Adjusting to life at home again

Thank you to everyone who has been praying for Drew and our family - we draw on that as one would refuel their vehicle.  Some days I feel as though someone is siphoning my reserves away while I'm not watching, others I actually feel I have enough to run on.  Today would be one of those days I have a hard time finding enough!  Thank goodness it's almost over!

I should update everyone on how our last hospital stay went... we went in Wednesday night and the nurses were quickly chasing Drew down to put an NG tube (naso-gastric) - what we are calling a "straw" for Peyton - into Drew's nose that goes down to his tummy in order to get him some calorie support.  He didn't like the procedure too much, but once it was in he didn't seem to mind or notice.  Thursday morning a couple nurses came by to train me on how to put the tube in because we will be the ones managing it at home from here on in indefinitely... I thought I would faint at this though it wasn't as bad as I feared.  Drew proceeded to pull that one out while I had my head turned so I had to do it again!  (Little turkey!)  Daddy had his training session Friday, and we had to do it at home again (on our own) Saturday.  Drew wanted to test us I think!  He's doing pretty well with his NG tube now and it's definitely a much improved way to give meds!!!  It's also good to know he may actually be able to gain some weight now.  We had to up his calorie intake by Monday because even with the NG tube he was still losing weight.  We are pumping him as full as we can - you should see his adorable little tummy after his "meals!"  I'm hoping for a nice plump baby now!

Thursday the doctor decided to take him off one of the anti-seizure meds as we think it may be borrowing trouble - Drew is having calcium deposits in his urine which could lead to kidney stones so we wanted to cut that med off asap.  Finished that Monday.  We also cut off the iron, so he's now down to 7 meds.

Drew went for his liver biopsy Friday and the doctor doing the procedure told us he thought he would only need about 2 - 3 small plugs of his liver.  They ended up taking 9 plugs of his liver and it took a bit longer than expected.  He was sore for about 36 hours afterwards, but he appears to be ok.  They are now sending pieces of Drew to Toronto, Edmonton and Europe for testing - he will be well-travelled without setting foot on a plane!  We will not likely hear the results for at least a month and possibly up to 9 months (groan).  

Sunday night Drew's NG tube gave us a bit of a challenge... he had just gone to sleep and we were trying to give him some Melatonin in an effort to help him (he often wakes from his seizures and has a hard time going back to sleep - this has helped quite a bit... thankfully!) and his NG tube became plugged.  We tried all the typical methods one would use to unplug the blockage and were about out of options (apart from pulling it and reinserting it... on a sleeping baby...) when one of the nurses called in the reserves.  Nurse Dave came in with Coke.  I watched skeptically, while thinking, "You are giving my child what?  Caffeine AND Sugar?  At 11:00 p.m.?  Who's going to stay up all night with this kid!?!"  After watching him pump the syringe attached to the tube with all his might (fingers going white) all of a sudden - it worked!  Then he turned to me and said, "It's ok, he only got 5 mls of Coke..."  Last thing I was thinking about at that point!  I have since learned that this method can work due to the carbonation and that it would be wise to keep club soda on hand (don't want to have to put something more potent in the tube!  I can only imagine how he would do on Mountain Dew...).

They let us out Monday and we have been trying to figure out how to balance life for the last couple days.  Obviously, due to the delay in this post, there hasn't been much time for anything other than survival!  I have to admit, I'm not sure how I am going to do this without another person here with me to help during the day.  Mom has been here this week and she is a lifesaver.  I feel like I go from meds to NG to pumping to cleaning supplies to trying to get Drew to eat and then back to the beginning again all day long!  And then there's a very busy 3 1/2 year old!  I have likened myself to Dory from Finding Nemo alot lately - "Just keep going, just keep going, just keep going."  Don't stop to think, just keep going!

I have to thank Roberta and God the most though for the thing that's really keeping me going right now - from the verse in Matthew 6 that talks about not worrying about tomorrow for today has enough troubles of its own.  Roberta mentioned that perhaps that's because God has only prepared me for today and not tomorrow - he will prepare me for tomorrow later so I ought not to try to deal with it until I'm there.  That makes today a little easier.

Prayer updates:

Thankfulness for Drew attempting to use his left arm and leg occasionally - please continue on this one!

Thankfulness for the success of his biopsy and prayers for those working with his little liver pieces.

Prayer for the new anti-seizure med we have started that it might actually work.

Prayer that God will increase our faith in the way He can work in Drew's life!

Thankfulness for the support we have been shown in so many ways.

They want Drew to go back where?

Family fun

We have got to stop going to the hospital to see Dr. Kirton!  Ok, maybe he's not the bad guy, but we are beginning to see a trend here.  Two outpatient visits (out of two) and Drew's back in the hospital each time!

Drew has had a busy week of appointments.  Monday he saw a chiropractor for an assessment and to see if we could get some input on good methods to use to get him using his left side again.  Our chiropractor consulted with another one on staff and they are getting in touch with some clinics in the States to see if they have any good suggestions so we should hear back next week.

Tuesday he saw the infant services team (therapists) and we got our homework for the week. He was less than thrilled to be at the hospital, and was unwilling to share one of those adorable smiles with his therapist for the entire hour (if anyone doubts his strong will that and the way he takes meds would make me beg to differ!).  We did get some good tips though and the speech therapist was very pleased with his vocalizations and mouth movements.  A+ Drew!

Wednesday we were off to see Dr. Kirton, his neurologist and primary specialist.  Drew has lost a little more weight and is down to 8.3 Kg (someone should tell him that baby fat is in!).  His seizures are also stronger - we called the hospital in the middle of the night as he was having a fairly strong, more generalized seizure that lasted over an hour and a half.  Trying to think coherently to make decisions in the middle of the night is always interesting, and we may have undone any work done to teach Drew the difference between night and day!  We were turning lights on to observe him, moving him around, talking, and pretty much everything they tell you not to do if you are trying to teach a young one the difference between night and day.  He was loving it!  Anyway, with input from the dr. we decided to wait it out and come in this morning.  Dr Kirton was not surprised that Drew decided to change things up again, but he is now thinking that one of the two antiseizure meds he's on is probably not working, and it may even be causing some of the strange symptoms Drew is having.  He is also pretty sure the steroid he was on in the hopes that Drew might have an auto-immune disorder called Hashimoto's Encephalopathy is not working, and therefore that this isn't our answer.  We are going to wean off of both of these drugs in the next week (Drew will love this - the fewer the better!).

We are back to the hospital later this afternoon for the following reasons:

1) Dr. wants to observe the seizure activity again.

2) Dr. wants to boost his intake to prepare Drew for his surgery and anesthesia on Friday (if he has a mitochondrial disease we don't want to compromise his energy reserves).

3) It will be easier to get in for another EEG and a hearing test while in hospital.

4) Drew's blood is in such high demand that they want to keep him around so they can get some more.

5) They think it would be better to keep a closer eye on him following the surgery, as minor as it is. (On that note, they have decided they don't need to do the lumbar puncture right now but will wait another month or so for that to make sure the effects of the IVIG have worn off.  He will just be having a liver biopsy.)

6) The nurses miss Drew.

So... off we go again.  We are going to enjoy the day at home before they reel us back in again as much as possible!

Prayer updates:

Please pray for his left side to show some improvement in strength. 

Please pray that Peyton will take this news ok. 

Thank you for all your prayers!

Life at home

     Doting Mother!

Our Drew

Grandad Staples and Drew

Daddy and Drew

Papa and Drew - Finally got those glasses!

The last few days have been so wonderful!  Sure, Drew is still far from normal, and as I keep saying, is more work than a newborn but I will take it!  He's HOME!  It's so good to be in our own environment, able to go for walks, eat at home, sit out on the deck, get nibbled on by mosquitos,and to listen to the fans trying to cool the house and the sounds of city living rather than the sounds of a hospital room.  Drew seems quite content these days, usually only crying when he has to take one of the nine medicines he has to take, or when he is bothered by a stronger seizure.  He is doing pretty well from that standpoint I guess - he is not having "constant" seizures for the last couple days.  He goes for periods of time where he might not have any, or will have them only very faintly in his left arm, but we seem to have traded those for some that are quite strong and that render him very weak afterwards.  In spite of weakness that makes him a lot like carrying an 18 pound newborn he is still trying to get to toys and objects around him (usually those out of reach, like pictures on the wall, glasses or earrings, and anything his brother has).  

The main project lately has been trying to convince him that eating is good... and that gaining weight would be even better.  Any ideas on how to get an 11 month old to open his mouth for food willingly???  We have tried making him laugh and stuffing food in to plying him with toys he likes to chew on to sneak bites in around, as well as trying to give him any food we think he might like, but he must be thinking that this is the ONE area HE can control and he wants to show us just how strong he really is (he wins by a long stretch!).  We had him in to the pediatrician Friday to check out a possible infection (no news on that yet) and we weighed him while there - he was 8.57 kg with clothes and diaper on (18.14 lbs for those needing a calculator to get that one).  That means he is not moving on an upward curve right now...  he's burning too many calories in a day to keep up with the intake (which is nonstop milk - again likening him to a heavy newborn!).  Anyway, we sat him down in the baby throne at the table again tonight to try once more and after many unsuccessful attempts Mommy walked by eating a cookie and he got more animated than he had been all day.  He gained himself a chocolate chip cookie with this display and when all was said and done there were only crumbs left!  Can one survive on cookies alone?  Maybe I can sneak things into his cookies???  Of course, there's a pretty strong chance given his history, that he won't like them tomorrow though so I guess I'll have to wait and see.  Predictability is highly overrated these days.

Prayers for the week:

Drew has a liver biopsy and lumbar puncture Friday.

Pray Drew will start eating willingly and that Mom can figure out how to help him do so!

Pray Drew will recover some of his strength and use of his left side this week.

Thank you so much - we covet each prayer!

Home again, Home again... Jiggety Jig!

So Drew's not a fat pig as the rhyme goes, but he's eating and doing fairly well, so we are breaking him out of the hospital again!  (Away from the ironically pink and white striped pajamas they have for the wee ones there!)

His big brother is so excited to have us all home again!  He came up to Jordan and I in the kitchen and said, "I love you Mom.  I love you Dad.  I'm so glad to have you both again!"  Speaking of the phrases that make us smile lately, here's some of the latest and greatest from Peyton:

During bedtime snuggles ("nuggles" in Peyton-speak) with Mommy, "Mommy, you're beautiful.  Long pause.... (Mommy was basking in the moment) ... Grandma Marnie's beautiful.  Grammy Patti's beautiful.  Girls are beautiful.  But Daddy's not beautiful.  Daddy's handsome."

During bedtime prayers with Grandma while Drew and Mommy at hospital, "God, please make Drew better and please let Mommy come home (at which point he burst into tears - oh my aching heart!)."

Riding in the car with Grandma Marnie, "God, make Drew better so Drew and Mommy can come home please?"

Riding in the car with Drew and Lincoln, "Mommy, Drew is having one of his big shakes!" to which Mommy responded, "Ok, just tell him he'll be ok and help him."  He proceeded to pat Drew on the leg and make silly faces at him to try to get him to laugh, while telling him he would be ok.  (What an amazing big brother!)

Peyton's pronunciation of "hospital" = hostibal.

During a breakdown while washing hands with Mommy before a much-needed nap for Peyton, "Mommy, I miss you so much. sob sob I just miss you so much!"  Mommy said, "But I'm right here."  Peyton responded, "But you were gone for so long!"  Boy they are amazing.  As brave and strong as Peyton has been and as much as we have tried to maintain some "normalcy" for him, he is still just a kid who needs a lot of loving!  We are so blessed by these two boys!

Third time a charm?

We are back again.  Drew was discharged on June 28 (it just occurred to me that we were discharged the first time on May 28 - what's up with 28?) and did great at home for the first couple days.  At the doctor's orders we dropped the level of one of his meds on Monday the 30th though and that didn't seem to agree with him.  By Wednesday he was seizing more and his left eye and cheek were also included this time.  He couldn't eat/drink because of this so back we went.  This hospital visit this time was less about tests and more about getting his weight and appetite back up, and about getting the seizures under control.  We would have to admit that the newest addition to the seizures goes well with Drew's charming personality as much as we hated to see it - the way his left eye was going it looked like he was intentionally winking at you, and the left corner of his mouth would twitch up giving him a "cute" little smirk.  (We have learned quickly to look for the bright side of things!)  

On Monday, July 7th we started giving Drew Melatonin to help him sleep.  The seizures have likely inflamed his brain so much that it may be affecting his sleep and appetite according to the doctor.  Others would like to think he just has so much fun playing with us that he thinks he might miss something if he sleeps at night!  (He was awake for over 5 hours two nights in a row! - Mom feels like she has a newborn again!)  It has helped alot and now he's back to almost normal sleep patterns - thank goodness!

On Tuesday the doctor decided we should try him on Prednisone (a steroid) on the (very) off chance that he has an autoimmune disorder.  One of the results of the blood tests came back showing elevated antibodies which could indicate a disorder like that or it could just be the result of the IVIG process they did a couple weeks ago.  The best way to find out is to do a trial of this drug for two weeks.  It is a mixed bag as it will increase his appetite but could also make him more susceptible to illness (do they realize he has a 3 year old brother who dotes on him???).  We are trying not to get our hopes up that it could be this, but if it was at least we would have a treatment option and it wouldn't be so uncommon.  (We have to admit that we have been praying that it will be this.)  He will donate yet some more blood to check this out in August likely, and they may try to do a C-Spine at the same time to confirm one way or the other (if the antibodies are elevated in the blood AND the spinal fluid it would answer whether it is an autoimmune disorder or not).

Thursday was a good day for Drew.  We had a prayer session for him that morning and whether it was that or whether it was a (corresponding?) raise in one of his meds and he liked that or whether he is responding to the steroid we don't know, but we do know he is seizing less and seems more alert.  His twitch that has been constant to this point is less constant, actually giving him moments of reprieve now and his face is not seizing unless he has a more intense seizure (those are coming and going now, lasting for around a minute and involve more body parts that just his arm or leg - these seem to bother him a bit more).  We think the nurses were a bit sad to see the winking and smirking go, but we'll take eating over smirking these days!  

They think it might be what?

We quickly learned that Drew wanted to keep us on our toes and that he liked to change things up every weekend - his seizures would frequently stay the same for about a week, but almost every weekend he has presented something new for the doctors to marvel at.  Given the way he's changing and not responding to medication, the doctors are starting to introduce the idea that Drew may have a metabolic disorder, or a mitochondrial disease.  As such, they are going to do extensive testing to try to identify what we might be dealing with.

June 6 - Drew went under the knife today for a minor muscle/skin biopsy of his right leg.  It was a very quick procedure and we think the anesthetic bothered him more than the surgery - he complained only occasionally today and then seemed to be over it after that.  Amazing!

June 8 - He started having seizures on his right side.  This added a new dimension to play - with both hands jerking all the time.  He persisted though, and was mostly in a good mood, still charming nurses and trying not to throw toys over both shoulders.

When Drew started seizing on both sides the option of surgery was eliminated as they can not remove the motor cortex on both sides of his brain.  These changes look more suggestive of a mitochondrial disease, though we found out this week that these diseases are very rare, each one seen is different, they do not have a cure and the current method of treatment is vitamin therapy.  We are holding onto the idea that there is a very wide range of severity and many people can live full lives even with a diagnosed mitochondrial disease.

June 9 - We were introduced to our new neurologist, Dr. Adam Kirton.  He immediately ordered a whole new slew of tests and it was a busy week for Drew.  He had another EEG done, he donated blood for bloodwork 3 of 5 days (unwillingly as it may have been) , he sat still for a VEP and SSEP test (vision and somatosensory), a stomach/chest ultrasound (to eliminate cancer as a cause), another MRI (which he slept through!!! must have been a God thing), and yet another vision test, and willingly endured a CT scan.  We had no idea life could be so busy at the hospital!  Add to that about 3 - 2 hour naps for Drew a day, and the days went quickly!

June 16 - Drew is getting to know the EEG techs pretty well now.  As much as he doesn't like what they do, he seems to like the ladies that keep gluing the leads onto his head.  Maybe it's the glue they use!  He had another EEG done Monday morning and more bloodwork.  They have collected a pretty good amount by now - we keep wondering how he's keeping up!

June 22 - They needed a hair sample for another test so Drew had his first haircut.  They lost that sample though so he also had his second hair cut this week!  The second one was much more obvious than the first as it was took a chunk of hair right out of his beautiful reddish blond topnotch.  (That one made Mommy cry!)  The hair test came back negative, but they refused to give the hair back!  : )

June 24 - We tried IVIG (Intravenous Immunoglobulin) in the hopes that it might reduce any inflammation in his brain that might be causing the seizures, but that was not successful either.  He did get a little irritated with having to be hooked up to IV machines again for a couple days though, and Mommy tried her best not to get too tangled up in the cords!  We didn't pull any out on accident this time so in a way we considered it a success!!

June 27 - We wanted to see how big Drew's little heart was so they did an ECG of his heart today - well ok, really that's probably not what they were looking for, but Mommy was!  They said in addition to the hole and leaky valve they found in his heart while in ICU his heart appeared a bit enlarged, but they again weren't really concerned about his heart and we will be followed outpatient for that.  There may be a connection between what they see in his heart and a mitochondrial disease as it could affect the energy organs of the body.  We won't know the answers for a while though.

June 28 - Let's go home again!  Drew is still seizing, though it's mostly contained to the left side of his body at this point.  All the tests done to this point have been suggestive of a mitochondrial disease but not conclusive and the rest of the results could be months in coming yet so they are going to discharge Drew with the plan to follow him as an outpatient.  We will continue to play with his meds to try to get the seizures under control, but we can do that from home.  He is eager to be at home, and his big brother is even more excited to have Mommy and Drew at home so home we go!

(Peyton prayed this week that Drew would get better and that Mommy could come home from the "hostibal".  Mommy has been staying at the hospital for the purpose of nursing Drew and taking him for all his tests, and has been trying to spend time playing with Peyton every day, but life is far from normal right now for him!  He's been so brave and patient - we couldn't ask for more!)

Back again

May 28th - Kari had to go back to the hospital to pick up something she forgot and took Grandma Marnie and Drew with her.  When they arrived home Drew was enjoying a well-deserved nap in the back seat.  When Mommy went to take him out she noticed his left arm flopping about gently.... Oh dear.  Back to the hospital.

After a few more medicine changes and two overnight EEG sessions to measure his brainwave activity all we knew is that Drew was having seizures that were constant and nothing we were trying was working to stop them.  It affected mainly his left arm, but occasionally his left leg.  The dr. said Drew has a condition called EPC (Epilepsia Partialis Continua) - simple partial seizures of different body parts that don't stop, and don't respond well to medication options.  Well, we grieved over that too, that we might have a child who would have constant seizures on his left arm, but were hopeful at that time that maybe surgery or some medication we hadn't yet tried could help, or even that we could help him learn to live with it.  The primary disconcerting issue at this point was the thought that EPC was only a symptom of something else... now what were we talking about?

Drew did ok for a week, still seizing but learning how to work with a shaking arm.  After the first few days, he starting trying to hold toys again in spite of the fact that occasionally he would throw toys over his other shoulder and that when trying to hold something to his mouth he frequently overshot and clunked his cheek.  He was such a good sport that he didn't even seem too annoyed and spent a good part of his days charming nurses and doctors, playing peek-a-boo with them and giving fives.  He figured out how to pull his blanket up over his face when someone was coming into his room and then peeked out through the holes to figure out if he wanted to see them or not.  What a character, and definitely a real trooper.  He had doctors and nurses coming in just to check up on him and say hello.  

Our journey to this date

We spent an absolutely wonderful two weeks in Florida with our extended family in mid-April, loving every minute.  We spent time on the beaches, enjoyed some theme park craziness, played lots of games, and basked in the warm sun while it snowed in Calgary.  In the midst of it, Drew was trying to learn to sit at 8 months, still not doing it on his own; however, he had learned how to roll from back to front while there so we were not concerned.  He has just been so mellow and laid back from the very beginning that we assumed he was just waiting for the right time and letting Peyton entertain him.  When we got back we visited his pediatrician to get this checked out for sure and she agreed that he was likely just biding his time, and wasn't concerned.  That was about May 10th.  On May 14th we spent a delightful day at the Zorn's ranch with our Moms & Tots group and Drew was just one of the happy kids, but didn't really want to eat all day.  Mom chalked it up to teething...

1:45 a.m. Drew woke Mom up screaming, which she thought might be attributable to teething, but when she checked him, he was having a seizure.  Off we went on a midnight ride via ambulance to the Alberta Children's Hospital.  It took the ER staff an hour and a half to get it under control, but not before they gave him enough medicine to shut even his respiratory system down.  He was on a ventilator in addition to enough meds to make us sleep for a good week for a few days, and had more tests run in 2 days than we could believe.  The only outcome?  Your child had a seizure and we aren't sure why.  We want to do some more tests and watch him for a while.  We grieved at that point over the loss of innocence - life with a child who could have a seizure anytime would never be the same. 

Over the first week we were there Drew had an MRI, CAT scan, EEG, EKG, more bloodwork than we knew could be possible (thought he might run out!), and many other tests run, all with no immediate answers, although they did serve to eliminate many of the things that it could have been.

After two weeks of watching, waiting, trying to sleep amidst beeps and nurses checking in and of course of hospital food, we were only too glad to be discharged on Tuesday, May 27th.  Drew seemed good, and had not had any other seizures since the major one.  He seemed to be responding well to his two anti-seizure medicines and was sent home to watch and wait some more, and with a long list of things to do to practice strengthening his core muscles.  He seemed so happy to be home, and thoroughly enjoyed seeing big brother Peyton!

Where do we begin?

It may be best said of our experience as parents lately as Alfred Lord Tennyson said it, 

I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

We don't know what the future holds we only know it may be different, and even if it will not be significantly different, we will go forward changed to the deepest parts.  

We thought about blogging for a long time, but usually decided that the challenges of balancing life with two children was enough for the time being.  It only took Kari about 8 months to feel like she could do the two child thing and feel like she actually had energy left at the end of the day!  Of course, you know what happens when you feel like you have things under control... (ought to have learned the lesson by now!).  We would like to keep everyone updated on Drew's condition so we will try to keep this current.  At the same time, we will try to share the smiles that enter our days as well.  We still have amazing joy and many laughs in the midst of this experience, and are so thankful for everyone and everything that has contributed to our sanity!  Thank you!  We love you all so very much, and even more we love and thank God for His peace and guidance throughout this.