Well, Monday we arrived at the hospital for Jacob to undergo a 48 hour video EEG. They place the electrodes on his head like a normal EEG, but this time a video captures every movement. Also, at night he's been monitored for his oxygen. After 48 hours, we are no wiser :( He hasn't had one apnea spell yet. They've now reduced his one seizure med hoping that he'll show us something. I'm not hopeful. It reminds me of a vehicle that is having issues, you bring it to the mechanic and it works perfectly!
Jacob seems to enjoy all the attention because he's been giving the nurses plenty of smiles and giggles. At least there is something positive going on. Paul or I are called to be with Jacob all day and night, so it makes for an extremely tiring stay! I long to be at home. We originally told our kids they could come home on Wednesday after school, but they had the news that that wouldn't be the case. That hurts the mother heart, even though I know they are very well cared for!!
Hopefully something is revealed tonight, so we can head home tomorrow!!!
Wednesday, 26 February 2014
Tuesday, 11 February 2014
Smiles, Smiles and more Smiles
Last October we were privileged to get a few smiles one afternoon, but overall, it's been A LONG time since we've seen consistent smiles...until now. A couple weeks ago we reduced his calories in his formula and it seemed to make a world of difference for his overall demeanour. He's happy much more often, more settled and giving us plenty of smiles and giggles. Oh what joy that brings to this house hold!! To hear giggles instead of crying. It's been very uplifting for everyone here!!
Even though it's GREAT that we are seeing all these smiles, it comes along with a large concern. With the reduced calories he can't sustain his weight. With no sustaining weight gain, his organs are put under stress, which leads to even more complications. So, we are going to have to make a decision in the coming week or so what direction we want to travel. Increase his calories so he'll at least maintain his weight, but have him much more irritable (and a host of other issues,) or do we allow him to be happy with reduced calories?
It is such a blessing to have God's word applied personally in a sweet way. Several weeks ago in church we sang several verses from Psalter 383. While I was singing verse 2, my thoughts wondered over to Jacob's life. It brought so much comfort that day and many times since. His life is in God's perfect plan. Even in these trials and tough decisions, God is present, a very present help!!
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| Even though this picture is blurry, I can hear his little squeal when I look at that face :) |
It is such a blessing to have God's word applied personally in a sweet way. Several weeks ago in church we sang several verses from Psalter 383. While I was singing verse 2, my thoughts wondered over to Jacob's life. It brought so much comfort that day and many times since. His life is in God's perfect plan. Even in these trials and tough decisions, God is present, a very present help!!
Psalter 383:2
Ere
into being I was brought,
Thy
eye did see, and in Thy thought
My
life in all its perfect plan
Was
ordered ere my days began.
Wednesday, 5 February 2014
Some Thoughts
It's been a while, once again, since I've blogged. It has been a time of so many thoughts and experiences that it's hard to find the words. I'll try to accurately write what's been going on.
First off, Jacob's EEG results have come back with somewhat negative results. His seizures are occurring in a part of his brain which have never seized before. According to our paediatrician, this makes sense for his condition, but it's not a positive one. We are once again faced with signs of regression. Where we go from here is an unknown. We are to meet with the neurologist soon to discuss our options. One difficult point regarding Jacob's seizure activity is that a typical EEG won't pick up any seizure activity from the brain stem. So, many of Jacob's abnormalities could be seizures but we have no way of concretely knowing. It takes a surgery to place a prod by the brain stem to read brain stem seizures. Considering surgery is basically not in Jacob's dictionary, this is not an avenue we are willing to travel. Once again we are called to live a life of uncertainty, from a medical stand point. It's a good thing we know that God has all things in His control and that nothing is hid from Him. What He wants us to know, we will know.
Jacob's had an increase in apnea (not breathing) spells. Yesterday alone he had 6. This comes as an enormous concern. They last for up to a minute, with his oxygen saturation levels plummeting to an extreme low! These spells also make sense considering the part of his brain which is so compromised, regulates breathing. If only there was something we could do about it.
His concentration of feeds have been greatly reduced to alleviate constant vomiting and retching. So far so good, but...his body needs more calories than we're currently giving him, so it feels like we are truly between a rock and a hard place. The plan is to slowly increase his feeds to find out when the intolerance kicks in. This step comes as a painful one because his smiles have returned. We believe he feels much better with a lower calorie intake. Time will only tell.
Yesterday marked Jacob's one year mark since his last pneumonia. Last year we had said our good-byes to him, we were watching him slip away from our grip, yet, one year later we are still able to love and care for him. What a blessing! What a gracious and merciful God, to supply us far beyond what we ever thought possible.
It's also been a tough winter with so many night nurses cancelling due to weather. This makes for long tiring nights and exhausting days. We just get our feet under us and then we get a call that the nurse isn't coming. Some nights we've been thankful she didn't come because driving was truly treacherous. It's sure been a long, cold, snowy winter!
First off, Jacob's EEG results have come back with somewhat negative results. His seizures are occurring in a part of his brain which have never seized before. According to our paediatrician, this makes sense for his condition, but it's not a positive one. We are once again faced with signs of regression. Where we go from here is an unknown. We are to meet with the neurologist soon to discuss our options. One difficult point regarding Jacob's seizure activity is that a typical EEG won't pick up any seizure activity from the brain stem. So, many of Jacob's abnormalities could be seizures but we have no way of concretely knowing. It takes a surgery to place a prod by the brain stem to read brain stem seizures. Considering surgery is basically not in Jacob's dictionary, this is not an avenue we are willing to travel. Once again we are called to live a life of uncertainty, from a medical stand point. It's a good thing we know that God has all things in His control and that nothing is hid from Him. What He wants us to know, we will know.
Jacob's had an increase in apnea (not breathing) spells. Yesterday alone he had 6. This comes as an enormous concern. They last for up to a minute, with his oxygen saturation levels plummeting to an extreme low! These spells also make sense considering the part of his brain which is so compromised, regulates breathing. If only there was something we could do about it.
His concentration of feeds have been greatly reduced to alleviate constant vomiting and retching. So far so good, but...his body needs more calories than we're currently giving him, so it feels like we are truly between a rock and a hard place. The plan is to slowly increase his feeds to find out when the intolerance kicks in. This step comes as a painful one because his smiles have returned. We believe he feels much better with a lower calorie intake. Time will only tell.
Yesterday marked Jacob's one year mark since his last pneumonia. Last year we had said our good-byes to him, we were watching him slip away from our grip, yet, one year later we are still able to love and care for him. What a blessing! What a gracious and merciful God, to supply us far beyond what we ever thought possible.
It's also been a tough winter with so many night nurses cancelling due to weather. This makes for long tiring nights and exhausting days. We just get our feet under us and then we get a call that the nurse isn't coming. Some nights we've been thankful she didn't come because driving was truly treacherous. It's sure been a long, cold, snowy winter!
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| The relationship these two boys have, truly melts my heart. This picture was taken before Jacob's smiles returned, but you can see how content and happy he is with his brother right at his side. Caleb goes out of his way to give Jacob toys, especially if Jacob's sitting in his chair. Caleb wants Jacob to 'feel' things. That's something we've never taught Caleb, it's just in him :) |
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| This may just look like a sleeping Jacob, but there's more to this picture. We've been blessed to have a couple of fantastic nurses in Jacob's care now. The one will often go the extra mile (or two.) This particular morning, she left and I discovered Jacob was hugging one of his teddies. To most people that token of love would mean something, but for us, it means tons. Here's why...every different position Jacob's in, benefits his muscles/bones. Even a slightly different position gets his muscles working in a different way. The saying goes, 'it's the little things that count.' It's so true!! |
Wednesday, 15 January 2014
Off and Away Again
Today marked the day that Jacob went to the respite home. As much as I love the extra time with my hubby and our other children, it sure leaves an empty place in our home.
At the home they ask for new developments and things of concern that we want them to watch/monitor for. Most months this is a fairly simple process. Usually there is one (the odd time two) item(s) that we discuss. The doctor and nurses are a huge help in the sense of having skilled eyes on him for several days in a row.
This month there were several serious things to discuss, so admission took way longer than normal. They want to make sure they understand 100% before I leave.
We discussed Jacob's apnea (not breathing) spells. These are downright scary. They come and go with no warning, with no special triggers; he just quits breathing for up to a minute. His oxygen saturation drops dangerously low. What can we do about it? Nothing but watch him not breathe. We can move him drastically and still that won't trigger his brain to start breathing. There is nothing the medical world can do to help him. That's tough.
We discussed Jacob's copious amounts of phlegm, yet his lungs are decently clear. Bizarre. It is clear that if all the phlegm was coming from his lungs, he would be having an extremely hard time breathing, but he isn't. We are hoping for some tests in the coming months to help us understand what is going on inside his little body, as the increased phlegm has almost been for 3 months. There are days that we suction out almost a litre of phlegm. This aspect of his care has caused me to be close to him at all times. We are always concerned about him swallowing his phlegm and it going into his lungs, and then causing an infection.
Another discussion point was his jerky/startling behaviour. We are hoping that Jacob's EEG next week will reveal what is going on in his brain. The findings may not be pleasant, but not knowing and constantly be playing the guessing game is not fun either.
The child life ladies are going to work with seating options, as he loves to sit, instead of lying down. It's also really good for his lungs to be in an upright position :)
Sometimes when I look on our past, I'm amazed at how our journey with Jacob has changed. It's constantly changing, always keeping Paul and I, plus Jacob's team on their toes.
Our bulletin had the following meditation, which was a huge comfort for us:
The infinite forethought, wisdom, and goodness which have marked each line of our new path have also provided for its every necessity....
each exigency in the new year has been anticipated;
each need will bring its appropriate and adequate supply;
each perplexity will have it's guidance;
each sorrow its comfort;
each temptation its shield;
each cloud its light;
each affliction will suggest its lesson;
each correction will impart its teaching;
each mercy will convey its message of love.
The promise will be fulfilled to the letter, "as your day, so shall your strength be."
Octavious Winslow
I have some pictures to share, but they'll come later :)
At the home they ask for new developments and things of concern that we want them to watch/monitor for. Most months this is a fairly simple process. Usually there is one (the odd time two) item(s) that we discuss. The doctor and nurses are a huge help in the sense of having skilled eyes on him for several days in a row.
This month there were several serious things to discuss, so admission took way longer than normal. They want to make sure they understand 100% before I leave.
We discussed Jacob's apnea (not breathing) spells. These are downright scary. They come and go with no warning, with no special triggers; he just quits breathing for up to a minute. His oxygen saturation drops dangerously low. What can we do about it? Nothing but watch him not breathe. We can move him drastically and still that won't trigger his brain to start breathing. There is nothing the medical world can do to help him. That's tough.
We discussed Jacob's copious amounts of phlegm, yet his lungs are decently clear. Bizarre. It is clear that if all the phlegm was coming from his lungs, he would be having an extremely hard time breathing, but he isn't. We are hoping for some tests in the coming months to help us understand what is going on inside his little body, as the increased phlegm has almost been for 3 months. There are days that we suction out almost a litre of phlegm. This aspect of his care has caused me to be close to him at all times. We are always concerned about him swallowing his phlegm and it going into his lungs, and then causing an infection.
Another discussion point was his jerky/startling behaviour. We are hoping that Jacob's EEG next week will reveal what is going on in his brain. The findings may not be pleasant, but not knowing and constantly be playing the guessing game is not fun either.
The child life ladies are going to work with seating options, as he loves to sit, instead of lying down. It's also really good for his lungs to be in an upright position :)
Sometimes when I look on our past, I'm amazed at how our journey with Jacob has changed. It's constantly changing, always keeping Paul and I, plus Jacob's team on their toes.
Our bulletin had the following meditation, which was a huge comfort for us:
The infinite forethought, wisdom, and goodness which have marked each line of our new path have also provided for its every necessity....
each exigency in the new year has been anticipated;
each need will bring its appropriate and adequate supply;
each perplexity will have it's guidance;
each sorrow its comfort;
each temptation its shield;
each cloud its light;
each affliction will suggest its lesson;
each correction will impart its teaching;
each mercy will convey its message of love.
The promise will be fulfilled to the letter, "as your day, so shall your strength be."
Octavious Winslow
I have some pictures to share, but they'll come later :)
Tuesday, 17 December 2013
In the Swing of Things Again
I picked up Jacob from respite yesterday with a stomach bug :( I wasn't excited, yet thankful that it wasn't a respiratory bug. He seems to be doing ok today, so hopefully it doesn't develop into anything worse. I'm remaining optimistic :) He was quite content today, which speaks loud and clear in his life!!
Jacob is having more and more time with his splint off. He's been doing amazing!! His leg/knee still looks swollen, but that's a positive thing right now, so I'll take it. His body sure went into overdrive making new bone growth :) We are indeed fearfully and wonderfully made! When I hear how our body works and reacts to situations, I stand in awe at God's handiwork!!
Appointments have been few of late, so we've been able to spend most of our time at home. That's a good thing considering we've had some fairly snowy days around here lately, and none of our appointments are super close to home.
Our case manager is off and away to another country for a couple weeks, which means she doesn't have her work phone with her :( This makes me uneasy. She's been my sounding board for 2+ years. She's often been the first one to hear my fears, joys and frustrations. I'm hoping that she has a great holiday (she deserves it) and that she comes back feeling refreshed.
I've realized that I've taken on a new thinking process regarding Jacob's life. Whenever we would hit a milestone (birthday, Christmas etc,) I would think that this would be the last that we would have with him. It occurred to me that as I was thinking about Christmas time and what Christmas 2014 would mean for us, I thought there is a possibility we will make it! I wasn't thinking we won't make it, but the possibility is there. If God has brought us this far, who's to say, He won't bring us another year??!! He is able, and as a family, we must be in subjection to His will.
Jacob is having more and more time with his splint off. He's been doing amazing!! His leg/knee still looks swollen, but that's a positive thing right now, so I'll take it. His body sure went into overdrive making new bone growth :) We are indeed fearfully and wonderfully made! When I hear how our body works and reacts to situations, I stand in awe at God's handiwork!!
Appointments have been few of late, so we've been able to spend most of our time at home. That's a good thing considering we've had some fairly snowy days around here lately, and none of our appointments are super close to home.
Our case manager is off and away to another country for a couple weeks, which means she doesn't have her work phone with her :( This makes me uneasy. She's been my sounding board for 2+ years. She's often been the first one to hear my fears, joys and frustrations. I'm hoping that she has a great holiday (she deserves it) and that she comes back feeling refreshed.
I've realized that I've taken on a new thinking process regarding Jacob's life. Whenever we would hit a milestone (birthday, Christmas etc,) I would think that this would be the last that we would have with him. It occurred to me that as I was thinking about Christmas time and what Christmas 2014 would mean for us, I thought there is a possibility we will make it! I wasn't thinking we won't make it, but the possibility is there. If God has brought us this far, who's to say, He won't bring us another year??!! He is able, and as a family, we must be in subjection to His will.
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!!
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.
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!!
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| Dear Lisa giving advice and encouraging us, once again. What a blessing it is to have her still involved in Jacob's care!! |
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| Sporting the nasal prongs. He's grown so much in one year! |
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| 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! |
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| 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.
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.
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| His over-sized leg , and his not so over-sized leg. |
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| Sporting his new splint. |
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