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… 

 

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…

  

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..

.IMG_5043

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)

2015/01/img_0538.jpg

2015/01/img_0538-0.jpg

Conner’s Journey part 2

“Karissa…….Karissa….Wake up….” I slowly opened my blurry eyes. Focusing on the blonde woman in my face, I tried to make sense of where I was. “ Your son is doing well. He didn’t need any help. “ Then she disappeared. I felt like she was lying to me or I was dreaming. In walks my husband with our camera. I see for myself, a video of my son lying on a table, kicking his legs out and crying. He looked like a healthy normal baby. How could this be? Was it possible he didn’t need any help? I cried but still felt numb.

/home/wpcom/public_html/wp-content/blogs.dir/9ca/81061126/files/2015/01/img_0436.jpg

/home/wpcom/public_html/wp-content/blogs.dir/9ca/81061126/files/2015/01/img_0437.jpg

I was in complete shock. I made myself a video blog when my medication wore off a little. I spoke about how I was feeling and how Conner survived! I just kept thinking how much I wanted to hold my son. Because Conner was in the NICU and I was recovering from my emergency c section, which by far is more painful than a regular c section, we had to be apart. I was loaded with medication for the severe pain so everything is pretty foggy.

/home/wpcom/public_html/wp-content/blogs.dir/9ca/81061126/files/2015/01/img_0442.jpg

The next day my husband called my moms phone as she sat beside my bed. She let me know that I had a surprise coming. I had a feeling I knew what it was. I put on makeup incase there would be pictures. My husband walked around the curtain of my bed holding…what I thought was impossible…my son. The one who continued to kick every now and then reminding me “ Hi mommy, I’m still hanging on!”. He was so tiny, I had never been so scared to break something as I was then. I held him gently in my arms. Still numb to it all, I cried. I rocked him side to side regardless of the pain. He looked just like his big sister.

/home/wpcom/public_html/wp-content/blogs.dir/9ca/81061126/files/2015/01/img_0438.jpg

The nurses had made exceptions for Conner to leave the NICU since he was a miracle baby! That was the best surprise ever…I didn’t want them to take him away. He could only stay for a little bit. It had been sixteen hours since he was born. I hadn’t soaked him in enough…I needed more of my Conner. His sister Lacie got to meet him while he was in my arms. She didn’t know what to think. We didn’t prepare her for having a baby brother. We didn’t talk about him in front of her. I could tell she was a little put off.

We were asking to meet with the doctors in the NICU to discuss Conners MRI and genetic testing. They explained to us that Conner had numerous tumor’s through out his brain. They told us he had Tuberous Sclerosis Complex type 2. It didn’t come from either of us. He developed it totally on his own. Apparently it was just a freak thing. The doctor also mentioned that Conner would likely would have learning disabilities and seizures later in life.

As I held him in my arms, I starred down at his little head and couldn’t wrap my head around the fact that there were these awful little tumors inside of his brain! But for now, he was perfect in every way, and I decided I was going to enjoy every moment without the fear of his future.

Only four days later, we were ready to go home. I never imagined this moment would come. Hence, why I was totally unprepared. I didn’t bring a car seat, or anything. The hospital donated one to us! We were so grateful. Boy, did I have some shopping to do! We strapped Conners little body into that huge car seat. Joel was so scared to drive with Conner in the car. It was actually really cute.

Walking into our home with our son was surreal. I wanted to stay up forever and enjoy it all, but I was so tired, so we went straight to bed and Conner slept with me. The next day my mom brought a bassinet, clothes, diapers, and everything else we needed. I had a few things hidden away like a breast pump, a few outfits, and a bouncer. I placed the crib and swing out in the garage before his birth. I didn’t want to see anything that would make me sad when we came home without Conner.

I was so in love with my son, I felt on the clouds for weeks! Our friends from our Kingdom Hall came every night to drop off dinner, and friends would come clean my house and get groceries for us. We felt so loved and taken care of. My mom put together a last minute baby shower, which didn’t at all seem like a last minute thing. It was beautiful! We had about 80 people come. It was overwhelming how many came. We received everything we needed of course. Conner was 1 month old at the time. People came up to him and cried while he wrapped his little hand around their fingers. It was a very special day.

/home/wpcom/public_html/wp-content/blogs.dir/9ca/81061126/files/2015/01/img_0443.jpg

One month later EVERYTHING changed. Joel and Lacie went to meeting ( or as you would call it, a church service) Click here to find out what “Meeting” is http://www.jw.org/en/video-kingdom-hall/ I was home by myself with Conner. We were laying on my bed and all of a sudden a face changed and looked scared. His arms went up and his eyes began to roll. His whole body shivered. It lasted 15 seconds. I sat there crying trying to call Joel, he didn’t answer so my mom rushed over.

I knew he would have seizures but not so young! From that point on he had grand mal seizures every hour and the longest lasted almost 3 minutes. I was terrified. The doctor started him on a seizure medication called Keppra. It helped but it took a few weeks to figure out how much he would need to control them. Finally he only had 5 a day which was reasonable considering how many he was having before.

Conner began having infantile spasms at 7 months old. I was extremely depressed because Conner had forgotten how to laugh, smile, and babble. He even forgot how to eat. He would have over 200 individual infantile spasms a day and if he wasn’t seizing he was sleeping. He was never awake to eat, and he eventually became so weak to eat and forgot how, that he had to have G-tube surgery so he could eat. Infantile spasms have been his hardest challenge. Here is the link to his news video of that time. http://m.krcrtv.com/With-a-Total-of-19-Tumors-Everyday-is-a-Battle-for-Baby-Connor/18147000

From age 0-5 is when children develop the most. Conner has had so many seizures that obviously effected his milestones. He gained back smiling, and laughing after trying a bunch of different medications. Only some of them showed a slight improvement. He went 3 months without any seizures and he began to babble again! The seizure break happened completely on his own.

I thought this is it, he’s better! Then while shopping in Target one day, he was laying in the cart and had a cluster of 20 spasms. I called my mom and cried on the phone. Since then I knew things would never be stable. He would have small breaks and then begin having them again and again.

Conner is globally delayed. He is 2 ½ now and crawls a little, babbles, and laughs. He still has close to 100 spasms a day. Conner gets medicine 3 times a day. He recently had a pace maker put in because he developed 3rd degree heart block. He has healed up good, and it’s amazing to hear his heart so regular. He continued to have ECHO’s and halter monitors done after birth. He always had a crazy arrhythmia.

/home/wpcom/public_html/wp-content/blogs.dir/9ca/81061126/files/2015/01/img_0444.jpg

Our life has been so different since Conner came into our lives. I have flown with Conner too many times to count. The town we live in offers nothing to Conner. Anytime he is having problems he is airlifted to the city. Conner has made us a closer family. Of course we come across hard ships, but we always make it through. California offers so many great things to kids who have disabilities. Conner sees 5 different therapists! It really had made a huge difference.

I love my son exactly the way he is. I wish he didn’t have to suffer the way he does, but he is the bravest kid I have ever known. I know he will be my baby for life, but I’m okay with that! I’m glad I get to have my baby forever rather than not at all. He has humbled all of us including his sister. Lacie loves to take care of her brother. Of course, we have a hard time juggling attention between the two but we make it work. She is good at communicating and letting us know she needs us.

If you others are going through this or think you might be, I know this sounds cliché’, but you really are not alone. You have a huge group of parents to help you through. Including myself, please contact me if you have questions or need help. I will do my best… Things won’t be this way forever.

/home/wpcom/public_html/wp-content/blogs.dir/9ca/81061126/files/2015/01/img_0445.jpg