A Day in the Life

Recently I was asked by a friend what I did all day.  This question, when given to most stay at home moms, elicits a great deal of internal frustration, because there is always the perception that stay-at-home-mom’s (SAHM’s_ are sitting on the couch watching Rachel Ray or Ellen or The View, when mostly the day is full of caretaking and foodmaking and tantrum managing of  little ones.   And parenting a child with major health issues is even more involved, so  I decide to begin my answer with a layout of that day which is only one day of dozens that is a lot like it.

“Well this morning,” I say, “we started with occupational therapy….”

I only realize later that I had failed to mention the real start of my day.  Feeding.  Or preparing the feeding–more aptly termed, “a special medical diet to control seizures.  AKA: The ketogenic diet.”   My day begins by concocting my son’s special ketogenic diet formula, which contains 4 ingredients and must be carefully measured out according to his ketogenic dietician’s instructions.  His diet is all-liquid since he is G-tube fed. He does get one very small feeding by mouth at dinnertime to retain oral motor skills.  They call it “therapeutic feeding,” which is just a fancy way of saying eating that is for practice, not nutritional purposes.  So all his nutrition goes through the G-tube.  Once I prepare the formula,I usually put together his six morning medicines. One is the experimental drug and must be injected directly into his g-tube using a medical syringe.  The other five are a mixture of liquids, pills and powders.  The pills must be crushed and mixed into water in order to be given through the G-tube.  Then I have to prepare his feeding pump which involves washing the tubing, hooking up a new bag to the pump and resetting the machine for the first feed of the day.  This use to take me over an hour to do.  Now I can do it in about 45 minutes and I am pushing to get it down to thirty.

Then I have to feed Silas, which involves administering the various medications and hooking him up to the feeding pump, something that takes another 30 minutes or so.  So all in all the diet, medicines and feeding process takes over an hour in the morning.  I feed him every three hours during the day, but once his formula is made, I have enough to get through the entire day so I only have to measure out his medications at each feeding.

Medications have their own schedule. One medicine I give 4 times a day.  Two more medicines I give 3 times a day.  Another medication is given twice a day. And then several of the medications are given once a day.  The medication schedule is very confusing so I have made a schedule showing which medications are given at which feedings. That way all the medications, whether given four times, three times, two times  or once a day are given at the appropriate time.  I have the chart memorized but every few months it seems like medications are either added or dropped and I must redo the chart and try to train my brain to remember the new schedule which slows me down when I prepare for each feeding.

At night Silas is on continuous feed  since mitochondrial patients actually do best when they do not have to go long lengths of time without food (like at night).  I actually don’t mind this since it seems like a better option than getting up in the middle of the night to give him a snack.  The machine pumps about 1 oz an hour in his tummy so that he receives a full feeding by morning.

All this to say, I spend a lot of time with the feeding and medicine schedule during the day.  It feels a bit like the old days of having a newborn and having to feed them around the clock, except that the nighttime feeds are way better with a continuous feeding pump.  I do still get up usually once or twice a night to check on him because he doesn’t really sleep very well (common problem with neurological diseases).

After morning feedings, he goes to therapy.

On Mondays it is speech therapy. Tuesdays it’s physcial therapy. Wednesdays are occupational therapy.  Thursdays are my husbands day off, so I volunteer at my daughter’s school for a short time in the morning. And Fridays are generally a day to catch up on everything else.

Therapy is a big part of our life.  Right now through the First Steps program (an Indiana state funded program) the therapists come to our home, which I can say is absolutely wonderful. In fact I am dreading when he ages out of the program at age three and I  have to take him to an outpatient therapy clinic everyday because I know that means I will spend so much time driving around, going to appointments that I will hardly be home.  I do have to participate in all therapy sessions so I can learn to practice the therapy techniques at home.  So his therapy sessions also become my therapy sessions and not a time for me to do anything else.

Add to that his doctor’s appointments which fill up our schedule on a regular basis and may include lab work, xrays, ultrasounds and more.  For example, the day I was asked “what I did all day” happened to be a day I not only had a doctor’s appointment in town (thankfully no traveling to Indy or Cleveland) but also had lab work and a urinalysis done.  The doctor’s office does not do lab work. So that means not only do I have to go through the process of registering and waiting at the doctor’s office, I have to go through the same registering and waiting at the pediatric outpatient lab, which has way more forms to sign than the doctor’s office.  So after an hour long appointment at the doctor’s office, I have to feed Silas before going to the outpatient lab, which means dragging along his feeding pump and special food. At least someone in the health care field had the foresight to invent a feeding pump that will fit discreetly in a backpack and run on a battery.  It isn’t ideal, but I have figured out how to make it work on the road.  I’m not sure all this gets easier as time goes by or if I just become more accustomed to the fact that everywhere I go with my son means hauling a bunch of stuff with me and that really isn’t going to change anytime soon.

After feeding him, we go to the lab, register and wait, then get called to the room where he is stuck in the arm for several vials of blood and “bagged” for a urinalysis (a term the lab uses for the  plastic bag that they stick on my son so he can urinate in it–it resembles a ziplock with stickers at the top that get peeled off and stuck to the skin.  It is most uncomfortable looking, but I have seen my son with a catheter and based on his reaction, the catheter is worse than wearing a bag.)  This whole lab process takes around an hour and that is pretty good.  I have been in the lab for several hours before, spending most of that time waiting since it is a first come, first serve facility.  An hour is speedy.

As we head home I realize it well after lunch time, even though we our doctor’s appointment was 10:15.  That is the nature of medical appointments.   It is time for Silas’s nap and I finally eat lunch around 2:00 and then my daughter gets picked up at 3:10ish from school.  I think maybe there is an hour in there for me to actually get something done, but I can’t really remember what I did with that hour.   Probably cleaned up the dishes or threw some laundry into the washer.

It has not been a bad day, but I can’t say I enjoy running from appointment to appointment.  But I am thankful that my son is not in the hospital. I am thankful that the experimental drug seems to be making Silas stronger.  And I try not to be too hard on myself about not really getting anything done.  Most days are appointments and therapy and feeding my family and doing our laundry.  I used to think that really sick people spent all day laying around sleeping.  Now I know that sick people really spend their days in medical facilities running from one place to next.  For now I try to enjoy all that time with my son.  This is our “normal” which is really not very normal at all.  But it doesn’t mean there can’t be joy found in these small moments.  So that is what we’re doing–enjoying the small moments and thanking God for his grace and mercy which is always an ever present part of our lives.

December Update

Every time the holidays roll around it feels like a giant sprint to Christmas.  There have been so many things going on around here, it looks a bit like a three ring circus.  Since it’s Christmas Sam’s schedule always ramps up.  That is just part of his job and we expect it every year.  This year our Christmas program is actually done in a variety of “homes” in our church body.  It has been so fun to go to a person’s house and eat Christmas cookies and do a carol sing-a-long.  There are three music groups going to 9 homes total, so each group performs 3 times.  It is so much fun and a great way to fellowship and interact with people from church.  It really makes our big church feel a little bit smaller this way.  There is also our drama team performing 3 different sketches during the Advent  season on Sunday mornings (and if you didn’t know it, we double cast every drama piece now, so that both Sunday locations can have live drama).  And the choir is preparing for Christmas Eve services.  So many wonderful ways to celebrate Christ’s birth.  So that has kept us busy, but it is such a wonderful way to be busy!

Silas overall has been making progress but we’ve had lots of ups and downs. He has had a urinary tract infection, is teething molars, and had the stomach flu over the last number of weeks.  All of these things can cause seizures to increase (sickness in general causes more seizures).  We especially noticed it with the urinary tract infection but did not know what was wrong with him.  So I took him in to see the doctor and they ran labs and a urinalysis and that’s when we found out.  As soon as he started on the antibiotic  his seizures dropped dramatically.  It made me realize how much any infection impacts his seizures.

So is the diet helping?  Yes, we think so, although we have not gained seizure freedom on it.  I do think it has reduced his seizures (when he is healthy) and made them weaker.  He has had some really good days!  We are thankful for that!  Unfortunately it is not uncommon for the diet to mess up a few of the things on his labs and we are now in the process of “tweaking” things for a second time to try to get normal lab results from his blood draw.  Last time they tweaked things (to help a GI issue and his bicarb level on his labs) it fixed one problem but made his seizures worse for  a few days.  Now we are tweaking again (due to another lab that is mildly elevated and needs to come down), I am worried not only will it make his seizures worse but that we will not have as good of seizure control.  They are basically changing his ratio of fats to carbs, which is the whole mechanism for controlling the seizures in the first place.  They are adjusting the ratio so it is not as strict.  I know it needs to be done to get his labs normal again, but I feel like we were finally getting somewhere.    It is really a slow process of trial and error.

The new drug is also going well.  I have had a bit of problem administering it.  It is a liquid drug and the base for the drug is sesame oil.  If you know anything about oil, it coats things.  So when I  put it down his g-tube it coats the tube and hardly any gets to his belly.  After calling around, it was recommended that I skip going through the extension tube and insert the medicine syringe directly in the button in his belly.  This has made it far easier to administer, but now I am having problems with the button leaking when I do that.  Even though I give my son a half dozen other meds and have no problems with those, the experimental drug has been the hardest to administer.  But is it working? Overall, he is moving more and is stronger.  I can tell when I do physical therapy with him that he is doing more of the work.  Only time will tell if that’s the drug.

However, his sleeping patterns have been all over the place, which I largely believe is due to his molars.  Some days he takes an hour nap all day long and then the next day he sleeps for 4 hours straight.  One night he’ll fall asleep at 6:30 pm for bedtime and the next night he’ll be up until 11 pm.  I know that some kids are just like this, but I don’t believe this is Silas’s personality.  I think when he has any issues (teething, getting sick) it affects his sleep.  In the case of molars I think it is making it hard for him to sleep.  Then when he doesn’t get his sleep one day, he is exhausted the next day and makes up for it.  We have been in this pattern the last number of weeks.  So although I’m hopeful the drug is working, I also have a hard time telling what is normal these days.

I also have to say that I am thankful for your prayers and your gifts of concern and love for our family.  I really think that people are not only praying for my son, but also for me.  Although I have many reasons to be discouraged and sometimes am, I have also had a number of really good days where the Lord has reminded me of his promises and I feel hopeful  about that day.  I know the days of discouragement will still come, but it is refreshing to have  days where the burdens of life are not so heavy. The truth is, I cannot explain why.  I just think that Lord is hearing the prayers of many and giving me something extra to help me through my day. For that, I am thankful.

 

Additional Info

I thought I would post this information for those interested in knowing more about the drug trial we’re starting.  This info is slightly old, in that they had only treated 44 patients at the time. Currently there have been approximately 60 patients have been on the drug for a cumulative exposure of over 10,000 days.

DRUG TRIAL INFO: FROM EDISON PHARMACEUTICAL TELECONFERENCE

 

Starting the Drug EPI-743

We are starting the drug on Wednesday! Yes, the day before Thanksgiving.  For that reason, we are heading to the CC only for the day since we have a busy weekend here at home.  They have to administer the first drug at the clinic and then we must wait for 4 hours to see if there is an allergic reaction (that is part of the purpose of the study–to record allergic reactions, side effects, etc) and then we will head home as long as everything goes okay.  They will send a supply of the meds with us because we will not have to go back until week 6.  Until then, he will be monitored by our pediatrician.  I am so glad that we only have to go to the clinic 4 times, although the other 3 will be in the heart of winter, at least it will not be every week.  Many people are asking why we want to make the drive in one day for this first visit.  Well, let’s just say we already had lots of Thanksgiving weekend plans in place and on top of it, it’s my husband’s busiest time of year and he has a very full Saturday and Sunday schedule including Saturday Christmas rehearsal,  Saturday church, Sunday church and our first “home tour” Christmas concert Sunday evening. Plus Thursday and Friday are full of family things and I have a 15 page paper to write for my Master’s class (sounds like fun, huh?).  Usually we decorate for Christmas too since this is usually one of the last weekends with some free time before Christmas, but we have decided to decorate in stages this year as our weekend is already very full.  If we don’t put up all our decorations this year, that’s okay.  If we have a tree and that’s it, that’s okay. When your life gets so full, getting things done just isn’t as important as spending time together.  People have made too much of the trappings of Christmas and the gift buying.  I don’t want to stress myself out about Christmas because it’s not about the gifts or the decorations or the parties.   It’s about celebrating Christ’s birth together.  It’s about worshipping together and loving each other.

When you pray for Silas please remember him on this new drug.  Pray that he has a positive response to it and no side effects.

Happy Thanksgiving everyone!

Cleveland Drug Trial

Life has been busy, busy, busy here.  This week has been full of medical phone calls.  In one day I was on the phone with four different doctors, multiple times, for multiple different issues with three phones around me.  Ridiculous.  I won’t bore you with the details but one of them had to do with the experimental drug we are trying to get Silas on.   We are headed to Cleveland on Friday to determine if Silas is a candidate for the drug trial EPI-743.  The doctor has to see Silas and evaluate him before deciding to include him in the trial.  I am nervous, hopeful, and always wondering: are we making the right choice?  Only in hindsight can we ever know that answer.  When you have a pretty hopeless medical case, it is unfortunately true that the doctors start letting you call the shots.  Why?  Because they really don’t know what to do with your child or what will work, so it becomes our job, which is pretty scary when you think about it because I don’t have a medical degree.  I just have to pray and trust and hope.  So off we go. Cleveland here we come. Dr. Parikh will be seeing Silas who is one of the top doctors in the field of mitochondrial disorders.   It’s a short visit with him in the afternoon, then next week we have another trip to Riley–checkup with ketogenic diet doctor, a surgical post-op appointment, lab draw, and spinal tap (Ick).

Keep Silas in your prayers, especially concerning the drug trial and seizures.   (Seizures are better some days, worse on others.  Still trying to determine if the diet is helping. Alertness is much improved.)

 

 

 

Home

If you haven’t heard the news, we are home from the hospital!!!  We got home Sunday night.  Monday I spent the day wandering around in a fog looking at the large piles of laundry, mail and ripe tomatoes and trying to do something about it.   That, and nurse an aching head. (Thank you fall for all the allergens).  I found that enough aspirin and caffeine will cure the aching head but the laundry?  I guess staring at it isn’t going to make it go away, so better go do something about it.  Happy fall, ya’ll.

 

Keeping it Real

This is hopefully our last night in the hospital this week. This makes visit number five this year.  I hope not to return for a long time, as I am at the point where I cannot wait to get home and stay there until Jesus comes or I die, whichever comes first.

Things I am looking forward to:

–sleeping in a real bed, not a plastic-covered couch with a single blanket on top of me for a week.

–using my washer/dryer when I want. There are two washers and dryers on our floor which are not really enough for the dozens of families on the 8th floor, so they are frequently busy.  This afternoon someone proceeded to wash a very heavy pillow and then used the dryer for 4 hours this afternoon on that same pillow.  This leads me to ask: could you not wash your pillow when you got home?Doesn’t the hospital have 4 million clean pillows to borrow?

–a single uninterrupted nap for my son.  It never fails, as soon as he falls asleep for nap, in walks a doctor with a crew of residents in tow.  And since my son is such an interesting case, the doctor then proceeds to lecture to the resident doctors about preventing calcium buildup in the kidneys for mitochondrial illness while my son is trying to sleep.  And though you might think he would sleep through it, he does not.  Apparently he finds medical lectures riveting.

–not having nightly visits at 9 pm, 11 pm, 1 am,  3 am, 5 am and 7 am. Although they are so considerate and quiet, the nurses have to do their job.  It’s not their fault.   But still.  The thought of a night of only one interruption sounds like a wonderful world.

-not subjecting my son to the 4 am blood draw.  It’s a cruel world folks. But those morning rounding doctors want their labs ASAP.

–No more cable TV.  Please give me back my narrow assortment of local channels.  At least they don’t tempt me to waste so much time.  I’m ashamed to admit it but out of boredom I watched far too many episodes of “The Real Housewives of New Jersey” this week, which seemed to be on no matter what time I turned on the TV.  I find it ironic that they are called “real” housewives, when I have yet to see them do laundry or wash the dishes.  Instead of watching them have cocktail parties in strapless dresses, I would like to see one episode where they are scrubbing toilets in their sweats with no makeup on.

–my family, my friends, my church, my neighborhood–I miss you all!

Besides that, I need some sunshine, sleep, and the normal routines of life.  Be home soon.

 

Thoughts on the Hospital

Hospitals are very tiring, very sad places.  You can see it in the eyes of the patients and also the eyes of the caregivers. The strange thing is that this hospital is a wonderful facility, with caring nurses and brilliant doctors.  But it is not home. And the people who are here do not want to be here.  I have mostly felt positive during our stay here, until I get tired and then I’d rather be anywhere but here.  I know I have been at Riley a short time compared to some who stay here months. Yet I feel the slow draining of strength and vitality that happens when one is confined.

Our cat, when we put her in a cage to take her to the vet would cry and cry, until finally she would settle down and be eerily quiet.  This wasn’t a contented quiet, but a resigned giving up of her freedom.  That is how a caged animal, or human, responds to their confinement.  That is how the eyes of the parents here look.  Absent.  Despondent. The nurses in contrast, talk animatedly to one another about their plans, their families, and a bit of gossip.  The nurses–who are the workhorses of this place– seem energetic in comparison.  Seven-thirty rolls around and they go home.  We rustle around in empty drawers searching for a snack, anything to appease our hunger.

Yet in the Bible, when Paul and Silas were in jail, what did they do?  Did they wallow around in their misery?  Did they complain about their surroundings?  Did they accept their entrapment as fate?  No.  They sang.  They sang despite their  surroundings, despite their confinement, despite the fact that they may not be saved. They may not get out. They may even die.  They praised God.

And the walls came tumbling down.

 

A few days more in the hospital

So we liked the hospital so much we decided to stay here for a few days longer!  (*can you sense the sarcasm*)

Actually, Silas is doing great and could have gone home today, but while we were here we discussed our concerns about Silas’s continued seizure activity that has not improved much while on the diet.  Although we are seeing other good outcomes from the diet (increased strength, alertness, etc.) and the seizures haven’t gotten terribly worse, they haven’t gotten terribly better either.  So we talked to the doctor about what we could do to improve the seizure control and he gave two suggestions: either tweak Silas’s special diet even more and see if we get improved results or put him on a new medication.  The medication, called Topamax, has a couple of down sides: it will make him sleepy (already a problem given his condition) and it usually doesn’t work very well with his special seizures.  There are only 2 drugs that help Silas’s rare and difficult-to-treat seizure condition.  He failed those two drugs.  So all the drugs that are left, including Topamax, are considered second-line therapies.  In other words, not as good at treating Silas’s seizures.

The other option is to tweak his diet, which we decided to do.  This could possibly improve or eliminate his seizures or it may do nothing at all. There is no way to know until we try.  The positive side of this is that he is already on the diet so it is just a matter of tweaking it a bit.  The down side is that the diet may be too hard for him to handle and cause some lab tests to go haywire.  That’s why they’re keeping him in the hospital for a few extra days, so they can monitor labs and “ketones” in his urine.  We weren’t originally planning on changing the diet this week, but after talking to the doctors, it seemed easiest for Silas and I to stay an extra few days and get this done, rather than come back to the hospital and be admitted in a month’s time.  So that’s what we’re doing.

A change of plans.  I’m getting more flexible all the time!

I find that the more I have tried to plan my life, the less I’m able to.  I just have to lean on Jesus and not put my hopes in this world, because really this world has very little to offer us.  We don’t even know whether we will be here next week! Sure, there are wonderful temporary blessings, but it just does not compare with the blessings and fulfillment we will find in heaven.  When I think of heaven and how brief this life really is, then it helps me to live with an eternal perspective rather than a here and now perspective. Thank God this life is not all there is.

“May I see always the things that are eternal and never those that are only temporal. May I shun any joy that is without You and never seek any that is beside You.”  –Thomas Aquinas

Day 2

Siilas had a good night last night.  He seemed to sleep well which means his pain was controlled and his post-op fever stayed down which is another good sign.  They gave him very small amounts of his formula through his feeding tube on a continuous feeding pump and he did not show any signs of discomfort.  They said that the belly is tender and can get sick easily after surgery so they are starting him on his diet very slowly.  We will increase his formula today, but still will keep him on the continuous feeding pump as that is easier on his belly than one big feeding at a time.  This morning he seemed alert and responsive, moving his arms and legs and responding to his toys and our voices.  We all got a good sleep which says more about our tiredness than anything, since hospital nights are full of interruptions.  Let me also add that I think this is the quietest hospital we’ve ever stayed in, partly due to being in a private room, but also the design of the new building too.  I don’t hear a lot of noise from other rooms.  I remember times when Sam was in the hospital and not only did you have lots of noises from your roommate and their machinery, but we would frequently hear people’s alarms going off in other rooms and it got very annoying when it was three in the morning and an alarm just kept beeping and beeping.   I understand the need for alarms because the nurses need to know when someone’s heart rate or respiratory rate changes drastically, but here at Riley I really don’t hear it.  A big blessing!   We are thankful to have such good care here.  The nurses are fantastic.  Thanks to all who are praying and leaving us notes/emails/messages of care and concern.