Botox Fun

Colby had his Botox and Phenol injections on Monday. We left the house at 6:30 in the morning and he was doing good. By the time we made it through all the traffic and made it to the hospital he had a fever. The doctor, nurse practitioner, anesthesiologist and I all decided to go ahead with the procedure. He hasn’t had any injections since last June because he’s been so sick. He was scheduled for them in October but that was when he was admitted for low potassium and sodium. Next up was the crazy random fevers for the rest of October, November and December brought Pneumonia and January was Influenza and 103 fevers for the rest of the month. February was his nissen surgery and collapsed lung. He really needed these shots because his muscles were so tight it was starting to affect his tendons and his hips.

Tuesday I kept him home because he was still running a slight fever and was not a very happy kid most of the day. By Tuesday afternoon it was gone and he was smiling again so off to school he went on Wednesday. John and I went and ran errands and worked around the house. It was nice to have a somewhat normal day. Thursday we were back to Salt Lake City for John’s dental appointment at the VA. Colby got to miss school again because we had to leave before the bus would have picked him up. He didn’t really mind. I almost took him to the doctor when we got back because he was wheezing really bad. I gave him an albuterol and pulmicort treatment and that helped a lot.

I think he just has a really bad cold or virus. I guess he’s going to be more prone to wheezing with respiratory stuff since his lung collapsed. One of these days this kid will feel better and stop keeping me up all night. He’s been up at least three times a night all week but more like four or five times most of the time. Tonight I’m going to bed early, I think I need it!

 

Nissen surgery

Colby, Colby, Colby. I love you buddy. We’ve had more than enough excitement in our lives, don’t you think? I took Colby down to Salt Lake City on Monday morning to have his Nissen Fundoplication. It’s a laparoscopic surgery that is fairly routine even in kids. Except when it isn’t.

During the procedure Colby’s left lung collapsed. The surgeon who has done several surgeries on Colby and knows his history fairly well came out to tell me how it went and led with this “In 1% of these procedures….” followed by a pause where I chimed in with “Bring it. What happened?” I knew it wasn’t life threatening or he wouldn’t have been talking to me in the parent waiting room so I figured it was safe to joke a little. It was. Colby had 7 incisions from the procedure and 1 from the chest tube he was lucky enough to have for 24 hours.

Chest tubes are not very fun. At least that’s what I was able to gather from Colby and his very uncomfortable night that night. Poor kid had a seizure, and lots of morphine. The chest tube was pulled the next day but not before the nurse practitioner made me really mad and argued with two surgeons that Colby should not be allowed to go home because she messed up the way the orders were written. That’s a very long story that I’m still trying to resolve.

We came home the next day and the last week was crazy painful for him. His intestines ground to a halt and I had to pull out some heavy duty laxatives before they decided to start back up yesterday. We missed church and I’m pretty sure that given the situation people are thankful we did.

Today a friend came over and worked on Colby with some energy work and taught me how to do some of it for him. He was laughing this afternoon and smiling again. There was a lot of trapped fear in that boy that was released today and he is so much happier. Have any of you ever done any energy work? I’d love to hear about it. I’m working on becoming Emotion Code certified and eventually Body Code certified. I’ve seen amazing things happen using these techniques and I’m excited about the journey I’m on.

Colby goes back to school tomorrow and I’m excited for a small break after the craziness of last week.

Labs, labs and more labs



Colby really does not want to go back to school! I on the other hand was so excited for him to go back tomorrow. Guess who is going to win tomorrow? The 103.1 fever does. Sigh. He hasn’t been to school since Dec 18th. One entire month! I know two weeks of that was vacation but this is getting ridiculous.

He has an ear infection. Ear infections do not cause 103.1 fevers. His blood work today shows anemia. Anemia does not cause 103.1 fevers. His urinalysis shows nothing. Nothing does not cause 103.1 fevers. Can anyone tell me what would cause a 103.1 fever? His doctor doesn’t know. Oh that ear infection is after a ten day course of antibiotic he finished yesterday. Doesn’t make any sense.

Tomorrow I will call his kidney doctor to have him look over his lab work. The protein in his urine has gone up again but his kidney panel labs look better. Go figure. Then I’ll call his neurologist to ask about a link between lamictal and not absorbing folate or something. I was talking with other parents about the link on a Facebook group over the weekend. She brought up testing for the MTHFR mutation. I asked his pediatrician about it today but he doesn’t think there is a reason to test for it yet. Frustrating!

I feel bad for Colby but he continues to be a trooper. Today at the lab he laughed when I asked him if I should pretend my arm was his arm to trick them. He screams in pain from stomach cramps after being on an antibiotic and when it is over he laughs. Almost like he’s saying “HA HA I worked through that you stupid cramp!” I took his temperature and said “Stupid fever, go away” He laughed. He felt miserable but he still laughs and smiles. He is the toughest person I know. Not just tough physically because he tolerates so much pain but emotionally tough as well. He could give up, but he doesn’t.

This week I was so anxious for him to go back to school. I’m tired, I felt like I needed a break. He’s been up five to eight times a night and instead of sleeping until sevenish in the morning he’s been up at 5:15 every day the last two weeks. The thing I have to remind myself is I can take a break if I have to but Colby doesn’t get that option. His body doesn’t give him a break ever unless I medicate him enough for him to get some relief by forcing him to take a nap. I hate doing that. I hate seeing him in pain. There’s not really a win in either situation so I try and balance it for him as best I can. So tonight I’m pulling it back together and we’ll get through another week of no school if that’s what Colby needs. I’m hoping tomorrow one of his doctors might have some more answers for us.


Pneumonia

This is how my Wednesday night went

 

It’s kind of how Sunday night went also. The last two weeks have pretty much been the same just at home and not in the ER. 101.5 to 102.9 fevers every day for two weeks with no clear answer. At first I felt like it was pneumonia but was told his lungs sounded great. So then I started second guessing myself and trying to figure out what else it could be.

He’s done this once before with one of his seizure meds so I decreased that a little bit. No seizures and for one whole day he was fever free. Tricky boy! Then it shot back up and stayed put.

Thursday the pediatrician asked the radiologist to read the film and it says Extensive Left Sided Pneumonia. So much for the ER doctor and the Respiratory guy reading the film and saying he looked fine the night before. Oh well, it’s figured out for now. He’s on an antibiotic and feeling better though he is grumpy today because he had a seizure this morning. I’m not ready to go back up on his seizure med right now so I’m just going to wait and see what he does for now.

The dumb thing about this pneumonia is that I think he aspirated during his pH study and that’s what caused this. I knew I didn’t want to do the study but it had to be done in order to go forward with the fundoplication nissen surgery. The study that was supposed to show how bad he refluxes. The study that showed he only refluxed fifteen times total in 24 hours which is well below normal. Yeah, that study. We’re meeting with a surgeon because even though the study didn’t show bad reflux he still throws up. His teeth are horrific. His gums are constantly inflamed and his esophagus is always bleeding. No matter how much I brush his teeth they will eventually fall apart with that much stomach acid covering them every day.

I’m really hoping this will help but we probably won’t do surgery until next year. Until then we’ll keep managing the throwing up the best we can. It’s not like he just started this, it’s been five years of daily vomiting. It would be nice to not have to cart around a backpack full of washcloths and changes of clothes.

Happy 7th Survivor Day Colby!

Colby's 2nd birthday

7 years!

Wow! It still sometimes hits me like a train that you had a stroke. Some memories of that day have faded. Most have not. Just thinking about the moment the doctor said “He’s had a stroke and is obviously a very sick little boy” still brings tears to my eyes and makes me nauseous. The memory of walking into the PICU and seeing you hooked up to a ventilator still makes my knees shake. Hearing the doctors say they didn’t know if you would live and that we needed to be prepared to make final preparations for you was not something I could even wrap my  mind around. We were told we’d know if you’d make it in 72 hours. After that they would be able to tell how bad the damage was.

Your little body was so puffy from the dialysis not working that you almost weren’t recognizable.  I knew you could hear me though so I sat and talked to you. I held your hand and told you that if you wanted to you could go and we would be okay but if you wanted to stay we would fight together to give you the best life we could.You chose to stay and every day no matter how hard a day it is I give thanks for that decision!

Colby holding Moms hand

You are the strongest spirit I know. You are stubborn and ornery and have a desire to be more than a little naughty at times but I love you even more for it! Your will to live and have fun has never wavered. I doubt myself everyday and think to myself that I am tired of fighting this battle called recovery but then I look at you and I know I’ll never give up trying to make your world a better place for you. Days and weeks like this past one where you have spent almost every waking moment either throwing up or screaming in pain from muscle spasms break my heart but then evenings like tonight when you are calm and laughing at the t.v. make up for it. Your smile and your silent belly laugh melt my heart every time.

We will continue to try every new medication that comes our way to make you more comfortable. Today we picked up a new seizure medication from the pharmacy. This morning was the longest seizure I’ve seen you have. I hate watching you stop breathing and turn blue while I count the seconds until you start again. Tomorrow we will start the process of weaning you off your old seizure med while starting the new one. It’s a dance we’ve danced many times in 7 years. We also got the go ahead to try a different type of muscle relaxer. This one works on your back instead of all your muscles. The rope of muscles down your back pulling you over makes my back ache for you. I’m guessing breathing is more important at this point than the muscle pain so we’ll do that change first before trying the second one. To many med changes at once gets confusing.

 

Speaking of dancing, I wish you were still small enough to two step with me. Your dad won’t dance but you used to love it. No music though just dancing in the kitchen to the beat of your own song. I hope that this next year of recovery brings you amazing progress but if we continue to baby step our way through it, it will be just perfect. I love you my brave little man!