Hi everyone! How are you doing? Good I hope! I know I left you at a stand still if you actually read this blog on the last blog post. However I’ve had a really good reason. If you have been following my twitter (or you found me on facebook) you know what is going on to some degree. If not here is a story for you.
This past Monday (whatever date it was it’s Saturday for me today) I was told to take Jeremy to the hospital. I did. He got admitted and transferred to Rady’s Childrens in San Diego, CA. So far he has had 2 surgeries, a blood transfusion, and so many antibiotics. More then any normally healthy person would ever get in 5 life times. he has a few medical teams taking care of him here. The Ortho team, Infectious Disease team, Ped Team (pediatric doctors), his own personal surgeon (the surgeon who is working on Jeremy will 99% be the same one each surgery he needs for his current issue), and a few nurses who really like him. He will be on crutches for a very long time. He will need physical therapy for a very long time. He will need IV antibiotics at home for at least 6 weeks – he got his PICC line yesterday. He will need a nurse to visit him every day at home while he needs IV antibiotics at home.
So what was wrong with him? Well I would tell you but I don’t know if anyone would want to hear exactly what it is. I can tell you he had an infection NOT a sprain in his ankle. In 2 weeks time it worked so fast & ate a lot of his calf muscle. It even started eating his bone & for a few years (this is the longest time) he will be on restrictive activity until the bone is strong enough to not worry about breaks. If he is lucky he will continue to grow normally & not need surgery to fix his leg as he grows. He is rather tall for his age so they are hoping he won’t need that. But it started during a growth spurt so who knows.
I know some folks ask what they can do to help. If you want to really help here are 2 things you can do:
- Donate Blood. When Jeremy needed his transfusion Thursday we where lucky his blood type was common. Even if it was a rare type we would still be lucky as we are in San Diego. However there are areas not big like this that need blood – rare and common types. Go donate to make sure there is enough. You never know if you or someone you cant live without will need a transfusion so they wont die.
- Donate to the Ronald McDonald House. In the United States there is a foundation called Ronald McDonald House. Most childrens hospitals have access to one. They provide housing, meals, laundry services, showers, and other things for families that are displaced by a medical condition that requires children to be in the hospital for an extended period of time. Without this service I would have gone hungry this week. I probably also would not have been able to stay with Jeremy at all.
I can’t stay in the Ronald McDonald House housing because of what is going on with Jeremy (yes it is that bad). However still donate to them. They need all the money they can get. There is one very easy way to donate. Go to McDonalds. You don’t have to eat there if you don’t want to. Go put at least a penny in that silver box next to the register. If everyone did that they wouldn’t have to worry about funding as much as they do. Incase you don’t want to do that or ‘need’ a reason (in case you are that shallow) on July 1, 2013 they are having an event to collect donations called Day Of Change.
Side Note: If you want to specifically donate to the RMH that we are directly dealing with it is the one in San Diego.
Tuesday or Wednesday I will have an update again I hope. If there is any major change I will make a blog post about it.
In case you don’t follow me on twitter (or the feed in the footer isn’t updated/working) Jeremy won’t be seeing the Ortho until June 13, 2013 unless there is a new patient appointment someone cancels on. I explained he can’t go to school, the pain, the swelling, the heat from his leg when it swells, the inability to walk by himself (he must be holding on to something/someone), etc didn’t seem to matter. They are the only Ortho place that takes kids so we have to deal with it.
The coming Monday (or any day for that matter probably) if it is warm enough my Mom is bringing us over to her apartment complex and we’re going to get Jeremy into the pool there. He needs to move around. He is stuck in his bed or on the couch. I would be greatly surprised if he doesn’t end up with a butt cheek full of bed sores by the time this is all over. I am also worried about blood clots. That sort of stuff runs in both sides of the family (even though it doesn’t happen until the people are old & gray). I figure getting him into the pool to move around and do something besides sit and lay would be a good idea. The water will help him move without putting all his weight on his leg. He isn’t too thrilled about the idea but he knows he needs to do something else. He has even offered to do homework if I got some from his teacher.
Speaking of which. I guess it is state law kids in Special Day Class (Special Ed for those who don’t know) can’t participate in home studies, etc without an IEP meeting. So he’s missed 2 weeks already of school from this leg problem. He will miss the next 2 weeks of school as these are the last 2 weeks. The doctor note we got Tuesday said he can’t go to school until an Orth clears him. This means he will need to be cleared before he can even start the 6th grade. However I think he greatly likes the idea of no school for him.
Jeremy is 11 years old. I’ve been told he has PDDNOS only because he had a speech delay. He has never really felt pain. He cracked his head open when he was 6 or 7 – got 3 staples – and as soon as we got home he wanted to go out & play. He’s had ear infections for weeks without it even hurting him whereas with any other person it would have been making them hurt rather bad.
May 3 he went to bed as normal. He wasn’t feeling that great and he stayed home the following day. His ankle hurt but it wasnt effecting him. He was having his growing dreams that night (he flops around in bed & dreams out loud when he grows) I figured it was growing pains. It got worse the next day but there was no cause for concern as he could walk around & do things as normal. Not the first time his growing pains lasted a few days. Then Sunday he started having issues walking. I took notice obviously as this was some weird growing pains for him. Sunday night he could hardly walk. Monday morning I took him to our local hospital – Hemet Valley Medical Center. They took xrays only (no looking to see what had caused the pain) and wrapped his foot so his toes where pointing down. I know this is wrong. I took him home. He had a fever at the hospital of 99f. He got home and laid down on his bed. After he woke up and was up for a bit I took his temperature. It was 103.7f. I gave him tylenol and he went back to sleep. His fever broke. Later that night his fever was back up to 101f. It broke over night while he was sleeping. I took him to the county hospital – riverside County Reginal Medical Center. They said he had a sprang as well and put a split on his foot. We went home and he fell asleep. Next day he went to his Dads. He was there until Friday – today. he had accidents there and I had to take his splint off and give him a very hot sponge bath. He needs a shower but we are doing that as soon as he gets up. He has a fever now. Wednesday I tried to get his doctor to see him as the back of his leg was hot & very tight in one spot. She refused -giving me a note to excuse him from PE for the rest of the school year (3 weeks remain). I complained to our insurance company and now have a new doctor for him. I called to make an appointment for him and the nurse there said take him to Loma Linda Medical Center annex hospital in Murrieta as Loma Linda is an hour away.
I am waiting for him to wake up and be up a bit before I take his temperature. If he has one we are getting him a shower and we are going down to Murrieta (its south of where I live). I hope they figure this out. For him to feel pain all of a sudden like this and it not getting better there has to be something else going on. I hope it is not the start of something bigger that will effect him for years to come – or the rest of his life.