Bobby Carroll's Journal
Written Nov 19, 2013 5:47pmFirst off I would like to thank all of you who took time to read my entry on November 17th, your kind words mean so much to me! We as a family have an amazing support system. To the ones I yell and cry to, the ones that pray from far away, the ones who simply read because they care and the ones we have never met you are all such a blessing. I know that Bobby has touched many people and so many care about him, and to us that is remarkable. I am so glad that all of our readers have heard Bobby roar, Chad that made me smile. Thank you.
So November 17th is a day my subconscious will never forget and I did think of this date late last week and put it to the back of my mind. November 17th is the day that Bobby had brain surgery 3 years ago.
This year on November 17 and all of this past weekend I swear Bobby had it out for me just doing naughty little things but on the 17th I was frustrated, irritated and worried. Now looking back at the date I have a better understanding of why I was and am feeling so anxious and worried. Three years ago was the hardest surgery, they have all been hard but this brain surgery scared me so much, between unexplained low heart rates that we couldn't figure out to being put back in the ICU after being out on the floor and me just simply not understanding the brain. The heart is very complex, the eyes yes they are complex but the brain for some reason I have a hard time understanding the many things that it does.
I just wanted to get these thoughts out there before we head in for the EEG tomorrow, to maybe calm my mind. I have been so worried since November 17th. Isn't it crazy how we remember things but not fully remember them all at once, see again the mind confuses me lol.
I do have a good feeling about this appointment tomorrow, I may not want to hear what the results show or maybe I will. This appointment will also be something that we as a family will get through, we will support Bobby in every way that we can!
I was just reading on Bobby's appointment for tomorrow and I must have missed the part that he can only have 4-5 hours of sleep tonight and we have to wake him up 2 hours earlier then normal, he is going to be so tired and so is this mama. He can have milk in the morning so that will make him happy when he is up at 4.
I will update on how his appointment goes tomorrow or Thursday. We may not have the results tomorrow if I remember correctly our doctor said that he was going to be out and would call us with the results or schedule an appointment, fingers crossed that all goes smooth and well.
Lots of Love and Heart Hugs,
Written Nov 17, 2013 8:57pmAn electroencephalogram (EEG) is a painless procedure that uses small, flat metal discs (electrodes) attached to your scalp to detect electrical activity in your brain. Your brain cells communicate via electrical impulses and are active all the time, even when you're asleep. This activity shows up as wavy lines on an EEG recording.Bobby had a consult with a neurologist last Wednesday. At this appointment the doctor really watched Bobby and his behavior and disposition. Bobby was into everything and all over the place busy. The doctor decided to put Bobby on a med to help with his drooling, this has also gone through with Bobby's cardiologist due to this med raising the heart rate. It is on mail order and Bobby should be starting it this week. It isn't a complete fix for drooling but will help while he is taking it by drying out him mouth.
At this appointment we were asked why we were there. Besides being referred for the appointment. I told the doctor that we were there to make sure we were doing everything possible to help Bobby. With all of his delayments and not speaking.
I keep trying to tell myself that Bobby is behind due to 13 surgeries in 3 years and all of that healing time. It is getting harder and harder as he gets older and he isn't where we want or expected him to be. It is hard to grasp that there may be more going on with Bobby.
The doctor watched Bobby walk down the halls and you could just see the doctors wheels turning and judging Bobby, or more picking him apart, which is what the whole appointment was for, for them to see him and get there opinion. The hardest thing for me to go through and handle is someone judging my child. My mama bear wants to come out and pounce, I could feel my blood pressure rise......after about an hour and a half later the doctor requested some blood work and asked us to schedule an EEG.
Bobby had a blood test done to check his uric acid levels. These have been high in the past when we were doing genetic testing. We haven't gotten the blood test results back yet.
A high uric acid level, or hyperuricemia, is an excess of uric acid in your blood. Uric acid is produced during the breakdown of purine, a substance found in many foods. Once produced, uric acid is carried in your blood and passes through your kidneys, where most of it leaves your body when you urinate.
A high uric acid level may result in attacks of gout, but not everyone who has high uric acid gets gout, and not everyone with gout has high uric acid.
A high uric acid level can be caused when your body either produces too much uric acid or your kidneys don't eliminate uric acid rapidly enough.
A high uric acid level may cause increasingly frequent attacks of gout, or it may never cause problems. A high uric acid level may also cause some people to develop kidney stones or kidney failure. And some people with a high uric acid level also develop high blood pressure, heart disease or chronic kidney disease, but it's often unclear whether this is a direct cause or merely an early warning sign of these conditions.
Factors that may cause a high uric acid level in your blood include:
- Diuretic medications (water pills)
- Drinking too much alcohol
- Genetics (inherited tendencies)
- Hypothyroidism (underactive thyroid)
- Immune-suppressing drugs
- Niacin, or vitamin B-3
- Purine-rich diet — organ meat, game meat, anchovies, herring, gravy, dried beans, dried peas, mushrooms and other foods
- Renal insufficiency — inability of the kidneys to filter waste
- Tumor lysis syndrome — a rapid release of cells into the blood caused by certain cancers or by chemotherapy for those cancers
Also, you may be monitored for high uric acid levels when undergoing chemotherapy or radiation treatment for cancer.
Bobby will be having an EEG done on Wednesday, November 20th. We may not get the results from the doctor right away, he is going to be out of the office but said he would call with the results.
We will need to wake Bobby up 2 hours earlier then he normally wakes which is normally between 5 and 6 on a school morning so we will be between 3 and 4. They want Bobby sleep deprived for the test and then to fall asleep and wake all while being tested. The EEG can take about 2.5-3 hours and we have to be there at 7. This is going to be an exhausting day. A fasting child is always hard....and if Bobby doesn't eat mommy doesn't eat it is only fair. The neurologist gave us 2 answers the short answer is that we are doing everything that we can for Bobby and his well being the long answer is blood work and an EEG.
An EEG is one of the main diagnostic tests for epilepsy. An EEG may also play a role in diagnosing other brain disorders
An EEG can determine changes in brain activity that may be useful in diagnosing brain disorders, especially epilepsy. An EEG may be helpful to confirm, rule out or provide information that helps with management of the following disorders:
- Epilepsy or other seizure disorder
- Brain tumor
- Head injury
- Brain dysfunction that may have a variety of causes (encephalopathy)
- Inflammation of the brain (encephalitis)
- Sleep disorders
- Memory impairment
An EEG can't measure intelligence or detect mental illness. It may be used to confirm brain death in someone in a persistent coma.
My anxiety level for this appointment is through the roof right now, I am scared, nervous about what they are going to find. Will we get answers or is all that Bobby has gone through just how things were dealt. The neurologist did voice that he thinks that there is something going on, what that is we are unsure. We have done so many genetic tests on him and come up empty handed. Maybe this EEG will give light on other tests to do. I just don't know and it makes me sick not knowing what we are going to find. I always thing the worse before appointments it is just something I do to prepare myself for the worse then I am not disappointed in the outcome. I know it sounds crazy, but that is just how I deal with all things Bobby.
I have noticed since last Wednesday I have been watching Bobby, picking him apart. Trying to notice something, his habits just Bobby. I know it is always good to have information to give to the doctors but right now I feel like a terrible mother, I am overwhelmed and frustrated. I hate feeling like this. I just don't know, I feel like we are opening a new can of worms with Bobby and this is going to require a lot of tests and blood work and it scares me. He is my baby and I want what is best for him I just love him so much that it is hard to hear he isn't perfect but he is my perfect.
I will keep all of you posted on how this test goes and what the results are.
Please say a little prayer for our family and if you don't mind say a little extra one for my nerves :)
Lots of Love and Heart Hugs
Written Oct 28, 2013 10:12pmBobby had an MRI last week on the 17th.
Every year I dread MRI's Bobby is getting stronger and due to the MRI being a quick MRI they do not sedate. The lesser of two evils I lay on him and hold him down or they sedate for something that will only take a half hour. This time was really hard to keep him still and to calm him. MRI's are so loud and how do you explain to your child that you are holding down that things will be okay. Bobby did pretty well with, he cried but I got him to hold his head still without my hands being in the pictures. He gave me the most fierce hug while telling me off afterward. I ended up with a blood blister on my pinky from him squeezing so hard.
My mom and Madison came along to the appointment and we did a little shopping and had lunch before we met with his neuro surgeon assistant.
Bobby's results of the MRI were really good, his cyst appears to be smaller and his ventricles are healing nicely.
We did talk about Bobby and his being non verbal and what this means. We also talked about Bobby's balance. She will be taking our concerns to Bobby's surgeon.
Due to the type of MRI they do and what they are looking at it doesn't give them a full picture of the full anatomy of the brain. They look at what they operated on and how it is healing. From their aspect things look well. They are concerned of the non verbal and balance issues. We are being referred to neurology and they may want to do an extensive MRI to look into certain parts and how they are working. Bobby does not have a neurologist, we met with one pre brain surgery and haven't since then because Bobby's brain was healing well and with all that he has been through he will be behind. We along with his doctor just want to make sure we are doing all and everything that we possibly can to help Bobby in the best ways possible. We will also be referred to DPT doctor of physical therapy to get a full evaluation. This too is just to make sure Bobby is getting all of the support he needs to help him reach his goals. I am still waiting for these departments from Mayo to contact me to set up appointments for Bobby.
Bobby is doing great he had a pretty good fall onto some rocks about a month ago that left a nasty cut on his forehead that required an ER trip with getting it glued, it is still swollen. He didn't even cry, I didn't even know he was hurt until there was blood coming down his face, tough little thing!
Bobby is in school 5 mornings a week and seems to really enjoy it. He is learning so many things and has a great team working with him. Bobby also goes to daycare at the school for a few hours a day since I went back to work full-time at the school as well in the special ed department. I really enjoy it and still get time with the kids.
Sorry for such a long delay in entries. I will update you all more about our summer in the next entry.
Lots of Love and Heart Hugs