Wednesday, 26 September 2012

Hospital Reunion

What do you get when you have:
- a fever
- vomiting water-like substance
- high heart rate
- seizures
- laboured breathing
- cold legs and feet (that wouldn't warm up being wrapped in blankets, unless the blankets were very warm)?

      That's what Paul and I faced on Monday night.  We knew things weren't well, but did we really want to run to emerg and expose Jacob to a whole host of other bugs?! We had a nurse come to the house and assess him, but she was most comfortable with us going to London to have the doctors look over him.  So off to London Paul and I went.
      The conclusion was that Jacob has a bacterial pneumonia and possibly a viral infection.  We are still waiting for results from the viral swab.  The viral infection is probably just a common cold.  This reinforces that we must be vigilant with only having healthy people in our house.  It's so easy to think 'oh, I just have a slight cough,' but with Jacob there is no such thing as a common cold!  We've thought that many times!  He gets seriously sick, extremely quick. 
      Currently, Jacob seems to be stable, and gaining strength, but still with continued concern.  His lungs are still full!!  After many hours of chest physio, his lungs have made no great improvement.  It seems to us that his brain is having a harder time signalling him to cough :(  It's like he will take the breath in to cough, then his brain stops it.  He needs to get what's in his lungs out!!  This may be a long recovery road again. 
     We've met interesting people with interesting stories!  I LOVE hearing other parents stories.  It shows us that we do not have it the roughest, and we're not the only people with a sick child!!  Above all, we know that God has never made one mistake dealing with us, and he loving gives us what we need.  That's a continual comfort!  Many people do not have that comfort. 
    One interesting story was tonight after supper.  We were walking to the hospital from the Ronald McDonald house with another couple.  They quickly got talking about faith.  The father went on to say that on the way here, they saw a sign which said, 'Is God your spare tire, or your steering wheel.'  I'm not totally sure about the saying, but I know what they were meaning.   It really put things in perspective again.  Am I submissively putting God first? Am I following His will?  Or, am I only needing God when things get rough?  That dad, with that one sentence has sure got me thinking!! 

Thursday, 20 September 2012

Happy Days

     We are currently experiencing high moments with our little man :) He is overall, quite content. He's sleeping deeper at night, and actually will nap during the day (even if it's for 30 minutes, it's still a nap!) He's tolerating his feeds like a champ. No more vomiting, retching or gagging!! This is huge! All his receiving blankets are staying nicely folded in his room. We haven't experienced this in months.  I'm enjoying it immensely!

      Considering Jacob's condition, we're figuring things will change, but for now, we are feasting in his progress! We never thought we'd see days like this again.

     I truthfully feel that I don't deserve this time with Jacob. I've done nothing to deserve this! I've worried, wrongfully. I've complained, unjustifiably. I've been dejected, faithlessly. Yet, God in His abounding mercy is providing our family with happy days! Days in which we will always cherish!!

     Here is our most recent family picture. Special indeed! As extended families last June, we quickly had family pictures so we could have the memories of Jacob being part of the family captured on camera. Now, 15 months later, we are still capturing precious memories!!   Amazing.


Monday, 17 September 2012

EEG Results

At long last we received the results from Jacob's EEG. Lisa, our palliative care nurse was the one to break the news, 'Jacob's EEG came back with spikes (seizures.)' Silence. Deep thoughts. Finally I was able to speak, 'That's what we were expecting but...' Silence. 'Thanks so much for the information, Lisa.' That pretty much ended our call.  That’s all I needed to know...for a while. Lisa told me last Tuesday, but I had to sort out that info over the next week.

How to make sense of it? How could our boy be having seizures, but yet we see such positive signs? How could his brain be regressing, yet we see him progressing?  Is his brain really not able to stop those seizures any more?   Why didn't we see seizure before, considering one of the symtoms of PCH2 is seizure disorder?  I'm thankful that we didn't though!!

My mom came with me last Friday to see our paediatrician to talk about the results in detail. He explained that Jacob had increased irregular brain activity, leading to seizures. Indeed a sign of the brain deteriorating.  He prescribed a medication because last week he also had 2 seizures in one night. The first one was 40 minutes; the next was 1 hour 20 minutes. Jacob's history with seizure medications hasn't been a rosy one, so we'll see what happens with this med. It will take a couple weeks until he is at the full dose, so we won't have an accurate reading until then. Hopefully his body will be freed from the exhaustion and confusion which seizures produce.

Becky, our caring, sincere and thoughtful case manager called today to find out the results from our Dr Kerr trip on Friday. She is one who has had many ears filled with my wonderings, concerns, and questions. I love her patience and humor - when humor is needed:) She opened my eyes today to the reality that Jacob continues to go against the odds. He truly is continuing to write his own unique story. He does things which really perplex the medical field. He is a growing wonder.

On a very positive note, Jacob's feeds have been changed (for about the 27th time:) but this time it really seems to be in his favor. He's back up to being fed for 18 hours/day. This proves to be more of a challenge for us, because we are much more limited with him hooked up to a pump.  His concentration is greatly reduced, which seems to work much better for him. He's hardly gagging/retching/vomiting now.  For weeks, it was so bad, he could vomit every 5 minutes for hours on end :( Poor boy.  With Jacob's condition, things continually change, but for the time being we are going to feast on him feeding well.  The saying stands true 'Every cloud has a silver lining.' 


Wednesday, 12 September 2012

Nurse Jackie

Last January, one of our night nurses was shifting her work slightly, so we anticipated having her loving care over Jacob less in the future. Little did we know that the beginning of February she would suffer from a serious health issue, and would never be able to work (or play:) ) with Jacob again.

Yesterday, I was privileged to visit her at her home, with Jacob. She couldn't believe how long he has gotten and how much red hair he has. He was still fairly bald in January.

She was thrilled to actually be able to 'play' with him again. If I had to describe Jackie in one word, it would be 'energy.' She was abounding in energy for special needs children. She taught us many unique ways to care for Jacob. With so many years experience dealing with special needs, she sure came with a wealth of knowledge! When Jacob was awake in the night, she would sing non-stop to him. She also figured out that while doing range of motion he loves music. Suddenly, range of motion was no longer a drag - he actually enjoyed it! To this day, when I'm doing range of motion, I'm singing and trying to make it fun for him.   He usually responds positively.

I found it most amazing yesterday how Jacob responded to Jackie. He was full of smiles, coos and giggles!!    Many, many times he would give her big smiles.  Several times it looked like he was trying to focus on her.  For Jackie it was heart warming because in January he wasn't smiling, cooing or giggling yet.  Seeing him respond in such a positive way, makes me miss her and her care all that much more. She has been given an extra talent when it comes to dealing with special needs children.

Providentially God saw fit to have her come into our lives.  Considering that, I'm feeling so thankful!

Jackie playing 'Round and round the garden.'

Playing with his new ball from Jackie. 
She thought it would be best for Jacob to have a soft ball, considering he has a three year old brother!  Good thinking!! 

Monday, 10 September 2012

This and That

     We've been privileged to celebrate 2 anniversaries this summer.  My parents celebrated their 40th in July, and Paul's Opa and Oma celebrated their 60th last week.  Both are indeed great blessings!  Overall health and strength have been granted them thus far.  When I reflect on these occasions, I'm amazed at God's dealings with people.  His plan is perfect.  So many times I've thought that Jacob's life is coming to a close, but then we are able to celebrate yet another special occasion.  Even though Jacob is unaware of the occasion or situation, it is a blessing that we can have Jacob there with us.  Psalm 31:15 comes to mind -'My times are in thy hand.'  God's ways are higher than our ways.

Opa and Oma Boesterd with their great grandchildren
Opa and Oma Schmidt with their 12 grandchildren
Maria was our Sunday night nurse.  She was a quiet, thorough and compassionate nurse.  It was always a nice way to end our Sundays.  Her last shift was this past weekend, as she has schooling which is conflicting with her shift nursing:(  It was so hard to see her go.  She loved Jacob, and it came through every time she came.  She would come up with wonderful excuses just to cuddle him:)
We gave her a thank you card, which she said she wouldn't read until she got home, because it's not good to cry and drive.  I'm kinda thankful, because if she would've started crying, I would've followed suit, really easily.  Another chapter is closed.  Another tough experience!  Two in one week.  Paul keeps reminding me that God can provide more great nurses.  Good point, but hard to see sometimes. 

Maria cuddling a very content Jacob

      This past Saturday I was privileged to spend a day golfing with my 2 sisters.   It was part of the Oxford Reformed Christian School fund raising golf tournament.  We sure are no pros, but if there was a medal for the greatest time - I think we would've won!  It was great to get out and do something fun, something that is stress free (even better that our score was 'decent'.)  I came home very refreshed.  Sorry for no pictures, but I was unsure of the weather, so I didn't want to have my camera soaked.   Thankfully though, once we were golfing, we didn't have a drop of rain!!

     We are still awaiting the results from Jacob's EEG.  So frustrating.  It would be nice to know what the results are, so we can act accordingly.

     Stacey from the CNIB (Canadian National Institute for the Blind) has been working with Jacob over the past 9 months or so.  Stacey specializes in children under the age of 6, so she comes with a wealth of knowledge with kids Jacob's age.  One of the 'toys' she's let us borrow for the month is the 'little room.'  Typically when kids are in the little room, they feel secure and enjoy the environment.  Jacob moves his arms and legs a lot once he's in there, which typically he doesn't move often.  The object of the little room is to have repeated movements.  Hopefully with hitting the same toy, he'll get the connection that it is a positive experience to move.  We've worked with it for a bit and have adjusted the toys to suit his preference.  Anything too noisy or high pitched, he gets scared.  It is a joy to be able to place him somewhere and know he'll enjoy himself.  Not every time does it work, but most often he'll settle down for about 15-30 minutes.

Jacob enjoying his little room



Monday, 3 September 2012

She Left

     The day has finally arrived.  One we were preparing for, for several weeks.  After 14 months, our primary nurse, Kim, has left for 2 new jobs in London.  I understand her decision totally, but for our family, this is a tough pill to swallow!   She has been hired at the Children's hospital, which has been a dream she's had a long while.  I'm really hoping that we don't end up in the hospital any time soon, but if we do, it would be wonderful to have Kim's loving, gentle touch caring for our little boy. 
     Kim was a nurse who went the extra mile.  She absolutely loved Jacob - that showed every time she was here.   She was graced with compassion.   If any nurse had Jacob figured out, Kim was the one!  She understood his different cries, moans, groans and movements. 

      One fun thing about Kim was that she was a farmer:)  She grew up on a farm, so from the get go, we had something in common.  She loves her cows! 

      Kim's sense of humour made us all laugh.  Our kids grew to love Kim.  Through the summer, they haven't seen much of her, because they slept in most mornings.  During the last school year, quite often they would wake up and smiley (and yes, sometimes super pesty) Kim would greet them.  The girls LOVED her stories!!  So often during a day, the girls would suddenly remember a story she told them about when she was a girl, and they would start laughing.  I'm glad she wasn't one of my girls;)  She had 4 sisters, and I believe they really made things 'interesting' for their parents! 

     Kim has seen our high points, but also our low points!  She's seen us struggle, but she's also seen us rejoice.  She's been able to give advice, and she's had times when she was silent - no words were needed.   She's been by us when we thought we were going to lose our little boy, but she's also been by us when we were seeing those first smiles:)  She's also been privileged to see him giggle - just for her.  Special moments! 

     One area that Kim excelled in was the ability to be supportive to Paul and me.  We could tell that she understood what we were going through.  She wasn't just here for Jacob, but was here for the whole family.  She was unique in that way.  We'll miss that personal touch!!     

     A note was left on the table for Jacob, and one for the rest of us.  I'm glad she told us NOT to read them until she was gone.  There weren't too many dry eyes ready those letters.  We've known that it wasn't easy for her to go, but the letters proved that she had her heart in her work here.  We've been well taken care of with her here. 

      Paul keeps saying that God has been so gracious to bring a nurse like Kim into our lives.   I agree totally, but yet, to have a fantastic nurse, makes the departing that much more difficult.