Throwing in the towel

More than a few times over the last few weeks, I've mentioned throwing in the towel.  Currently, it is still in my possession, but I haven't ruled out hurling it as hard as I can in an effort to officially give up!

I guess it's not really that bad, but geez...sometimes it sure does feel that way.

The last few weeks, which have actually turned into the last few months, seem to have been some of the hardest we have experienced in a long time.  Fred looked at me one night recently and asked if I thought that we would look back a few years from now and wonder how we made it through this time!  To be honest, it was hard for me to imagine a few years from now.  What could that possibly look like?

I realized that I've all but lost the joy and hope that used to shine bright enough to eliminate the weight of the challenges of daily life.  For some reason lately it's been so much harder to keep those lights shining.

Logan has been fighting an infection of sorts since about Thanksgiving and I can't recall a time when it has been more difficult during an illness for him, including all of our hospital visits.  Maybe once when his seizures seemed to last throughout the day and night, but at least I kind of knew what we were dealing with.

This time it seemed so difficult to figure out what was going on with him.  Once we would get one thing somewhat figured out, another issue would pop up.  He can't tell us how he's feeling, but to see you child cry or have no energy or keep getting sick to his little tummy and not be able to help him....it makes a mama feel like a bit of a failure.

Over Thanksgiving we went to Holden Beach.  As a side note, it was a wonderful trip!  We had a great house, ate wonderful food, enjoyed the beach (sand and surf) and tried to do as much relaxing as possible. During that time we were dealing with increased seizures with Logan, but nothing too major we thought. I think it was Thanksgiving morning or maybe the day after that he woke up coughing with a runny nose.  He coughed and his nose ran like crazy, but he was still smiling and trying to be his sweet, happy little self. During that time also, he had quite a few additional seizures and we began to get a little concerned, but he bounced back as usual, so we just tried to keep a close eye on him.

When we got back we started getting in the groove for Christmas. Started....but I never seemed to actually get in the groove.  I guess it was the warmth outside instead of the cold typically associated with Christmas trees and twinkling lights, but whatever it was Christmas seemed to come and go before I could even get a handle on the fact that the season was here and we were getting ready to ring in a new year!

We had a great Christmas, so I don't want that to get lost in all the clutter that is the rest of our lives.  Freddie got a Polar Express REAL electric train and was truly the most precious 5 year old on the planet playing with it.  It was like a Christmas story (not the one with the pink bunny outfit!) watching a sweet little boy play with his new train on Christmas morning...and he didn't care to open anything else. At least for a little while.

Christmas day was wonderful and I realize that part of what makes it wonderful is a family tradition that everyone is on board for....we took our tree down that night!

Don't think I'm a scrooge.  Our family is so excited to get our decorations up right after Thanksgiving.  We keep the lights on all the time, listen to Christmas music, read Christmas books, watch Christmas movies and celebrate Jesus' birthday.  We really do enjoy the excitement of the season, but once the presents are opened and about the time lunch is cleaned up....it's time for the tree to come down.  Freddie was even excited to 'get this place cleaned up!' 

While everything was moving along at what feels like mach speeds sometimes, Logan is somewhat unstable. That may not be the best term to use, because he's not unstable as in he needs to be constantly monitored by professional medical personnel, but he's not in the best place he's ever been.

As we get through Christmas, we are still monitoring his seizures which are not under control and we are seeing some of the worst ones we've seen in a while.  They do not warrant intervention by us, in the form of medication to stop them immediately or a trip to the hospital, but it is concerning to see the type of activity we used to see before we started the diet. And also to not be able to understand why things are getting worse.

As with Logan, nothing is extremely simple so we also experience more problems with the skin around the button for his feeding tube. We have our pediatrician swab the area to see what is going on because it continues to look fiery red and painful.  She discovers two different types of bacteria and schedules an appointment with infectious disease.

On one Monday in December, we started at the Neurologist office, saw Infectious Disease during the middle of the day and ended the day at the GI clinic.  Headed home with another medication increase for his seizures, a prescription for 2 creams for his tummy, an oral antibiotic for his tummy to try and clear it up once and for all and these adhesive dressing strips to use to see if we could help his tummy from advancing to the infection stage again.

It would take weeks for all of the following to play out, but basically Logan has a reaction to the oral antibiotic (Cipro...he had a full body rash) and the wonderful dressings that we think would be a huge help are difficult to find and not covered by either our primary or secondary insurance. While we would typically just decide it was worth paying for and pay for it out of pocket, these are about $7 for one 4x4 square and he will use one a day.  Unreal.  Because it is such a wonderful product and just recently came out, there really is not something comparable.  But, our GI clinic is so wonderful and is working with us to try and help us find somewhere that may be able to help us get it at least partially covered.  And so the story continues.

Just after Christmas, Logan also developed another runny nose, mainly sinus congestion. We are still working with his neurologist on trying to get his seizures under control and are working through an increase in his meds.  The increase seems to bring about changes in him that we try and monitor as well.  He starts to suck on his tongue a little, seems sleepier at times and is somewhat fussy for no reason.  At least we think it's the medication. 

On Thursday night however, he wakes up from a late nap with a pretty bad seizure.  When Freddie and I get home from his gymnastics class, Logan is kicking and playing like crazy in his chair.  Laughing and having the best time.  My mom says he's been doing it for an hour.  Something about it seems strange though.  I walk over to him to say hi and he stops playing and seems to be looking around for my voice, but he's not looking at me.  When I stop talking to him and walk away, he starts laughing, kicking and playing again.  Once more I walk over to him, but can't get him to focus on me.  Now, we're a little concerned.  So without trying to alarm Freddie, my  mom and I try to get Logan to focus on a toy, on us, on our voices, but he continues to act different and is not focusing.  I wait for Fred to get home and we decide I need to call the on-call neurologist because this all seems so different to us. 

After much discussion with the nurse and a soft suggestion that if he is not back to baseline we need take him to the ER, we decide that this does not warrant an ER visit, but we need to go ahead and take him in for labs that next day.  Again, we try and keep a close eye on him that night.

The next day is the Friday just before the new year and we get labs done to check Logan's levels and make sure all is okay after the increase in his Depakote.  While we're there, we ask the Pediatrician to just check him out since he has had the congestion for about a week. We find out he has a pretty bad ear infection in his right ear, where his tube has started falling out.  This could help explain some of the craziness that has been going on!

Because the tube is coming out we can't just use drops, we have to put him on an antibiotic. Because of the diet he's on, there are only a few antibiotics we can use.  Our antibiotic of choice doesn't come in dosages that will work for Logan, so we opt for our second choice.  Again, because of the diet we have to call the diet nurse to find out exactly what we can use. There is a specific form of a specific antibiotic from a specific manufacturer that is approved for Logan to use.

As I mentioned, it is the Friday before New Year's and our unbelievably wonderful pediatrician (and sweet, encouraging friend) is calling around trying to find the medication.  It's just amoxicillin which pretty much everywhere carries, but because Logan cannot have carbs or sugars, we need to find a compounding pharmacy who can mix it in form we can put through his tube.

Easier said than done.

None of the 3-4 compounding pharmacies she called has the form or manufacturer that we need. We finally find it late that Friday evening from the Walgreen's near us.  The pharmacist proceeds to tell us that she doesn't know how I'm going to get it in him and good luck. 

I try that night, as I feed him his last feeding while he is asleep, to push the antibiotic that I have mixed with water through his tube.  The short version is....it's not happening. Basically it doesn't dissolve and is even getting stuck trying to go through. I write it off that night, figure we at least got some in him and leave the rest in syringes in water (hot and cold) overnight to see if it dissolves over time.  In the morning, it looks exactly the same.

We finally figure out that we can crush it further and pour it in with his food as we feed him, although it clumps and gets stuck and makes feeding him extremely difficult, but it's the only way to get it in.  Because I'm about the only one that can get it to flow through the tube, Fred and my parents take turns taking Freddie to school the following week so I can stay here.

During all of this Logan starts getting sick to his tummy, just once a day for a couple of days, so we think it's just the congestion and all of the junk in his throat making him gag. His temperature is fine and we have a suction machine here which is helping us to keep all of the 'junk' out of his lungs, which means we don't have xrays or end up in the hospital.  A ray of light in an otherwise fairly dim time.

We go a whole day with Logan keeping his feedings down on Tuesday, but by Wednesday he has been sick 3 times, once losing all of his medication at night.  I try to get his meds in him again, by tube this time instead of by mouth, but have no luck as the medicine starts to dissolve in the water and becomes like glue.

Once we got Logan bathed and cleaned up again (he had just had a bath (his 3rd for the day) before he got sick) we put him to bed and I started trying to get a handle one what was going on and how to keep his food and meds in him.  I had talked with our doctor a few times and the only thing we could come up with was that the amoxicillin was just too rough on his tummy. He was going to need to be seen the next day to determine what to do next.

Meanwhile I call a wonderful friend of mine, whose husband is a pharmacist and try to figure out where we stand with all of this, from a medication perspective.  Was he going to be okay missing his Depakote dose?  Can I give him the Depakote after it starts to dissolve?  Are there any other options as far as getting the amoxicillin in him?  How do I keep his feedings down?

We decide to reduce the strength of his formula on Thursday to try and help him keep them down since it's a really thick formula.  We head to the pediatrician's office and come to the conclusion that we need to stop the amoxicillin, give him a shot of rocephin (because his ear is not completely healed yet) and keep an eye on him with the possibility that he will need another shot if his ear doesn't get better.

We do well Thursday and Friday with keeping his feedings down, although he is pretty lethargic and wiped out.  I will tell you though, he only missed one therapy that entire week.  I'm not sure if that means he is one strong kid, or I am one mean parent!  Either way, we powered through!

Saturday morning about 2am I hear him getting sick in his room.  Fred has just gotten in bed with Freddie, because he still wakes up during the night sometimes. I run in and check on Logan and then run get Fred to help me. We strip his bed, bathe him, wash his sheets and clothes and all head back to bed.  I get in the bed with Freddie and Fred and Logan sleep in our bed.

Still in a bit of daze about what in the world is going on with him, we proceed on Saturday with reduced strength formula and feeding him slowly.  One thing we know for sure too is that his little bowels need to be cleaned out.  As I'm texting our sweet pediatrician about poop on a Saturday (and not her Saturday to work!) trying to figure out what to do, he poops.  Not once but 5 pretty good sized dirty diapers!  I feel like  we are starting to get things back on track.  Maybe this was one of the reasons he was having trouble keeping his food down?  Who knows, but it is certainly a piece of the puzzle.

Towards the late afternoon I start to feed him and realize that his tummy hasn't emptied from a feeding three hours earlier.  It's hard to explain without experience with feeding tubes, but this wasn't normal.  So....this time we place a call to the after hours GI doctor to see what this means.

Basically we learned that after an infection everything could slow down a bit, so the tummy emptying slower will hopefully be short lived once we get his ear infection cleared up. 

Whew! At least it wasn't something more serious...just another piece of the puzzle.  We need to keep an eye on it and make sure to tell them if it doesn't start to resolve itself, but for now we seem to be okay to just watch it.

So, things start to look up over the next few days.  We are still on a reduced strength formula and feeding him slowly, and although he still seems somewhat tired and lethargic at times, we still feel like we are headed in the right direction! 

We visit the pediatrician again and make sure that his ear is looking better and GOOD NEWS, we don't need another shot and we are on the mend. 

Over the next few days we really are dealing with only the seizure increases and what may be side effects of the medication increase.  We decide to have a routine EEG done to make sure there isn't anything going on that we aren't seeing.  After two hours and him sleeping even when we didn't think he would, I don't think there was anything out of Logan's ordinary, although we haven't received the feedback from the neurologist.

So....we're better, getting back in the groove and doing some of the typical things that we do.  One of those thing being going to the Health Department in Rock Hill to have his appointment with the sweet, sweet dietitian there. As I'm getting Logan out of the car, where he has fallen asleep for the second time that morning (it's only about 9:30) I notice drainage from his left ear. Seriously??  Surely it couldn't be an ear infection in this ear?  His congestion seems to be all cleared up!  How could this ear be infected?

So I send a message to Ashley (our doctor) before we even head in for our WIC appointment and we decide that we can just put drops in this ear since his tube still seems to be intact. We have drops at home that we will just start when we get home.  But before we leave our WIC appointment, Ashley calls back because she has realized that the medication that he had a reaction too a few weeks earlier (Cipro), is the same thing we were going to use for his ear.  So, that means we have to come up with something else to use, then call the diet nurse and make sure we can use it, find it at a nearby pharmacy hopefully and then pray for no reactions.

That was all on Thursday and here we are on Sunday. 

I guess it's this infection again, but his tummy is emptying slower and we're back to feeding him really slowly...even skipping feedings, but we're keeping it all down.  His ear is still draining, but hopefully that will also clear up.

He is back to being happy, vocal and his sweet little self again...despite all of the chaos that has defined his life for the last couple of months!

I realize that the level of detail describing our lives over the last few weeks is not necessarily needed to explain what has happened, but I need it. 

I need it to record what has been one of the toughest couple of months I can remember.

I need it to dump all of this stuff out of my brain, because it's taking up room I need for other stuff.

I need it to remind myself that these are things that we have been through, not the definition of who we are.

I need it to remind me that this was just a couple of months in a much larger picture.

And I need it to help me keep in perspective that this is only part of our lives. 

Throughout this same time period, we have been so excited to watch Freddie WANT to go back to school.  To watch him grow and change and learn more and more each day. To listen to him talk about going to China each day at school and all that he is learning on that journey.

Right now the TK classes are journeying to different countries and learning all about each country...the food they eat, what the children play with, the animals in that country, the language they speak and much more that I know I'm not even aware of!  They have packed their "suitcases", they have passports, and their "flight" leaves every morning at 8:10am.  Each class is a different country.  Right now they are traveling to China each day, next week they will travel to Germany and then towards the end of the month they will experience Kenya (Freddie's classroom). 

As crazy as things are with Logan and as much as I feel like I can't seem to get things under control for him, I could not be more grateful to God for helping us find PDS for Freddie.  What a blessing that has been, in so many ways.

Fred has been busy with work as well and although that presents its own challenges, we are so thankful that God continues to bless us with those challenges. And the fact that we are in a position for Fred to help with taking Freddie to school or picking him up or simply being home when we need him.  I am overwhelmed on a daily basis how blessed I am to have a husband who is so involved, engaged, loving and supportive. Posts like this would have a very different tone if it wasn't for him.  He makes this all work and I am so incredibly thankful for him

This all only works also because of Nana and Ga Ga.  Nana is still here much more than she should have to be, but it has taken more hands lately than usual to keep this all going.  And Ga Ga is going to PDS about 20 years later picking up another Freddie (the 3rd instead of the 2nd this time) and has been such a blessing.  Not sure what we would do without our family!

As for me, I've fallen apart more than a couple of times lately.  It's just so hard.  So incredibly hard sometimes. And as harsh as this may sound, I'm not really looking for encouragement or additional hands to help out.  I don't need to always hear that I'm doing an amazing job. 

Don't get me wrong, I love the encouragement and wouldn't trade all of the love and support we receive for anything in the world. 

But what I really want is to just be able to take care of my family on my own. 

I want my children to be able to run around and play outside together.

I want to be able to go to church as a family, drop both kids off in their classes and head to our couples Sunday School class WITH my husband.

I want for an ear infection to be easily treatable and not a 2 month long ordeal.

I want dinner time to be where we sit down as a family together and eat a meal that I have prepared, not a time when we beg Freddie to stay in his seat, while we are all running around trying to get things ready for bed including feeding and bathing Logan and giving him his evening meds.

I want to put my children to bed at night and enjoy some TV, conversation, an occasional movie or even a late dinner with my husband.  Not a time when we are both on edge waiting for one child to wake up and need us to lay with him and listening for the other child's evening seizure.

I want to decide to go to bed early and be able to do so, instead of having to stay up late enough to make Logan's formula, so it doesn't expire in the 24 hours before we are able to finish the last feeding of the next night.

I want to be able to go places with out it being so hard.  Taking all that is required for Logan and having to keep our emotions and frustrations in check because it is sometimes so hard with him, so they don't transfer to Freddie creating a somewhat toxic situation for us all.

I just want things to not be so hard all the time. 

I don't want more help, although I am so grateful for all the help we have. I just want to be able to do it on my own.

I don't want my children to be different, I just want to know how to do the best that I can for them.

I'm trying to make changes that will positively effect me and everyone around me, but I'm somehow getting lost in all of the clutter of life. 

I have read recently that thieves do not steal from empty houses.  The devil is only attacking so hard because God has something big in the works. 

I know all of that and yet I am still getting lost. 

But each day is a new day and we will get through this.  We don't have to do this alone and if I can just keep looking to God, trusting in His plan, seeking His will in each and every thing I do....I KNOW it will get better.

It's just plain hard.

But anything worth having is worth working for, right?

We have to make hard decisions and we have to make the right decisions.  Change is hard, but growing is harder.  Trying to figure out what it is we are supposed to be learning while we are trying to help our children learn and grow at times feels all but impossible.

But nothing is impossible with God.  I just need to keep remembering that.

He is on my side. He has my back and He leads the way forward. 

Seems as though God has me covered.

I....CAN...DO...THIS.

Thanks for letting me vent.  Even as the tears start to flow again, the world is a already getting a little brighter!