Quite a scare!!

On Wednesday I picked the boys up from school as usual. Instead of Broc running out to meet me he was very slow and quite. He told me he was freezing cold and very tired. I was a little taken a back cause normally he is so crazy I have to stop him from bounding across the road. We went to pick up Mark and got in the car.

I asked how the boys day was and Mark told me all his news. Normally Broc cannot stop talking and Mark cannot get a word in edge wise. All Broc said was that he was so tired in computer lab that he only wrote 2 lines and then had to put his head down.

We got out the car at home and I felt the back of his neck as he was getting out the car.OH MY GOODNESS!!! the poor boy was burning up. I rushed inside the house and had him lay on the couch while I put all the bags inside and reach for the thermometer.

 He covered up with a blanket and was out. I took his temp.104F!!! Oh man panic mode set in. The last time he had a fever this high we were in the hospital for a week and then transferred by ambulance. I called the Drs office and they said bring him in immediately. I grabbed all I could and we ran out the door.By this time Broc could not walk and was barely responsive.

Anyone who saw him was very concerned. We are all so used to him bouncing off the walls and trying to control him. Dr Moustafa came in and took one look at him.He gave me the plan of action. First flu and strep both were negative. By this time Mark had met us there. Then off to the hospital for lab work and blood culture.

His labs came back very concerning so we all thought infection. Broc had dental work done last Friday. If he gets any bacteria in his blood stream it can go straight to his heart. We were all thinking endocharditus. He suggested we come back to his office to give him very strong antibiotic shots. They are very painful but much better than being admitted and being on IV meds. Dr Moustafa knows that we can handle Broc at home just as well. He was drinking so that was the main thing.

Wednesday night was rough but he did well. His fever Broc and then shot back up again. He woke up Thursday morning with little pin prick spots all over his face. I know what that is, petechiae. It can be very serious so panic mode again for everyone. Dr M sent us to the hospital to check Brocs platelets. They had dropped but not low enough to cause the petechiae all over his face. PHEW!!!!! Dr Moustafa thinks the reason is from his fast,extreme high fever. That is his bodies way of dealing with the stress from the fever and infection.

We saw Dr M again Thursday evening and he was very happy to see that Broc is improving. He still doesn't have all his energy back but his fever is much lower and staying low. Yesterday he became very nauseous and had lots of tummy pain so we will be checking him for C-Diff again too just to make sure that is not causing the infection in his body.

Fortunately his blood cultures are still negative which is a good thing it means that what ever infection he has it not a serious blood infection.

We are hoping that he will be better by Monday as there is only 2 weeks left of school and we have a very busy Summer ahead of us. Unfortunately it's not all fun it will involve flying, hospitals ,dr offices, procedures and IV's.

Thank you to everyone for all your love,prayers and support.

Some Updates on Buddy's & Mommy's appointments

I will do my update first as it is short and sweet ( I mean pretty). I had a short arm cast put on on Monday and have to wear it for 2 weeks.After that I will be doing some intense therapy to get the full range of motion back in my wrist. I have been using it a little too much as it is hurting tonight. Nothing a little pain med wont take care of.

Isn't it pretty? I figured how many times in your life do you wear a cast. I might as well make it a stylish one.

So Broc saw Neuro and Immuno this week. Neuro thinks he may be having migraines and that is causing his off balance ,excessive talking and many other things he does when he gets ill. She thinks the migraines are causing him not to focus well and just total confusion in his body. His system is a total mess when he is ill so it could be a possibility. She wants us to try and describe his headaches to me and show me where they hurt. We have a picture of his head and he has to point on the picture where he hurts.

Immuno was very surprised that Brocs illnesses have not let up at all and nothing has changed. Not sure why he was so surprised.... He drew all his immune levels ,anti body,and every vaxine anti body level to see if they are still the same or if they have dropped any. He also asked me to get all the bills we have gotten from the insurance when Broc has been ill. Which includes cost for CBC , Drs visit,

x- ray,and then hospital cost if he was admitted. He is hoping to make a case with the insurance to ask them to approve a 3 month trial of treatment vs the cost of Broc being ill several times a month. He is going to be meeting with the medical director of our insurance as this will be Brocs only hope. We are not certain that this will work but he wants to give it a try. If it doesn't work then we know that we have done everything we can. Prophylactic ABX are not an option for him due to his risk of c- diff.

He also has chronic drainage which we need to try and dry up as its causing him to be re-infected over and over.

Although I am not holding my breathe on this as we know its a long shot we are certainly going to hope he gets approved.

Here are a few pics from last weekend when we went to the Special Day Assembly.

Sitting on the bench at Bob Evans after breakfast.

Taking a walk during the lunch break.The boys love to come outside to see the fish.

Finally no C-Diff - but theres more....

Sorry I didn't get to update things have been crazy.So last Monday his throat culture came back negative again.The Drs are really confused about all of this.Fortunately his C-Diff came back negative but the poor guy is still having lasting effects from it.He gets tummy pain everytime he eats something and feels sick to his stomach a lot.His ped said that that could last a few months still until his gut gets back to normal.We have him on pro-biotics to help restore all teh good bacteria into his gut.

Since last Monday he developed a rash and another viral infection with a nasty cough. They tested him again yesterday for strep and he tested postive in the office so they sent away yet another culture.His ped thinks that since he never had any symptoms of strep i.e. no sore or red throat then he thinks that he is now a carrier.He is not contagious unless he is showing symptoms.So thankfully no antibiotics this time until the throat culture comes back.

Despite not feeling good and not eating well he is still gaining weight.Our Buddy is now 49lbs.He is so heavy to carry I am not sure what I am going to do when he has his leg surgery in June.We have a small wagon in the house so I think I will be pulling him in the wagon at home.Not sure what we will do if we go out.Haven't thought that far yet.

Mark thinks I should start lifting weights to carry Broc so he has set up his weight bench in the basement for me.I am not too sure about that???

Little Mark is doing so well in school.He picked up a book at home the other day and started reading.I got tears in my eyes listening to him sound out the words and read them.My baby is really growing up fast.His teacher said that he has moved up in the reading group too.We are so proud of him.We were doing Bible reading last night and he asked his dad if he could read a scripture.It took about 5 mins to read one verse but it was so sweet to hear.

Update to strep and C-Diff delema

So we re-tested C-Diff on Tuesday and it was negative.Poor Buddy is still having lots of tummy issues.Everytime he eats he gets lots of tummy pain.He was still running a fever so Friday we tested for strep and he was positive on 2 tests.

A culture has been sent to the lab as well as another test for C-Diff.In the meantime I.D. Dr has started him on Vanco and Augmentin.They also did an anti-body test for strep.On Monday we are hoping to get all these results back.If they all come back neg then we know that Broc is colonising the strep bacteria.

The first cure for that is to take out his tonsils which we have already done.The second is then to take a very long course of Clindamycin which Broc cannot take as it put him in the hospital with a very bad case of C-Diff.So once again the drs are at a loss.They are all waiting for Dr Nelson to see Broc and give us a dx so we can start treatment.They think that once he begins treatment to rebuild his immune system then everything will go away.Well that is what they hope will happen.

I will update again on Monday when we hopefully have some results.