It's Tough!

The last 24 hours have been utmost exhausting!  Yesterday I was priveleged to talk with our paliative care nurse.  She confirmed many things that Paul and I have been thinking the last few weeks (and possibly the last couple months.)  Things have been showing a decline more than we want to believe.  All around things are getting worse.  More painful to see!  More demanding of our time!  More emotional times!  More heartache!  More love for our little boy!  More strain on our family!  More questions (many with no answers!)

We are faint in body and spirit.  God has promised that He will never leave us nor forsake us.  So true, yet so hard to believe at all times.  Jacob is fearfully and wonderfully made.  He is NO mistake.  Given to our family for a reason. 

Our daily prayer is now that we will be given the strength and wisdom for today and the days which lie ahead. 

Night Nursing

Many people have asked us over the past year what our night nurses do, including, if they have to stay awake the whole night (yes, they do.)   Yesterday, as I was leafing through the nursing binder, I came across the summary which they have to revise every 3 months.  Currently this is what the requirements are:

- continue to provide 25 shifts per month for needed caregiver relief
- administer and monitor enteral feeds (currently all shift) and administer medications
- monitor general health & well being (skin breakdown, sleep, weight, pain & level/amount of restlessness
- respiratory assessments
- home oxygen, as needed, to maintain oxygen saturation greater than 90%
- oral suctioning, as needed

This summarizes what they are expected to do.  Some nights Jacob makes their life easy, other times not so much!!  Some nurses go far beyond what they are expected to do!  We have a couple of nurses that are thinking regularly of ways to make Jacob more comfortable, make our life bearable, and provide support in any way possible.  They sing fun songs to him.  They provide plenty of cuddles (as soon as he is awake, they get him out of his crib, just so they can snuggle.   Another place where they go far beyond their calling, is how much they care for Paul and I also.  They realize that it isn't easy having them in our house every night, but they are extremely compassionate and understanding.

The second time Kim came to our house (which was last July) Jacob was in respiratory distress.  She was still in training, just graduated from college, yet, she was so calm, level headed and compassionate.  I think that set the stage for Kim, as she saw Jacob at one of his worst times.  Her love for our little boy has grown continually!
We feel the Lord blesses us with these fantastic nurses.  He has placed them in our way, and we feel thankful every time they walk through our door. 

Kim enjoying cuddle time.

Kim playing 'This little piggy.'

Paediatrician Appointment

      Today was our follow up appointment at the paediatrician.  Every time we are discharged from the hospital, we visit our paediatric within a week.   Breanne came along, due to school being finished.  It was nice to have company and great to spend time alone with her.  Breanne is much like her mom when it comes to the medical world.  The appointment always starts with a weight.  I took off Jacob's outfit, just to find the tape had worked lose around the tube and it was just hanging there.  NOT a pleasant finding.  One little tug and out it would come.  Poor Breanne had to get me the tape, (which I've learned never leaves the diaper bag for such occasions.)  She instantly went white and very quiet.  Once everything was taped good, and the nurse left, Breanne said, 'Oh, my toes were tingling.'  Yep, that would have been me 20 years ago (and probably even just 1 1/2 years ago.)  It's amazing what we can do when we have to. 

   
      I didn't come with a long list of questions for the doctor, unlike some other times!  This time I had one main question.  The question was 'whether large, bright yellow vomits are normal after receiving a GJ tube.'  I'll save the rest of the details:)   He didn't look too happy.  He is hopeful that it is just his body adjusting to a different feeding method.  Sometimes it takes kids several days for the body to figure things out.  If it persists, we'll have to make another trek to the hospital.  The doctor is worried about him dehydrating, if he keeps vomitting. 

      One thing that came as a surprise was that he lost weight again.  He had been handling his feeds so well for the week before his GJ tube was put in.  Since it's been in, he hasn't brought up any feed, so I presumed he'd at least remain at a stable weight.  I was hopeful for  a gain, even if it was a small one.   We're waiting for a call from the enteral feeding team regarding our options.  I'm so hopeful that the whole weight loss thing is just a feeding issue - not a neurological issue!! 

      Yesterday, our respite worker was here helping me out.  I went to London to pick up a child's recliner chair.  On the website, there were super cute ones.  When Paul saw the camouflage one, he said that was the one we should order.   I wasn't thrilled with his decision, yet I kept telling myself things could be way worse than not agreeing on a child's chair material:)  When I actually saw the chair, I was pleasantly surprised.  By the looks of Paul's expression when he saw it, it's here to stay.  We have an appointment in July so the chair can have straps added to make it much safer for him. 

Jacob trying out his new chair.  He isn't too sure!

     

New Tube

     I tried to make this short and sweet, but I don't think I faired very well.
   
     Yesterday Jacob received a new feeding tube.  The tube passes through his stomach into his small intestine,  therefore his feeds and meds will be bypassing his stomach.   It 'was' suppose to be a simple procedure.   The doctor that was performing the procedure had the requisition which stipulated clearly what size he needed.  The enteral feeding nurse practitioner thought in the morning, I better make sure they understand that we do want a larger tube, and the GJ tube (the one into the intestine) not his current G tube (directly into his stomach.) 


    
     In the afternoon it was time to bring Jacob in, and I thought I better make sure that they were aware of our wishes to upsize.  I explained in plain english (at least I thought it was plain) why it was important to upsize.  I'll try to explain - Jacob had a size 12.  One size bigger is a 14.  We are unsure if the 14 is going to work, because he often needs to be vented of gas from his stomach.  With the tube going right into the intestine, that isn't possible.  If the 14 totally doesn't work, we can upsize one more size (to a 16) and have a combo tube.   On the outside it has 2 ports, but one tube - one that goes into his stomach for venting and one that goes into the intestine for meds and feeds.  This seems to be best solution for Jacob - as we see it now.  To go one size at a time, they just use local freezing.  To upsize 2 or more sizes at a time, they need to sedate.  That is not even an option, considering the complications that Jacob could have.  Hopefully this makes some sense.
    
      My Mom was very willing to come along yesterday, making travelling much easier if Jacob has any difficulties.  She was a nurse a 'few' years ago:) and has been a pillar of strength for us, as she handles anything medical very well.  Wow, are we ever opposite.  So, yesterday the nurse asks me, 'Are you going to stay in with Jacob?'  I quickly replied, 'No, but my Mom is willing to stay!'  Usually the procedure is done in about half and hour, but not yesterday.  55 minutes later they finally came to get me.  I was sitting slightly uneasy.  They had a hard time getting the tube out of the stomach into his intestine.  When I heard the particulars, I'm super glad I didn't have to watch.  The doctor would have went from having one patient, to two! 
     
      Finally we were on our way home, when I mention something about a size 14.  My Mom says, 'Oh, I thought they put a 12 in.'  I didn't tell her with all the details prior, about why and what the goals were.  She knew he needed the GJ tube, and why he needed the GJ.  Once we got home, I checked and sure enough the wrong size got put in.  I was so frustrated!!  After being told 3 times, seriously??!!  Now, if he doesn't tolerate his feeds, we're going to have big issues.  It'll take a few days to get him up to where we want him to be with his feeds, because we have to start him very slow. 

     I'll keep you posted.

We're Home!

Thankfully another round at the hospital is over.  We were able to come home yesterday.  He is still needing oxygen, but hopefully we can gradually wean him off it.   He has a cough, but we're hoping that with his cough he can get rid of the phlegm in his lungs.  Last time it took 8 weeks for him to get totally over his pneumonia, so we'll see what happens this time.  Time will only tell.

One great story....

The nurse (pictured below) went into Jacob's room at 1:30am Saturday morning, because he was fussy. Just as she got all gowned up and ready for the challenge of getting him calmed down, he decided to vomit all over. It was over his pj's, and on all his bedding. By the sounds of it, she had quite a mess to clean up. Once she was busy at work cleaning him up, he decided to smile at her. Not only once, but many times!!  A few times he even was giggling. She said that even though she had quite a mess to deal with, seeing him smile and giggle made her whole night:) I assured her, that Jacob probably just wanted her close to him.

Here's an overview of our stay.
 


Awake and content - we savoured the moment(s)!



Finally Sleeping - yes, he is in need of a haircut!

A beautiful surprise from a super special nurse.  I never realized how big Jacob's hands were.
Paul had said on Saturday, the best Father's Day gift would be to take Jacob home.   He received what he wanted:)

Jacob's favorite musical toy.  We have the same one at home, and many times it works to soothe him. 

 Our large private room.  The view of London is beautiful. 

One of our all time favorite nurses!

  She's amazing!!

  She's extremely efficient, compassionate and very thoughtful (and with a great sense of humor.) 

 

It's Looking Up

     It's great to be able to write that Jacob had a relatively non-eventful day.  They were monitoring a few things - his blood pressure, temperature and oxygen saturation.  Overall, his blood pressure was good (only high one time), his temperature was decent and his oxygen levels were still low.  It looks like we'll be going home (if all things go well tonight) with Jacob on oxygen, but if that's the worst, we'll be thankful.  It's been a tough road overall, but today was sure a lot easier. 
   
      Once we get home I'll post pictures, but at the hospital I can't download pictures. 

      Thankyou for your continued prayers!

  

Still Hanging out at the Hospital

     It's Friday night, and we've just left Jacob with a fantastic nurse!!  She had Jacob several times with his last admission in March, and we grew to appreciate her more than words can say.   It's so much easier to leave Jacob with someone who is comfortable and experienced with him.  Most of the nurses have really learned to expect the unexpected with Jacob.   He can be challenging to say the least. 

     Paul and I were expecting to see how today went and make a decision from there whether or not we go home tomorrow.  He was stable last night and thankfully slept most of the night.  Today he had the oxygen reduced quite a bit, so currently he is on the same amount as when we came to the hospital.  He had a slightly elevated temperature this afternoon, which was a little concerning, so we'll have to watch what happens with that.  It was confirmed today that Jacob's pneumonia isn't bacterial.  They've sent away a test to see whether or not it's a viral infection in his lungs.  Hopefully we'll see those results tomorrow.  Our dear palliative nurse was still quite concerned with his colour this afternoon, so she adviced we stay till Sunday (if he stays stable.)  We don't want to rush home and then have to rush back to the hospital.  We've done that once, and we'll be far more cautious now. 

     Today was filled with medical conversations with many people.  Amongst them all we had some special visits from family and friends (that makes any day easier:)  Most of the talks were about the easier things to talk about regarding Jacob.  The palliative care nurse wasn't one of those easy conversations.  She says things how they are.  We rely on her so much!  She really puts things into perspective for us.  She's never worked with anyone with Jacob's condition, but has seen similar situations, which is very beneficial.  It's such a wealth of knowledge to have her beside us.  We were talking about what makes Paul and I so strong (well...in her eyes.)  She firmly believes that it's our faith.  I told her that on the outside it might look ok, but inside it's quite often a heavy burden. I feel so often that I'm sinking in the waves.  I feel faithless, so self centered, so often consumed with my own fears.  She then went on to say that faith gets tested during the hard times.  It's easy to have faith when things are going along well, but when we are struggling with something, it's much harder.  Yet, that's faith - believing when we don't see the outcome, or even see that it's going against what we want.   How we need to be upheld on His everlasting arms, moment by moment! 


   
 

In the Hospital

Well, time has come again for us to spend some 'quality' time with some great nurses in the hospital - that come with mixed emotions.  I love reunions, but ones in the hospital are bitter sweet.  Paul and I brought Jacob to emerg last night because he was having difficulties breathing.  Things were only getting worse at home, so after a long 48 hours, we decided to get a second opinion. 

It was confirmed today that Jacob has another pneumonia.  His breathing today was still very laboured, even though he is on an extremely high amount of oxygen.  This morning I had the scare of my life when Jacob became non-responsive for about 30 minutes.  It's amazing how many thoughts can go through a mind in a matter of a minute - let alone 30!   

Today we've had a heavy weighted meeting with the palliative care practitioner and several people from the medical team.  In the meeting we talked about things that we've never talked about before, it's another step.  It puts things in perspective that when a child has a severe neurological condition, things are NOT pretty.  The conclusion of the meeting was, we aren't going to treat the monitors any more, instead we are going to treat Jacob.  So in other words, when Paul or I are in Jacob's room, he will not be hooked up to monitors.  If we are in doubt, the nurse will hook him back up.  The medical team has lowered all his standards on the monitors, which is also a reality check.  Even though this step can be agonizing, it fulfils our desire that we have for Jacob - that he will be as comfortable as possible. 

Paul and I are staying at the Ronald McDonald house tonight because we have no idea what to expect tonight, and we don't want to be 45 minutes away if anything goes wrong.  We'll have to see what we do after tonight, because we have three other kids that also need their dad and mom.   Hopefully they will come up tonight.

We are reminded again that God has all things in His control.  He's known the outcome regarding our dear little boy from all eternity.  For us to be raising a child who will forever honour and glorify his maker, is a humbling reality.  Truthfully, one that I can hardly begin to comprehend.

Back to Reality

      Today I picked up Jacob from a respite program in London.  He was there since last Wednesday morning.  The whole family misses him greatly when he's gone, but it's good for our family to have some undivided quality time.  We try to do something fun with the kids at those times, which we can't do when Jacob is at home.  Jacob goes to two homes for respite.  Each has there pros and cons.  Where he went this time, a paediatrician is there all day, and on-call most of the time she's not there.  Talk about dedication!!  The nurses are an invaluable resource as they solely work with special needs children.  The paediatrician is such an asset also, as she can spend time with Jacob, trying to diagnose issues.  She found out this time, that much of Jacob's reflux is happening because he's constantly in pain.  As a trial they gave him 48 hours of pain meds and he showed a great improvement:)  The only thing...it's a band aid fix.  He can't be on Tylenol and Advil every 4 hours for too long. 

       Unfortunately, we brought home a sick boy:(  He's coughing a lot.  His blood oxygen level is just at the minimum requirement.  He's more irritable than normal.  He's having super sweats.   The good thing though, he's not running a fever.  Hopefully he'll be able to ward this off with no significant side effects.  Providentially we have our tried and true nurse tonight!

      Today I was talking with a nurse practitioner at the hospital regarding a game plan on Jacob's feeding tube.  We are just waiting for a date that Jacob will have his tube upsized.  This is a fairly simple routine.  He does not have to be sedated, they just work with local freezing.  The goal is to upsize now, and then we are only one size away from our final goal - a combination tube.  He would be fed in the small intestine, but we can vent his stomach of gas through the tube which is in the stomach.  This combination tube is not real popular yet, as it came out fairly recently.  Paul and I feel for Jacob this tube will help with much of his discomfort, so we're willing to try it.  I feel this decision was long in coming, but in due time, the way has been made clear.

     We are blessed to be part of a church family.  As the days go on, we realize more and more what a blessing this is to us.   They provide moral support, pray for us, encourage us when things are rough and they point us to the One who we must have our eyes fixed on at all time (how I fall short, I so easily see the waves coming over me!)  They also provide us with a meal a week.  Sometimes it comes steaming through our doors, sometimes it gets dropped off earlier in the day, and we can warm it up when it works for us.  When Jacob is having 'a' day (like today,) a meal is more than appreciated.  A few weeks ago Jacob was having an ok day, so I thought I'd do something really special for supper (bbq'd burgers, yes, that's as special as I can get somedays.)  Thankfully our family has adapted to 'whatever works for Mom.'  So, I go out to put the burgers on, and instantly Jacob starts crying.  I thought, I'll let him be for a a minute and see whether or not he'll calm himself.  It didn't work!  Before long, he was gasping for air, choking on his secretions and getting more worked up by the minute.  Needless to say, the burgers were not done to perfection!   A meal supplied is so appreciated because of those hectic times.  Thank you for your many delicious meals!!  We feel it is one way that God provides for us. 
 

Struggles and Joys

       Over the past year, I've realized I don't handle change very well!  In the past couple months, we've had a bit of a turn over with our night nurses, which I find frustrating and exhausting.  Having a nurse in our house from 11pm to 7am is a trial in itself, let alone getting to know a new one every month!  I've contemplated many times recently whether we should reduce the number of shifts we get, just so we have some normalcy back in our family.  It's sad when the nurse tells me in the morning, 'Caleb got up once to go to the bathroom, Sheryl must have been having a dream, because she was talking in her sleep,' and... I slept through it all.  Yet, for me to be up any (and sometime many) hours of the night, can't happen for long, as I have to be loving and patient with our other children.  Jacob is still in no sleep schedule, so he can be up for many hours of the night.
       We have two night nurses that are absolutely fabulous:)  They respect the decisions we've made about Jacob, they care abundantly for him, they come with loving advice, and they love our other kids.   They truly have become a big part of our life, and I'm beyond thankful for their love and care they continually give.   We've had one of our nurses for almost a year, and I look forward to her warm smile whenever she comes through the door.  I feel that God has these nurses in His control, and am so thankful that He has placed these great ladies along our path!!
    
     Yesterday was just one of those days.  It all started at 7:00 when the nurse left me with a very irritable Jacob!  That's not easy considering the kids have to get out the door for school.  With Jacob's condition, it is impossible to let him cry for long, as he will start struggling for air.  His airway collapses, and soon enough, he'll start vomiting up phlegm or his feed.   Around 8:00, he had a very large vomit that was green - ooooh, not a good sign!!  Thankfully we had a paediatrician appointment booked for yesterday morning.  Our paediatrician is extremely thorough and very knowledgeable.  He came to the conclusion that Jacob aspirated (when phlegm/feed gets into the lung.)  This comes with a huge concern, as this could very easily develop into pneumonia.  I was told what to watch for the next 12-48 hours.  So far, he seems to be holding his own.  He is still sounding really rattly, but his lungs sounded better today. 
    Once again our family is reminded that Jacob's life is so fragile.  

    On a positive note... we had our family picture taken last week by a great photographer (my dad.)  Trying to get 6 people to co-operate took some effort, but it was worth the effort!!  I treasure each one of these pictures.
      


Our precious family