Update on Conner: 9/9/15

as some of you know Conner was airlifted to his main hospital four hours from home. On August 11th. His pediatrician found a collection of fluid behind his pace maker (that he had placed back in December 2014). His skin around the incision site had healed but then began looking infected with a red swollen look around it. We were concerned already from the skin irritation but even more so when fluid was found. So he immediately was flown away.

After ultrasounds, X-rays and blood tests, the doctors decided to start Conner on a big treatment plan of a couple of different antibiotics via IV. He later received a PICC line because of so much use of the IV. The plan was to keep him on IV antibiotics for a 6 week course and no chance of going home. The infectious disease team have a very difficult time knowing for sure if that fluid collection is an infection, sadly there isn’t a real way to tell besides the fact that his skin was very red and irritated. Also his CRP levels were high (checks the inflammation in the body, very non specific). 

To add to everything, Conners seizures were completely out of control! He was seizing every 10-15 minutes and given his versed (seizure rescue med via nasal spray) multiple times a day. We decided since he is already in the hospital why not try the keto diet (special seizure diet, LOOK IT UP). It has worked wonders already. After weaning him on to it (over a 3 day course) we already saw improvement. He was 9 days completely seizure free. 

After a few weeks of antibiotics his irritated skin cleared up but left a scar. The repeated ultrasound showed less fluid collection. It went from 3.5mm at beginning of admission to 1mm after 3 1/2 weeks. But weirdly, after everything began looking better, Conners CRP levels (inflammation blood test) came back higher and higher and higher. 

We feel as if we are on an episode of “House”. None of this makes sense. Everything is looking better, but he is obviously inflamed somewhere inside his body. The nurses and doctors always remind me “Conner is more complicated than most kids”. Isn’t that the truth. Tuberous Sclerosis stinks! 

Conner has been on the Keto Diet now for about 2 weeks and it’s going great. He has had a few break through seizures (very small partial seizures). I’m just so grateful for this diet. Conner feels great and he can finally be himself!

Conner is admitted to one of the best hospitals on the west coast. Somehow though we still can’t figure out what is wrong. We are on day 27 of 42 for his antibiotics course but now that this inflammation thing has become a problem, Infectious Disease team won’t want to send him home with his CRP level so high. Looks like we are staying here forever… 

 

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Delivery food to the hospital?

“My carrots taste like plastic…” Yes, those words have flowed from my mouth. Yuck. There is nothing worse than being stuck in a hospital and even worse when its your child’s admission. Completely speaking from experience (I am in the hospital with my son as I am typing this). You have to take care of yourself in order to take care of others. It’s hard to feel at home in a hospital but there are ways to make you feel more comfortable. I don’t know about you but good food that warms my belly, warms my heart.

I recently discovered an app called EAT24. Available via App Store. This app is amazing! If you don’t believe me go download it right now, and see for yourself. It’s free, and you can type in what you are craving. The customer service is amazing. If my food hasn’t arrived or I have a question, you can quickly ask via chat window and a very friendly person will help you.

I actually pay around the same amount I would if I were buying food in the hospital cafeteria, for food that is gross and repetitive.

Here are the steps ( to make it easier for you, because I care lol)

1. Download EAT24 from App Store

2. Make sure your privacy setting let the app find your location ( or manually type it in)

3. Select which restaurant you want to order from, then select delivery

4. Once you click check out, a window will pop up showing what you are about to order. At the top there is a box you can type in. This is what my message says “Once in lobby, please call 555-555-5555 and I will come down to you.” Usually delivery guys can’t come straight to the room. So it’s best to give them those instruction, just make sure your cell phone volume is up…(I learned the hard way lol)

5. You can choose your method of pay. Debit/Credit, PayPal, or cash.

6. Once you submit your order, you can click “check order status” and it will show a timer so you know how soon your food should be coming.

7. If for some reason things are taking longer than they should, click the button under the timer that says “ message EAT 24” and someone can check on it for you.

Hope I have helped your stay at your “Home away from home” just a tad more comfortable! Enjoy…

  

“How to be a HAPPY special needs parent”

Working as a team.

1. My husband and I came up with a genius sleep schedule, and may not work for everybody, but to keep everyone happy (including Mommy) sleep is important. Since I am a stay at home mom I get up during the week days at night whenever Conner is having seizures, or whatever the issue is. On the weekends my husband takes over Friday and Saturday night. I use ear plugs to have a quiet peaceful sleep and even though it’s only two nights, it does make a huge difference!
2. Stop keeping count of who last did what. My husband and I have done this a lot in the past. “Babe, can you please give Conner his medicine?” “But I fed him all night I thought you would do it.” “But I have to take a shower and get ready to take him to the doctor” STOP IT! All that matters is, is you are each equally contributing to your child’s needs. This will save a lot of arguments! 😉 If you know something needs to be done, why not buck up and just get it done if you can.
3. Having disagreements when it comes to your child is only natural, but its best to express your opinion lovingly. When Joel and I were new special needs parents, Joel thought I was over reacting every time Conner did something weird. I sat him down and told him WHY I did this. I explained to him that the constant worry I was experiencing was taking its toll, and the only way I could cope was to make sure I did my very best at being in tune with Conner and if I was over reacting, I felt that it was better to be safe than sorry. After a while Joel saw that sometimes if I hadn’t been worried about it, things could have taking a turn for the worst. I don’t mean the wife is always right, sometimes the father can be right too lol, there have been lots of times when Joel had to explain how he felt about a situation. Give each other a chance to speak up, but never belittle each other in front of family, friends, or medical staff. Stay on the same page as much as possible. Come up with a plan for each situation that may arise. It will help things go smoother. That I promise!

Say no! Those of you that know me…you are going to think “Huh, she should listen to her own advice!” This is so true, but I have learned that when I say “No” to extra things I know I am doing myself a favor. I love helping people out because it helps me get my mind off of my own stress, and I know people appreciate the help! There are times though I say “Yes” too often and I end up becoming overwhelmed. So on top of taking care of my special needs son, my 4 year old daughter, being a wife, and a busy Christian (Jehovah’s Witness), I choose to put too much on myself and I just crumble under the pressure. DON’T DO THIS TO YOURSELF. Know your limits. Your friends and family will understand…

Beautiful inside and out. To begin with, being a special needs parent automatically makes you beautiful inside. What about outside? I’m not talking perfection here… BUT! Have you noticed when you put extra effort towards your hair and makeup it actually benefits you more than others? (Of course, I am doing everyone a favor by putting my face on, otherwise I would be ran out of town with pitchforks lol) I have noticed whenever I take a few extra minutes on my makeup, I feel at least 2x better than if I don’t. There is nothing wrong with sweats, messy buns, and naked faces! I am all for that! Try dedicating more time tomorrow for getting ready and see how you feel.

Romance. Why is romance important? Well that should be obvious! See my other blog…http://onerummymother.com/2015/01/13/never-neglect-date-nights-again/

Quiet time. Of course you all know I am a HUGE Quiet time advocate! See my other blog….http://onerummymother.com/2015/01/21/mommy-needs-quiet-time/

Ask for help. Don’t ever be ashamed to ask for help. We all need help time to time. I couldn’t be a special needs mom without the help of my family, friends, and support groups. Knowing you have people there to help you will put your mind at ease. If you keep trying to take on the world alone, you will fall apart, but with support, your peeps will keep you strong when you most need it. Even when you don’t need them, just knowing they are there for you can be really comforting.

Night out with friends. I try to make this a monthly priority. For you special needs moms and dads, you have got to take time away from home to be with your friends, and try your best not talk about your kids. Though it may be hard because they consume every second of the day usually and love them so much, but having some normal conversations is healthy and it’s okay, don’t feel bad. Remember, if you aren’t happy then your kids won’t be happy. Make time for you and your friends to just hang out.

Online support group. Since my son was first hospitalized I connected with other parents online via Facebook, Inspire, etc… The support was at times overwhelming! I would post about a bad day and I would instantly have over 20 comments posted. All to encourage and to keep us going. At times, I know you agree, you don’t even answer your family’s phone calls. Somehow getting online is my favorite way of receiving support. Not that my family doesn’t give great support because they do, but accessing the internet and talking with other parents saves my voice from cracking and emotional break downs over the phone, which I avoid at all costs. LOL

Dedicated family time. Family time, I know, can seem rare because of all the stress from therapy, doctor appointments, just everyday life with a special needs child but just take a moment to clear your mind and ask yourself these questions “How can I be happy?” This is one of my favorite quotes “Happiness is letting go of what you think your life is supposed to be like and celebrating it for everything that it is”- Mandy hale. We get so caught up with our busy lives that we forget what life is all about. My favorite thing to do is just sit and watch my kids play on the floor. I always think to myself how much time flies. I have to gobble up all of this cuteness and enjoy time with my family. We shut the TV off, and our phones and just relax, and listen to your kids play. That is how I celebrate the life I have. I listen… Also see http://onerummymother.com/2015/01/20/how-to-find-happiness-after-life-hands-your-family-lemons/

What is a Mic-key button?!

In this video I explain what it is, why Conner got one, NG Tube vs. G Tube, what it looks like, how it works, and my input on it. I hope you find it helpful!! I hope what ever you choose works for your kiddo! 🙂
Click the link below to be directed to my vlog

What is a Mic-key button?

I hate seizures so much

Such a sad week, Conner’s seizures have become worse. He now is having 3-5, 1-2 minutes grand mals 70-100 infantile spasms a day. He desaturated during his grand mals, and is now foaming at the mouth with these ones. I haven’t needed to give him his emergency med yet but I can tell they are getting worse. It takes him quite a while to breath normal again afterwards. Please keep us in your prayers. We need as much strength as ever right now. Thanks everyone for keeping up with him through his page http://www.facebook.com/HopeforConner  He is so strong..

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Hospital Freebies!

WARNING: I will come off as a cheap skate in this article!

Since my son was born, we have been in the hospital too many times to count. Everyone of those times we came home with double the luggage. Conner (our son) has had issue after issue. Seizures, heart block, feeding tube surgery, pace maker surgery…lots of things, pretty minor. Usually the nurses ( the nice ones, lol) will send you home with plenty of supplies. I NEVER turn down freebies. I’m sorry but my child already is expensive, I would appreciate saving money where ever I can 🙂 Here is a list of freebies I have received from my sons hospital stays, and my uses for them. Enjoy!

– Gloves ( I use these to clean up puke, daily… yeah I hate life some days)
– Syringes ( I use daily for dispensing medicine )
– Extra feeding bags ( G-tube fed, you can never have enough! )
– Thermometer ( Always smart to have extras )
– Diapers and wipes ( No brainer… )
– Donated blanket or stuffed animal ( Cute )
– Comb ( To tease my own hair, LOL! )
– Lotion ( Just because )
– Aqua-for ( Conners lips are always chapped)
– Face masks ( Germ protection)
– Medical tape ( You never know)
– Gauze pads ( G tube site)
– Adhesive remover pads and spray
( Because corners biggest fear is bandages)
– Baby soap and lotion ( Just because)

5 seizure triggers you haven’t thought of…

5 seizure triggers you haven’t thought of…

Seizure: “A seizure is the physical findings or changes in behavior that occur after an episode of abnormal electrical activity in the brain. The term “seizure” is often used interchangeably with “convulsion.” Convulsions are when a person’s body shakes rapidly and uncontrollably.”

One in 26 people in the United States will develop epilepsy at some point in their lifetime.

Are there things that you can avoid for yourself or a loved one who suffers from seizures? YES!

1. Sounds.I have found that a lot of people complain of sudden, or loud sounds triggering a seizure. I know this is true because if things get too loud around my son he becomes overwhelmed and ends up having seizures. I resorted to buying my son headphone to block out sound. Here is the link to buy a pair for a child. This is the same pair Conner has that he wears every day. http://funandfunction.com/noise-reduction-ear-muff.html
2. Extreme temperatures have been made known to actually make seizures come on. We live in a valley and during the Summer it can become extremely hot. Some people have noticed that either very hot or very cold atmosphere can trigger seizures. Have you found this relatable? Maybe try to stay out of that crazy weather silly! J
3. Light Fixtures. Obviously the most common trigger you have heard or noticed is flashing lights, but did you know fluorescent lighting flashes so fast you can’t realize it but your eyes see it! You will find fluorescent lighting in a lot of stores and businesses. Obviously this is hard to avoid. We got our son special tinted glasses. The effectiveness of wearing a tinted lens depends on both the color of the lens as well as the intensity of the hue of the lens (and therefore the light transmission).  Several studies show that blue-tinted lenses may help reduce the photoparoxysmal response…thereby reducing the number of seizures.  Some patients and their doctors may not realize that this tint can be worn in a contact lens instead of in spectacle lenses. Have your ophthalmologist test your pupils with different shaded colors. Conner’s most effective color is brown/red.
4. Over Stimulation. Putting more stress on a person with epilepsy can cause seizures for sure. My son will most likely have autism, so he hates water. Whenever I give him a bath he gets stressed and seizes. He is G-tube fed, so whenever I try to feed him by mouth he gets nervous. I try to do everything calmly and slowly ease him into it. The key is to keep track of what triggers the seizures. Everyone is different.
5. Strong Scents. A year ago my son was relaxing and my daughter came into the living room and sprayed an air freshener. He instantly went into a grand mal seizure. From that point on we have been very careful to never have anything smelly around him. Sometimes it is unavoidable. People wear perfume, or you go into people’s homes and they have plug in’s on every wall…If you seem this may be I have found that if you MUST have smell good things around try essential oils. I have found that these all natural scent’s don’t affect our son! http://www.doterra.com/#/en/ourProducts/essentialOils/singleOils

Please share with me your thoughts and triggers you have found!

Get your doctor to listen to you!

How to make your child’s doctor listen to you!

1^st : VIDEO TAPE (If possible) what your child is doing.

For example, if you suspect any of the following, try your best to capture it on video.

Autistic features, seizure activity, pain, loss of coordination, or anything that is visual.

Bringing only your words to the table when the doctor asks, “What going on?” You might as well be walking into a courtroom without evidence! Keep a recording device on you at all times so it’s ready to go when you notice the change.

This is based on personal experience. When my son began having Infantile Spam’s. I brought him to his pediatrician, I told him what I was seeing. He said “Kids do funny things sometimes”. I knew he was wrong. So very wise advice was given to me by another TSC mom. “Video your son having his spasms” she said, and so I did. Doing this made the world of difference. We drove our son to the city and showed every doctor that came in to see him, the videos. As I thought, Conner was then admitted and diagnosed with Infantile Spasms. TRUST YOUR GUT!

2^nd : JOURNAL your heart out. Keeping a log of your child’s activity is important. When the doctor asks you “When did that begin?” “How often?” “How long does it last?” Questions like these can be referred back to your journal which makes it a whole lot easier. Instead of just sitting there and saying “Oh I don’t remember…” It is amazing how much they appreciate your seriousness of your child’s care. They respect your efforts so they know that you will be expecting the same effort from them!

3^rd : MEDICAL BINDER’s are very helpful. You can make your own or ask your resource center if there are programs that provide you one for free. Conner’s binder consists of Medication lists, dates of surgery, clinic notes, MRI and CT scan disks, and lots of other important information. I don’t know about you, but I hate being asked the same question a million times. My son’s binder has become my best friend. The first thing I do is hand them his binder. I hand it to his pediatrician, the ER nurses etc…All they have to do is make copies of what information they need to obtain.

4^th : RESEARCH. I know the internet can be scary and some of you may disagree with me, but I have found researching my son’s symptoms, extremely helpful. The stories you find of other parents could possibly save your child’s life. When Conner was on ACTH (Steroid for Infantile Spasms) it began making his tumors in his heart grow! Thought the big city hospital never heard of such a thing. I printed out what I found and brought it to their attention. They quickly ordered an ECHO, long and behold, I was right. They immediately stopped his medication. Who knows what would have happened if they didn’t believe me.

I hope you have found this helpful. Please contact me if you are having difficulties communicating with your doctor. Remember that the doctor will only be as polite as you are to them. So only be stern when you feel the need to be. Again…trust your gut, you are usually right. Yes some of us may be looked at as “Paranoid”, but my motto is, ”It’s better to be safe than sorry!”

Here is a link to a video I took of Conner’s weird symptoms. I already knew they were Infantile Spasms, the beginning diagnosis was Multifocal seizures but they transformed into IS a month later.

https://www.facebook.com/video.php?v=457172697667480&set=vb.431526783565405&type=3&theater#

What’s in my Special bag?

What’s in my Special bag?

– Stethoscope ( Conner has heart block and arrhythmia )
– Pulse ox ( not accurate enough but check oxygen level )
– 1 feeding bag ( Conner is G-tube fed )
– 1 formula box
– Thermometer
– Emergency meds ( For prolonged seizure )
– Extra syringe
– Wipes and diapers
– Feeding Extender
– Eye drops ( Conner get dry eye often )
– Glasses
– Head phone to block sound ( Sensory over stimulation )
– Emergency tube ( Incase Mic-key button comes out )
– Diaper sacks ( I am sure everyone loves the smell of their poo )
– Otoscope ( I use this all the time because Conner gets ear infections )
– 2×2 IV sponges for Mickey button ( To soak up tummy boogies, yuck )
– Orajel ( For teething, I love when my kids cry non stop, don’t you? )
– Drainage protector and catheter plug ( If Mic-key comes out it clogs emergency tube so stomach contents don’t leak out )

How to set up your kangaroo Joey junior feeding pump

Hey there care givers! I just happened to come across one of my old videos and I received over 12,000 views! Unfortunately I do not remember how to log in to that account, but I am going to post the link below and I hope you all find it helpful! Please comment if you have any questions or would like to add something I left out. http://youtu.be/qFsoYoSyNv8