
When I got in there I held his hand and told him the story about my happy dance and I even got a smile! It was the only smile I got out of him all day. I sat in there and talked to him and kissed him and held his hand and got quite a bit of response! He would squeeze my hand and try to open his eyes a bit! I rested my body on his lap to hug him and he even gave my back a little tiny rub.
The ventilator and other tubes were bugging him. They had his hands tied down so he wouldn't mess with stuff and he didn't like that. We had to keep reminding him where he was, that he was safe, that he had a tube in his throat, and that his hands were tied so he wouldn't pull anything out. He was still heavily sedated.
I was giddy that day! It was such a unifying experience to be the person he would respond to. As Cindy and I drove to the hotel that night, I told her that Josh mad my heart skip a beat that day.

Thursday afternoon at 4:30 they took out the ventilator! We all cheered when we heard his voice for the first time! It was the sweetest sound I've ever heard! He was definitely drugged up and saying all sorts of crazy things. The first thing out of his mouth was, "Where's my number one?" We all laughed not knowing what he was talking about. Cindy pushes me forward and said, "She's right here!" He looked right past me and said, "Are you going to backfill that?" We all were like, "What is he talking about?" Dan just laughed and said, "He's doing construction!" haha
The rest of the night he was saying all sorts of crazy things! Cindy and I had to put our faces in the couch and just laugh!

Each day he has taken baby steps. He's had a few scares with his breathing. There were a few points where they were thinking of putting him back on the ventilator. When these scares happen they put him on a breathing, pressurized face mask. The pressure opens up his lungs and it assists his breathing. Because of these scares he's had with his breathing, they put him on this breather at night. During the day he's on a smaller oxygen mask.
He has been given many beautiful priesthood blessings from his dad, my dad, his grandpa and Jed. We know that he has received many miracles.

Each day he is making baby steps with his progress. Some days is it 2 steps forward, 1 step back. He is very weak. He is still getting high fevers. His blood pressure and breathing is looking better. He is able to sit in the chair during the day now, and that is big progress. They helped him stand up one day and the next they are slowly starting to walk with him. He works with a physical therapist each day. He is still in the ICU. The doctors are all working very hard for Josh. 

Brushing his teeth on his own was a big step!

Sitting all day was a really big step!


It seems like at night time is when he feels sicker. He gets high fevers, coughing, and no sleep. He's had very little sleep since he's been here.

Inch by inch we will take any progress. We are learning about patience. We are learning about faith. We are learning about compassion. We are learning about love.

Life is precious.

Everyday is a gift.