We've been blessed to have more visitors the last couple of days. It's nice to reintroduce Josiah to family and friends. A cousin came by yesterday and we put her to work holding Josiah and then playing with Isaac. She had great timing as our shift nurse was not available yesterday (we certainly missed him). Caring for Josiah is certainly doable by one person, except when he is very fussy and desats and won't be consoled. Then we find that one person needs to hold him and try to calm him down while the other person prepares medications. It's always nice when Isaac is also calm and preoccupied at these times. The case manager suggested that we explain to Isaac that there will be times when both mommy and daddy need to be with Josiah and won't be able to be with Isaac and to think of something special he can do at those times. We're still thinking about what that could be.
A huge thank you to the Gardecki family who sent a comment about the NG tube extension. We actually had these extensions from CCAC but we didn't know what they were! Our feeding bag is the Kangaroo one (purple). The extension is a different brand but it is working really well and we are thankful that we don't need to use tape anymore. Thank you SO much for your comment and of course for your prayers!
We gave Josiah two extra doses of morphine today in addition to his regular two doses. That meant that he was itching his eyes more tonight so we gave benadryl. We also gave him PEG again at lunchtime but he still hasn't had a BM.
We haven't put the sat monitor on Josiah for the last couple of days which tells me that we're feeling more comfortable and we are less anxious when he is upset. I think we're always going to find the morphine decision a little difficult. Tonight I was in his room flushing his NG tube and I looked up at his face and saw that his nasal prongs were on top of his nose and thus he was not getting any oxygen. I'm assuming that he would eventually start crying without any oxygen which would alert us to the problem but we decided to put the sat monitor on him tonight. Hopefully removing his nasal prongs is not his new trick.
The Occupational Therapist and Speech and Language Therapist came today. The SLT focuses on swallowing. Josiah had a food tasting session while they observed. He had some rice cereal which enjoyed tasting for a few minutes. We can try this every day and we'll see if he would like something tastier to try. You may remember that he had also done this at SickKids. The OT came to see Josiah for the first time last week and asked that we put off trying oral foods until the SLT could come as they hadn't assessed him. Josiah passed the test with flying colours.
I've actually slept in my own bed the last two nights! Last night he didn't cry from when I left him around 12:45 AM until around 5:30 AM. He goes down for the night around 7:00 PM after his enoxaparin shot but he often cries out a number of times. What a blessing to see him sleeping more peacefully!
I thought I'd give you a little idea of our schedule in case you're wondering what we do. We have our alarms set to go off all day long so that we don't forget his feeds and meds. Typically Josiah has woken up shortly after 5:00 AM. These last couple of mornings he has woken up very happy with lovely smiles. We boil the kettle to start heating up his frozen milk around 5:40. His first medications and feed are at 6:00 AM. Sometimes he's fussy and presumably hungry before 6:00 AM which is when one person needs to hold Josiah and the other person works on his meds and milk. First we need to check that the NG tube is in the correct place in his stomach by putting air in a syringe and pushing it quickly through the NG tube while listening to his stomach with a stethoscope. We should hear a "pop" if it's in the correct place. We do this every time we use the tube.
Josiah feeds every three hours until 12:00 AM. A feed lasts around half an hour and we need to remember about fifteen minutes into the feed to move the tube because it works by gravity. We flush the tube with water at the end of the feed. In total, without any additional medications such as Tylenol or Benadryl or extra morphine, there are eleven times during the day that we need to access the line and this involves giving eleven different medications and using 40 syringes. Whenever we want to give him an extra medication at a non-feed time, it involves three syringes: one to check the pop, one for the medication, and one for a flush. We have a system of baggies that I prefill with syringes each night. Someone asked me how long it takes so I timed myself tonight and it only takes five minutes. One of us cleans the syringes from the day in the evening and we put them together the next morning. We love our system.
We've decided that this would be a great time for Isaac to start sitting on the potty! Back in July when he sat on the potty for the first time he peed right away to my delight but this time he's just happy to sit there while we sing songs from a song book. Well, mommy sings and he looks at the pages. You can picture me sitting beside him singing old favourites like "Only a Boy Named David," and "The Wise Man Build His House Upon the Rock" until I decide it's time for us to wash our hands.
We've been blessed with tremendous support from our family, friends, church family, various other churches, and strangers. This is a time of relative peace right now for which we are so thankful to Jesus. This time is a blessing.
Blessings,
Elizabeth
