Saturday, 23 November 2013

One Year Anniversary

Today marks the one year anniversary of a great milestone.  The first thing that I heard out of Breanne's mouth this morning was: this day last year you came home from the hospital with Jacob.  What an observation.  That was also our last hospital discharge for a pneumonia.  Wow.  2013 has been a year of ups and downs, but respiratory wise, it's been a great year overall.  I'm feeling blessed, thankful and humbled to God for his gracious and patient dealings with us, as a family. 
Considering last year, leading up to November, Jacob was hospitalized every 6 - 12 weeks.  To go 52 weeks with no hospitalization is simply amazing. (He did have one bought of pneumonia in February, but we were able to treat him at home.)  Talk about a positive change overall.  :)  I truly feel for those families who call the hospital their second home.  That lifestyle is hard on the child, parents and siblings!!  Life is so much easier for everyone involved to be home!  Going though last year's November pictures, confirmed that very thought!!
Dear Lisa giving advice and encouraging us, once again.  What a blessing it is to have her still involved in Jacob's care!!
Sporting the nasal prongs.  He's grown so much in one year! 
Keeping Caleb entertained at the hospital was a tall tall order!!  Those eyes say it all :)  I love that boy, even though he was such a challenge at the hospital!
Sheryl was deep in thought.  Many times words would not be spoken.  The words weren't needed!  We understood each other in the silence. 

This week has lead to more talks with the doctors to figure out Jacob's irritability.  He didn't have the best admission at respite, like we were all hoping for.  He was quite irritable for the first few days at home also, but yesterday, he had a great day.  Bizarre!! I sure can't explain it!!  We have a new medication that we can use, but I think that may be put on hold, if he's going to be so content.  YEAH.  We have all enjoyed a couple easier days again, including the night nurses. 

Wednesday, 13 November 2013

Some Answers

Wow, talk about appointments all in one week!!  Today alone were three.  And the worst of all...the last one took three hours :(  What a lengthy process. 

This morning was another reminder that it's not what you know; it's who you know (and who they know.)  I had called the ortho clinic with little success.  Our physiotherapist hears that and gets on the phone and a couple of phone calls later, an appointment was booked for 12 noon today.  Off we went.  After a LONG process, Jacob was seen by the doctor, who said that Jacob needed a soft splint cast.  He was afraid of skin break down with the fibre glass cast.  The removal of the cast did show some moderate skin irritation.  I couldn't believe how swollen his leg still was!  The doctor explained that some was still swelling, and some was actually extra bone growth :)  The bone growth is a good thing. 

I'm hoping that this solves his extreme irritability issues.  He may be fussy for the first day or so, as he adjusts to the new splint. 

The respite home where he is now has worked with children with broken bones more often, so I'm thankful they can have their skilled eyes on him for a few days.  They might be able to help us out with handling him too.

Thank you for your support during the past couple weeks.  Your prayers have been most appreciated!  It has been a trying time for our whole family, but we feel that God has a purpose for all things, so we submit to His ways. 
His over-sized leg , and his not so over-sized leg.

Sporting his new splint.

Monday, 11 November 2013

Prayer Needed

We have an important appointment tomorrow with our paediatrician.  Since the cast change, Jacob's been FUSSY.  Saturday was a good day, for Marije, but other than that, it's been a struggle to say the least.  Morphine has been added once again to his medication regime :(  We need to find out what's causing the extreme irritability, sweating and grinding of his teeth.  Dr. Kerr knows Jacob's baseline (his norm) extremely well, so hopefully he can connect the dots to obtain a clear picture.

At the appointment we had today, Jacob was not happy!  The physiotherapist is concerned the cast itself may be causing issues.  We'll see what Dr. Kerr says.  It can be difficult to diagnose a problem with kids that are non-verbal.

Please pray for Dr. Kerr to be given clarity in finding the root of the problem!!  We've witnessed it recently how God can close the eyes to the doctor.  That said, we've also witnessed the doctors eyes being opened to a clear and concise conclusion! May that be the way tomorrow!!

Thursday, 7 November 2013

New Cast - New Look

The first cast - all decorated up :)  Mostly by his loving nurses!!
Well, the morning of November 7th came and went.  It was a quiet morning around the house.  Many thoughts to digest.  Jacob was to visit the ortho clinic to be assessed regarding his broken leg.  My mom was gracious enough to accompany Jacob and me (and also because I had several people in the medical field that said it was ridiculous for me to tackle something like that with no help.) 

Thankfully I knew the procedures for such appointments, as Breanne had a broken arm 4 years ago.  The fact of knowing the basics really helped, but adding Jacob to the situation made the whole event very different from Breanne's appointments.   My biggest fear was that the sensory experience of the vibrating/noisy saw would put him into a seizure.  I was prepared with meds. 

Jacob first had x rays taken.  That went without incident.  We were seen by the doctor who wanted to straighten his leg.  OUCH!  I knew that would hurt BAD.  The doctor we had, has worked on patients like Jacob for many years, so it was reassuring to have his skilled hands and his knowledge working on our boy.  I was able to give him his sleeping meds 15 minutes before they worked on his leg.  He had slight movements when the lady was taking the cast off, but other than he slept through that ordeal (good thing for head phones.)  Once the doctor came and started working on his leg,  he woke up and started crying hard.  His whole body was vibrating.  My mother heart was hurting just as much as Jacob was hurting physically.  I just kept telling myself that this is for Jacob's betterment.  The straighter the leg, the better the healing.  Once they were done with the cast, he settled back down fairly quickly.  As I admired the camo cast, I felt satisfied that his leg was in a better position than it was before and he could sport a camo cast.  Paul was quite pleased with my pick :) 

I can't believe how huge those things were on his little head!!!

Yeah - his camo cast :)  :)

Out like a light...

Jacob slept beautifully the whole way home and for several hours once we got home.  I guess the medication worked to its full potential.
Amazingly, he's handled the transition quite well.  Pain medication is still given as needed, but not often.

Tomorrow, the Paul and I, with the 3 kids plan to go away for a couple days.  Marije has offered her services to stay with Jacob for the two days.  This comes with mixed emotions to say the least.  This is a huge undertaking for her!!  She is such a blessing, to say the very least!!  She knows my mom is on standby if she needs help.  To leave Jacob after all we've been through in the last couple weeks, a break will be beneficial for all!!  As Marije was leaving tonight, after giving her some instructions, and voicing our concerns, she concludes that we have to leave this in God's hands too.  That is exactly what I needed to hear.  I think I'll be going with a bit more ease, keeping that in focus.


Monday, 4 November 2013

Change of Lifestyle

     Since Jacob's fractured thigh, things have been much more different around the home-front.

1. More irritability.  This is hard to know if it's pain from the fracture or just that Jacob's annoyed with a foreign object on his leg.  With MUCH thankfulness, he's off the morphine though!  His screaming cry has left him again :) 

2. More help.  Finally on the weekend I mastered how to change a dirty diaper by myself.  At the beginning, it took 3 of us.  It's still tricky - just trying to keep his leg supported at all times.  One small wrong move and we have much bigger problems.  With more time needed for every aspect of his care, extra help is beneficial.

3. More appointments.  We could be seeing the ortho clinic quite a few times before this whole process is over.  Thankfully our case manager and social worker went up to bat for us and Jacob is getting classified as an oncology patient (kept more isolation, rather than waiting in a waiting room.)  One of my biggest fears was that we would wait a long time in a waiting room with people coughing and sneezing, sending germs our way.  That's the last thing we need for Jacob.  Our first appointment is on Wednesday morning, so our thoughts and hopes are that Jacob will be sporting a much lighter, fibre-glass cast.  I haven't decided what colour yet, unless they have camo, then the decision is quite easy. Wouldn't Paul like that one :)

4. Jacob will have less cuddle time with his siblings.  Caleb and Sheryl have yet to hold him.  They lace him with many kisses throughout the day, but they are too apprehensive to hold him for fear of hurting him more.

5. Compromised chest care.  Chest care has provided exceptional lung health for this little boy in the last 3/4 of a year.  Considering he can't be put into his favorite position, things get a little tricky.  It's all about adaptability (something that I can really battle with.)

6. No baths for a while :(  He loved his baths, but he's going to have to settle for sponge baths.  Hopefully he doesn't lose the sense of water and when his cast comes off, water will be a positive experience for him again.

7. Increased Physiotherapy and Occupational therapy appointments.  This is not a bad thing.  They come right to the house.  To have Mary Ellen and Kathy here is always a treat.  Their caring suggestions and thoughtful advice is greatly appreciated.

8. Less playtime.  Considering how difficult it can be to move and situate him perfectly, we actually move him as little as possible.  Much more of his time is spent in the crib :(  If he's happy, we don't move him!  We learned that quickly enough.

9. More suctioning.  We can no longer turn Jacob onto his side quickly, so we must oral suction him instead.  Our philosophy is: better out than in.  He doesn't seem to have the coordination to get rid of the phlegm when he's laying on his back, so we assist him in this regards.

10. Keeping us more dependent on the Lord.  Never have we felt it more than we need God to give wisdom to the nurses (and ourselves) how to manage this new challenge.

We sweetly feel that God has taken us out of a very dark place last week and has brought us to brighter days.  To hand it over to the Lord can be so against my nature, but it's an exceptional blessing when it's accomplished.  May His will be done.  May we be given the submission to deal with this trial every day!  He knows exactly what we need, when we need it.  

Pictures of the cast are coming...when the computer is willing to cooperate!