More medication changes

I know I’ve been saying this a lot lately but is it really the end of November? I’ve sat down to write several blog posts over the weeks but monitors beeping kept interrupting or projects on the house needed to be done. Colby spent most of October with a 101 degree fever and a tremor in his right hand. He had good lab work, his chest x-rays didn’t show pneumonia. I was stumped. His pediatrician was stumped. Colby was miserable. I finally sat down with a calendar and all my apps that I use to track his seizures, his blood pressure and medication changes.

The fever didn’t start until I upped his seizure med to his final therapeutic dose and weaned him off his old seizure medication. Weird, right? I called the neurologist to find out her thoughts on it. I left her a message saying labs were good, x-rays were good and urinalysis was good so the only thing I was left with was medication related.  Nope, not the cause is what the nurse passed on to me. I explained that I could find no other explanation and that I was going to try and back him off the dose and see what happened. She said the doctor agreed to that plan but was sure it would do nothing. When it did nothing she wanted us to get a urinalysis done. Again I relayed the information that he’d just had a urinalysis that was clean. The “uhhhhhh, huuuuuhhhhmmmm, went on for a long time while she thought about that. She agreed that if he had just had a clean UA than it was quite possible that the medication was the cause.

Twelve hours after lowering his dose the fever was gone and twenty four hours later the tremoring was gone. I was convinced. If the tremor had stayed I think it would have been a fluke or some crazy long virus but because they both went away I was pretty convinced that was the source of the problem. So what happens when you lower a seizure medication from therapeutic dose? More seizures of course!

His longest seizure was three minutes. Do you know how long three minutes is during a seizure? It feels like forever! Up to this point his longest seizure was just under two minutes. I had a rescue medication when he first started having seizures but it was only good for three months. Three minutes is way too close to the five minute point of needing a rescue med for me! Luckily by this point his appointment with the neurologist was only a few days away.

The appointment went well. The doctor agreed that the medication had caused the fever and that he should not be on that dose anymore. We discussed the possibility that he might need low doses of his previous medication and a low dose of the current medication to control his seizures. For now that is what we are doing. No matter how many times I try to get him off of lots of medication Colby throws something else at me and needs another. I told Colby I didn’t think that was very funny at all and he laughed! Typical of him right?

It’s been two and a half weeks since he’s been on his current doses of both medications and so far so good. Hopefully it stays that way. This last week Colby and I went down to Primary’s and spent the night in the Rapid Treatment Unit or the RTU. He had a pH study done which means they stuck a probe down his nose for 24 hours. Every time he threw up or burped I had to record it on a little monitor attached to the probe. Neither one of us slept well for a variety of reasons and we were both so happy to be done the next day. I have not gotten the results of that study back yet but the radiologist that read his chest x-ray checking for the correct placement of the probe said he still has hazy lungs. It’s looking like he’s aspirating a lot more than anybody thinks he is. Hopefully the study will tell us what we need to know to make a decision on doing the stomach surgery or not.

A lot more happened this month but that is a post for another day. Did you know that when a water main two houses down from your house blows through the street it can cause your garbage disposal to blow all the gaskets out and cause crazy water leaks? It can. I’ll tell you more soon!

Our Adventures with Hypokalemia

Doesn't look sick

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Doesn't look sick
Hypokalemia is not a term I was familiar with until this last week. Hypokalemia is low levels of potassium. I don’t know if I ever mentioned that I was able to switch Colby’s formula in August from Compleat Pediatric a lovely formula that is supposed to be made from real food but is actually made up of mostly corn syrup to a new formula call Liquid Hope that is made of real food with no crazy additives and words you can’t spell let alone say. I was thrilled Tricare was going to pay for this as it’s pretty expensive. What does that have to do with potassium levels?

It appears that Hypokalemia occurs when there is not enough potassium in your diet but can also occur with large levels of vomiting. Colby vomits daily. Yes, daily. Somedays it’s only once or twice, most days around 5:00 he starts throwing up every ten to fifteen seconds until I give him his meds to go to sleep. That’s two hours of throwing up every night. He gets no food by mouth or even in his G tube so he’s basically throwing up stomach acid, then bile, then blood. Good times right? His GI doctor has said for the last seven years that he is to spastic for a nissen and she wouldn’t recommend it. The last time Colby saw her she changed her mind and decided he was now a candidate. We’ve been resisting the idea of getting a nissen for a long time but I think that we’ve finally reached the point where we need to have it done.

Back to the food issue. Compleat Pediatric has less potassium in it that Liquid Hope does. It is not natural potassium though so it is more bioavailable than natural potassium is. Weird right? I think it is. The combination of vomiting and switching from a synthetic potassium to a natural potassium caused Colby’s potassium levels to drop drastically within a month.  It started on Monday when we went back to the doctor for what we thought was pneumonia that wasn’t clearing up. The doctor ordered a chest x ray and blood tests. The x ray was clear. No sign of any pneumonia at all. At any time in the last two weeks! Now we needed to wait for his blood tests. His CBC came back normal but thankfully the doctor also ordered a metabolic panel. Wow were his electrolytes screwed up. Low sodium, low potassium. Fun stuff. He wanted me to take him back for another blood test that night and possibly be admitted to the hospital that night.

We went back and got more labs drawn. His levels came up .1 so the doctor felt that we could go home and run him on pedialyte all night and see if that brought his levels up to a more acceptable level. We did that and then went back for more labs the next morning. This time his levels dropped .5. Now he was in the dangerously low levels. He earned himself an admit to the local hospital. I took him in with a bag of stuff for overnight. The doctor ordered an EKG that showed he was going to be having heart problems quickly if this problem wasn’t corrected fast. John felt like it would be best for Colby to go down to the children’s hospital so after discussing it with pediatrician I agreed that’s where we should go.

EKG

It all sounds pretty straight forward but I was seriously stressing out. John was upset over the whole situation. I was upset that he was upset. I was stressed because so far other than high blood pressure we haven’t dealt with cardiac issues. I wasn’t home to get the girls to where they needed to go. John couldn’t find the stuff I needed him to pack. Let’s just say that by the time the ambulance crew was there to take us I was in full breakdown mode. Colby’s doctor handled my tears well. The two EMT’s were very patient while I tried to get everything straight and settled. It’s not often I break down but when I do it tends to happen at really inopportune times!

I got Colby his medicine and I figured he’d have a very nice comfortable trip down to the hospital. I on the other hand forgot that lately I’ve been getting motion sick in the car. Not cool when you are sitting sideways in the back of a very bumpy ambulance. I was worried about Colby throwing up instead I was the lucky winner of the throwing up contest. Tears, throwing up and being incredibly tired do not make me very happy camper.

ambulance ride

I think we got down there around 9:00 at night. The nurse got him hooked up to the monitors fairly quickly but did not put in an i.v.. About an hour later the resident came in to get his history. The really crazy part of the whole puzzle was that he had a fever of 101 degrees every day for the last two weeks. Fever is not typical with hypokalemia. He was also having stridor and an increased need for oxygen. The resident went and got the attending physician who was also stumped. They decided to go discuss things with the entire team and said they’d get back to us. Around midnight it was decided that he would go get another chest x ray to see if Monday’s x ray had missed something and he would also get an x ray of his esophagus. I watched the images as they came up on the screen. The chest x rays looked the same but I was shocked when I saw the one of his esophagus. There was clearly a narrowing of his esophagus. I didn’t know what it meant but I knew it was why he was having stridor.

I’m able to access Colby’s medical records online so I saw the radiologists read of his x ray before the doctors came back. Turns out Colby had croup the last two weeks. He doesn’t cough on his own so I never heard the bark. I’m quite familiar with croup. Jahnna had it a lot and my brothers also had it when they were younger. It never once crossed my mind that is what Colby had going on.  Finally around 2:00 in the morning the resident came back and said that they were going to give Colby some potassium into his feeding tube and they were going to order a consult with the ENT department in the morning.

The rest of the night went by in a blur. Three lab draws, vitals, all the usual fun of a hospital stay. I didn’t get much sleep but thankfully John got some. The next day Colby’s potassium had risen dramatically from dangerously low to the high side of normal. Crazy how fast it works. His heart rate slowed to normal levels, his EKG was normal, he was starting to breath easier. We waited for the ENT doctors to show up and they finally did. Basically they want to do a bronchoscope the next time he has anesthesia. Colby has been intubated over forty times in the last seven years and they feel that there might be scar tissue causing some of the narrowing. The croup had inflamed his esophagus to much to do it while he was there. They want to wait six weeks and then do the procedure. The ENT also said that based on his history he would recommend a nissen as soon as possible.

sleeping in the daytime

Colby was discharged late Wednesday night and we made it home around 1:00 in the morning. It was a very long three days that capped off a very long two weeks of trying to figure out what was going on with him. I now have to give him potassium and sodium supplements daily to keep his levels at the correct levels. He will have a follow up blood draw tomorrow and hopefully it will remain at a good level and things can calm down a little bit around here. That was our fun week, how was yours?

Alpha Omega Publications: 6th Grade Monarch General Science 1~ Review

authorize-index-logo

authorize-index-logo We were blessed to be able to be apart of the Alpha Omega Publications Promotion Team. I’ve never used Alpha Omega Publications products before but somehow it was always on my list to check out each year. This year due to buying a home it was doomed to be on my wish list once again for yet another year. When I got the invitation I was so happy! Jahnna was also when I showed her the programs available and the list of classes she could choose from. If you aren’t familiar with the AOP products available these include Monarch, Switched-On Schoolhouse, LIFEPAC, Horizons and The Weaver Curriculum. Due to the move I knew I didn’t want a physical product that I was sure would get lost in a box somewhere during the review period. Not good. The other criteria was to not have to install another program on her failing laptop. I wasn’t sure it would hold up for another school year so I needed something online. Turns out I was right to think that way. My old laptop that she had been using died about a week after the decision to go with Monarch which is the online program. It was a good call.

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Here is the general overview of the General Science 1 program from the website. “Learn at home or half-way around the world with Monarch General Science I. Accessible 24/7, this online Alpha Omega curriculum teaches human anatomy, earth science, and climate in an engaging online atmosphere. Your seventh grader will love using multimedia tools such as videos, games, and experiments to master his Monarch homeschool science lessons. Monarch homeschool subscriptions are for one child and last for 18 months beginning on the date of purchase.” I had not researched the Monarch program very much because I wasn’t sure I wanted an online curriculum for Jahnna until she was a little older. The start of middle school seemed like a good time to look into that more. Monarch comes as a full curriculum or individual courses. You can even do a family plan for up to 3 students for a fairly affordable monthly price if you can’t pay for it upfront. I was also excited to see that AOP offers a military discount of 30%. It was very easy to set up the class for Jahnna. I received an activation code in an email. I entered that in set up a parent account and then set up her account. I loved that I was able to choose the dates for classes and to learn that we have access for 18 months instead of just one year. That is particularly useful if you order a more advanced class than your child might be ready for.
JahnnaAOP
  Why do I mention a class that was more advanced than you had anticipated? Because, it’s exactly what we picked! Somehow in my mind I did not clue in that this was 7th grade science. Jahnna is in 6th grade. Plus we’ve never done a very formal type of schooling before. I’ve followed her lead interest wise and she has learned more about a variety of topics than I had ever anticipated. We have not focused on test taking or note taking at all. I’m not sure why except that when I was actually teaching high school I despised giving tests because I knew my administration would make me throw out all the grades anyway. My students could barely write their names on the paper so if they did that it was considered a major accomplishment. That is a long rant for another day but I know that test taking is an important skill and that Jahnna will more than likely go to college where she will need those skills. AOP has given us a structured setting to ease her into that type of schooling. I’m sure you can guess that while I don’t love that type of learning I do know it is the accepted type of learning in higher education so she does need to be ready for it. The content for her is appropriate but she is definitely not a test taker or a note taker. Due to the move I have not been as involved in her schooling the last month and a half as I would have like to be. Oh and Colby has had pneumonia for ten days so that takes up even more of my time than unpacking boxes. I went into the teacher side of the dashboard and was surprised at her grades on the tests and assignments she had completed. Let’s say they were less than stellar. I started asking her about it and going over some of the questions with her. It was obvious she knew the material, so what was going on with the questions? She said she gets confused and then starts changing her answers because she isn’t sure which one is the right one. Hmmm like mother like daughter I guess because I hate multiple choice questions as well. We talked about some strategies and options for her and I think the house is put together enough at this point that I can take a break each day to sit down with her and learn some test taking skills. Over all I don’t think the content of this course is to advanced for her. It’s a lack of testing and question answering skills that are more advanced than she is. I’ve decided to slow down her assignments by lengthening her school year. This will allow her more time to go over the questions and answers and be more comfortable with this type of format.
Monarch screenshot
I asked Jahnna what her thoughts were on the class and she agreed that she was enjoying it. She liked that she could change the theme on her dashboard. Right now it’s what you see in the above picture. It’s a sea turtle. I’m sure next week it will be something else. She did not like the testing but I think that’s something of a starting point for us. It has forced me to realize that she needs to learn some skills and I caught it early enough to have plenty of time to teach her before she really needs it down the road. Using a more structured curriculum has also shown Jahnna that there are different ways of learning and that just because she might not think something is important it might be needed further down the road in her education. I enjoy how simple this makes homeschooling for parents. Especially busy parents who are stressed, tired and slightly overwhelmed. Oh is that just me? Sigh. If that doesn’t describe you and I hope it doesn’t it still makes the parents portion simple. You set up the course. You can change the grading specifications of the course. You can even change what an A equals as well. If you only want things 95% and higher to be an A then you can set it to that. If you want your D to be a 25% to 69% you can set it for that as well. I’m not suggesting that you do it that way it’s just an example. I like that it is designed for the student to work independently. Obviously not quite as independently as Jahnna has been doing but I’m going to use the crazy busy excuse knowing that I’ll be able to focus more on helping her in the near future. I’ve been impressed with the content quality. The uses of different multimedia options available is fantastic. If your child is an audio learner they can listen to the lessons as they follow along with the text. A lot of thought and effort was put into this curriculum and I have to say that after being able to experience a class first hand, the cost is worth it. I recently spent $99 on a curriculum for a different subject that is so inferior to this curriculum I am literally kicking myself over it. I will not be making that mistake again. Another important thing for some families that I always like to point out is that this is a Christian curriculum. The Bible is used in this program and that can either be a plus or a minus for you depending on your beliefs. I appreciate that there is the option to use the King James version of the bible which some curriculums do not offer. Since it is what we use in our home we are able to keep things consistent. I am confident when I say that I can highly recommend the Monarch program for anyone interested in teaching their child some independence in their education. It will be a part of our schooling in the future.

$500 Sweet September Cash Giveaway

As promised here is the giveaway I told you about yesterday! It’s a big one and I hope one of my readers wins. I know that moving brings a lot of expenses so I wish I could win but since I can’t maybe one of you will.

Welcome to the $500 Sweet September Cash Giveaway!

We have joined forces with a fantastic group of bloggers to bring you this great giveaway. One lucky person will win $500 cash.


Enter to win $500 cash via PayPal.

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Ends at 11:59pm ET on September 16th, 2014.

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House Buying Adventures

Holy crud the last month flew by and drug on forever all at the same time! When that happens I’m always surprised when the month ends and I don’t feel like I’ve accomplished very much. We’ve done a lot but at the same time we’ve been in limbo. Typical with any kind of move I suppose but it’s been seven and a half years since we moved here and I forgot what it was like.

This is the first move since we’ve been married that I haven’t had a newborn or been 9 months pregnant so in some ways it feels easier. The last time we moved Colby hadn’t had a stroke so we didn’t have medical equipment and an entire cupboard full of medication. We sign the papers on the house tomorrow but the moving company hasn’t even done their walk through yet. That will come tomorrow evening. We had originally planned for them to come next week to pack us up and move us but maybe we’ll see if they can come sooner.

The big issue is once Colby’s equipment and medicine go, he and I have to sleep at the new house. I can’t have the movers pack up his stuff because he needs oxygen, his feeding pump, his food, his oxygen sensors to monitor his oxygen and heart rate. Tomorrow we figure out the best way to do all that and go from there.

The next few weeks will be a little crazy. I honestly think short moves are much more difficult than moving several states or even hundreds of miles. This is the second time I’ve moved a mile or less away and it’s always a challenge to figure out the best way to do things. I’m hoping that everything will go smoothly and that we’ll have started getting stuff moved over by my birthday this weekend. Did I forget to mention that I’m totally considering this the best birthday present ever? Well last years present of taking John home from his second brain tumor resection was a pretty fantastic day too but I knew that chemo and radiation would soon take over and I wasn’t really looking forward to that. John has finished his chemo and hopefully this next year and many more will be cancer free. So that means I’m hoping we get to move in, get settled and enjoy some good health for awhile.

In honor of all that is going on I joined a big giveaway that will open on the 3rd. I don’t get to enter but I hope one of you will win the big prize and have fun spending what I can’t. That’s all I’ve got to say about it. To find out what the big prize is head back on over tomorrow morning and get entered! Good luck!