Monday, April 7, 2014
THis is going to be the hardest post I will ever have to write in this entire world. I don't even know how we got here or why. Its been 2 years since I last posted. So much has changed in 2 years. Jon turned 6, Leah 4 and James just turned 2 a month ago. They have all grown, been healthy and happy for the last couple years. Jon started therapeutic riding at a new place and loved it. We did another round of HBOT. Went on many trips including a cruise, which Jon enjoyed but not so much the heat. Jon was approved for his eye gaze which he totally rocked on! HE was so smart and such a super star. ALways so happy and LOVED being around his sister. Leah continued to help with Jon by reading with him, letting him lick her ice cream, singing with him, and playing with him. THe best of friends! I would say forever and always they will be the bestest of friends. This past September 2013 Jon started having "pain." This pain was sporadic and sometimes he would get into this backwards c position. By November we were seeing it often. Jon couldn't even sit in his carseat the pain was so bad. We started seeing his pm&r doctor first we started him on valium to which it helped some he wasn't crying anymore but was still not himself and in this backward position. Then the valium was just wearing off and we had to increase it. By christmas Jon was just not his happy self we would have bad days and worse days. We were seeing his dr once a week. Trialed artane for a couple weeks to no changes so that was dropped. We planned a trip to Disney, Jon's favorite place in the world the end of January. We flew and Jon was miserable the whole flight. Once we got to our condo he seemed to turn a little bit of a corner. We seen a smile, a smile we haven't seen in a long while. He still couldn't sit in the carseat as this caused him such pain. We went to Magic Kingdom and I seen the look on his face and said to myself this isn't our Jon what is happening to him, why can't anyone figure this out. I want his beautiful smile back, his laugh, his happiness. I watched as he watched Leah greet the princess and as she ran to him and said "Jon want to see the princesses too?" He would smile for her but he was in pain but he was trying to hide it from her from all of us but I knew, I seen it and it broke my heart like nothing else. We got back home and I texted Jon's dr and told her we need to fix him this isn't fair. We went in to see her and she thought he had a hip pop out of socket. And for the first time I felt o.k because if this is what was causing this pain then lets fix it and get our Jon back! Justin and I went to the orthopedic surgeon and they took an X-ray and they said it might be a hair out of line but nothing that would be causing this sort of pain. So another knock down another "I don't know what could be doing this" another tug at my heart because I can't figure it out. I ALWAYS with God's help could figure out what was hurting, bothering, stressing Jon out WHY NOT THIS TIME?!?!?! WHy couldn't I figure this out? I have always stayed up late 1,2,3am researching for the next big breakthrough with CP, new therapies, new alternative ways to help him and now I would sit and research his symptoms and anything that would pop in my head. Jon normally was a healthy kid he got minor colds but never the need for prescriptions or hospital stays (2012 he was in the hospital for rsv. He was there for 3 days needing a little o2 and meds). His pediatrician would often say whatever we are doing we are doing right because a child with a compromised immune system and a sister that goes to school we would normally be in the hospital or at least on different medications for whatever germs Leah brought home. SO this time I was truly stumped. On Febuary 14th 2014 Jon was having this severe pain with this weird breathing he started doing about a month before that would last just a little while and go away. I gave him valium 5mls nothing happened. THen gave motrin a couple hours later he started shaking and I was saying Jon, Jon and when he stopped shaking he was out of it. I texted his pm&r doctor and let her know what was going on. I gave 5 more ml's of valium, nothing. at 7am his pm&r doctor called she said she was calling the hospital and to be prepared to stay so they could run tests. I got Jon into the carseat which he cried so hard and had that awful breathing. Walked through the doors and they seen him took us back immediately. It all seems like it just happened yesterday. I heard someone yell, he is having a seizure we need to intubate him! Someone else came over and yelled we need to knock him out what should we give him. I was crying hysterically watching them poke and prod my baby. At one point I heard them yell "we are losing him" I thought those were the worst words I have ever heard but it wasn't. They got him intubated. Did a cat scan and mri then told me they were admitting him to the icu. HE was so drugged up he was sleeping but he looked so comfortable. One of the nurses took a warm wash cloth and washed his face and got all the yuckies off his face. then she gently caressed his hair and said "you're all clean little buddy now just get better" and I cried because thats all we were suppose to be there for for him to get better! They had him on valium, fentynal and xanax. They ordered an eeg, an ultrasound and X-rays to which all came back normal. They did blood work and swabs to which came back positive for strep and pneumonia. They put him on antibiotics. They told me 2 days later they were going to wean him from the medications and then extubate him. They successfully extubated him and he had his eyes opened but still not really with it. Jon then started the twitching and breathing again. The doctors wanted to try other medications to see if we could control it. I don't even remember the meds but they tried one and after 5 hours there was no difference. They tried another and again we had to wait till its peak and still nothing changed. Jon was in so much pain, crying and twitching I could only hold him and rub his head and tell him how sorry I was. At that moment I felt like a complete failure. How could a mother not figure out why their baby was hurting, how do I just sit and hold my baby who is crying out for help and all I can do is rock and repeatedly say "I am so sorry" After 26 long hours and many trials they reintubated him and put him back on all the medications. Again he was sleeping but comfortable. The dr wanted to do a bone scan were they check his skeletal systems and see if there is any hair line fractures that might be causing this. We had pediatric and adult pm&r doctors coming in, neurologists coming in both saying it was the other that was causing it, neuro would say its because of his muscles and pm&r would say no way muscles don't just do that especially in a kid who's tone was always managed well so it must be something in the brain. we then trailed dantrolene but they said it could take up to a week to see results but after a few days we should see something if it was going to do anything at all. The bone scan came back normal. I asked them to check his micro nutrients (acids, vitamins and minerals) since I make all his food maybe I was lacking something. THey agreed but said they had to send it out to get tested since hospitals normally don't check those and it would take a couple days to get the results back. They wanted him to rest a little longer this time until they tried extubating. After being there for a week they re swabbed for the pneumonia and strep to which both came back negative. They were ready to extubate and did successfully. They started weaning the medications more and more. There was a point that the nurse asked Jon "do you want a popsicle" Jon stuck out his tongue. I was so excited a glimpse of him responding was such a relief. He licked the popsicle then got a sponge bath. the dr.'s then had p.t come up and do some stretches with him. They were talking about moving us on the regular floor. Finally a step in the right direction. Jon was still on some pretty hefty amounts of medication so he slept a lot. Lisa was our nurse that day and she was one of the best nurse that we connected with and she was awesome with Jon. Lisa told me I needed to hold him. It was 3 days without holding him so I was ready. I held him and looked at him, so perfect, so soft my baby. Then he started twitching and having difficulty breathing. We put him back on the bed and I started crying. They couldn't get him comfortable they brought the crash cart in and a nurse was trying to get me out of the room as they were using blow by oxygen. They intubated him again and got him back up on the medications. After that they told me that Justin and I needed to talk with the palliative care people. Where was this going? Why did we need to talk with them? Jon was once again comfortable. The next day palliative care and our dr went to a room to discuss things. One thing was brought up about a tracheotomy and the doctor said it wouldn't work as where Jon was clamping down is above where the trach would be so it would be useless. I then told them to take him off ALL the medications he was on and to start him on new ones. COuld the meds be adding to the symptoms? They said they would have to think about that one since those are the meds most frequently used. The next day they came up with a plan. THey would slowly decrease the other meds and add the new ones. The new meds would be Ketamine, Phenabarbital and epinephrine. THey then wanted to do another eeg, an overnight one. THe eeg came back normal so they told us Jon is not having seizures and these symptoms are like tremors. They got Jon on the new meds and off the others then wanted to again extubate him. This time they extubated him but it only last a couple hours and he needed to be intubated again. They were also having to suction him more frequently which they said was not normal because he wasn't even getting suctioned that much when he had the strep and pneumonia. Then the nurse said we should bring Leah up. To which Justin and I said no. We then thought about it and said it was a good idea since she has been asking about him everyday. She was even at the point of making herself sick so she would need to go to the hospital. So the next day I brought Leah up and the team there took her and explained some of the things she would see. They also gave her a toy medical kit and a stuffed kitty she could work on. Then she came in to see Jon. He was sleeping. She got up on the bed and said "hi Jon. I love you" Then she wanted to work on us including the nurses. One of the nurses asked Leah "Is this your big brother" to which she responded "no, he's my best best friend" She then kissed Jon and papa took her home. That evening they called and said they had to increase the meds as he was twitching even on the ventilator. I went back the next morning and the palliative care people talked with us. They said something( I was already crying so I couldn't really hear) along the lines of he is not getting better and that the doses of medications he is on he should be resting and whatever these tremor like symptoms are are getting worse and the need for more medication is not a good sign. The nurse then suggested I have Jons foot prints done. I knew what they were trying to tell us but I just couldn't believe it. Why, why us? Why did we only get 6 years with him? Why does he have to die?!?!?! The results from the micro nutrients came back normal. Actually the dietician and dr came in to tell us that his levels were near perfect. And that kids on hospital formula (the so called perfect nutrition) don't have this great of levels. It just confirmed that all the late night researching nutrition was well worth it. On Febuary 25th Jon was on such high amounts of medication and they were even giving shots of fentynal via i.v to stop the twitching. My dad, Justin, myself and brother were there. My dad went to get my mom. That night Justin went to pick up James and take him home but was coming back up in the morning. My mom, dad, brother and myself would take turns laying next to him. We would talk to him. Tell him what an awesome boy he was. How happy he made us. How he and Preston made me a mommy. How so badly I wish I could fix it and take him home. What an awesome big brother he was. What a difference he made in people, in the world, in ME. THe next morning to my surprise Lisa was on. She told me I needed to hold him to which I said no way the last time I did he started twitching. She said I promise he won't do that this time. I told her not just yet I wasn't ready. My brother went down to get a little sleep and mom and dad went to go get breakfast. Justin was on his way up. It was just Jon and I. I think I told him I loved him a million billion times and kissed his hand, head, and neck over and over. I then called Lisa in and said I need to hold him. I sat in his bed and she laid him in my arms. I cried uncontrollably. My baby, my little boy, my super star was laying in my arms again. I missed his warmth and his skin against mine. Lisa left. I started telling Jon everything I ever wanted to tell him. How incredibly happy he made me. How I would trade him places if I could, the dreams I had for him, the man he was going to become. I then said some of the hardest words ever spoken out of my mouth. I told Jon that I was going to be o.k, daddy, Leah and James would be o.k and papa would be o.k. That he didn't have to fight anymore. THat he could go be with his brother and Jesus. THat this new body he will have he would be able to run, skip and hop. THat he would have a voice to talk, yell and sing with. That we will all miss him so so much and I will never stop missing him but that he didn't need to keep fighting. After I spoke those words Jon took a big breath and he passed away in my arms. I screamed for Lisa she came in and called the dr. The dr came in and said the worst words I have ever heard, "he's gone" WIthin 10 minutes my mom, dad and Justin were there. Jonathan I will always love you. You were my heart. You were my everything! Everyday I miss you and long to see you again. Love you forever, love you for always as long as I am living my baby you will be!!! Love you Jon and until we meet again.