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!

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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!

Assorted Nonsense

I guess the last few weeks haven’t really been filled with nonsense so much as the usual medical garbage that we deal with. After having to postpone John’s third round of chemo due to low platelets first and then low white blood cells the following week he finally started round three. Two days after taking the CCNU pills that he takes the first day of the round his head started swelling bad. He was walking around with an ice pack ace bandaged over his right eye and was taking tons of pain pills and steroids trying to get the pain to go away. His face broke out in a rash again as well. It was pretty clear at that point that he had definitely developed an allergy to the CCNU. We called the oncologist to let him know and he said okay just keep doing what you are doing until your next appointment, go ahead and continue with the treatment plan. The CCNU is only the one day of pills so we figured it was over at that point. Did I mention I had the worst stomach bug I think I’ve ever had and during that day so he was taking care of the girls while I was sleeping on Colby’s bed. Colby would lift his arm up and put it on my face when his cartoon was over, I’d wake up enough to get him another one and then I’d fall back asleep. It was a fun weekend.

The following week John goes  for his Vincristine infusion and that night he starts taking the Procarbazine pills. He is miserable. We figured he got the virus from me. What was really happening was his body was reacting to the Procarbazine. By the following Saturday he had broken out in hives. He was up all night. I finally convinced him Sunday morning (Mother’s Day) to go to the ER and get some Benadryl by IV because the Benadryl pills he was taking weren’t helping. He went in got the Benadryl, some IV steroids and an Epi shot. Convenient of him to not tell me his chest was starting to tighten wasn’t it. He said he didn’t want to worry me. UGH that man can drive me crazy some times! They finally sent him home and told him to call the oncologist in the morning. So he came home and felt much better.

Monday we talked with the doctor and his nurse and they want him to with the infusion he has scheduled for next Thursday since that one doesn’t seem to be causing him any problems. They’ve only ever had one other patient in the neuro clinic develop an allergy to the two pills he was taking. Everyone else has a hard time with the infusions. Figures right? We go back for his appointment on the 27th to see what the new plan is. The original goal was to do 6 rounds of this treatment knowing that they’d never had anyone complete more than 4 rounds. At this point he’s completed most of round 3. He didn’t take 5 nights of the 14 Procarbazine pill doses but he will finish with the last infusion.

Neither one of us is really sure how we feel about it at this point. The nurse thinks the doctor will want him to go back on the Temodar that he took his first time taking chemo. She seemed to think that was what he usually recommends if you can’t continue with the PCV therapy. John’s worried that by not completing at least four rounds that means the cancer will come back fast like it did last time. The PCV therapy in combination with the radiation he did this last time was shown to keep recurrence from happening longer than the Temodar therapy he did originally. That therapy should have kept the tumor away longer than it did the first time so who knows what will happen this time. We both try and stay optimistic but it can be hard when you can’t complete the therapy that had a better outlook.

During all of this cancer garbage all the kids had the stomach virus, Riley turned 7 and Colby turned 9. We had a joint Spider-Man/Hello Kitty birthday party for them. Colby was excited that two of his friends from school were able to come and another friend who couldn’t make it to the party came over earlier in the week and played for about an hour. He loved it. He never acts very interested in having friends over so we’ve never tried it before. It was fun to see him having fun with his buddies.  I love that Riley thinks it is fun to share a party with him and that she doesn’t complain about having boy stuff with her girl party.

Here’s some pictures from the party to end with.