Isaac loves the story of Noah's Ark. (Well, at least he likes the children's version which tends to skip over the death and destruction part.) Isaac went to the grocery store with his grandparents today and he was quite pleased to see Noah there. Noah had a long white beard and happened to be wearing a big red suit. I wonder if Isaac would like to get his picture taken with Noah.
Our shift nurse is very attentive to Josiah's needs. It's great to be able to have a nap and know that someone is with Josiah. An RN comes daily to hep lock Josiah's picc line and do a quick assessment. We met the physiotherapist today and she gave us a few more ideas of things to do with Josiah and explained the suction machine (which thankfully he hasn't needed since we arrived home). Tomorrow the CCAC case manager will visit along with a nurse practitioner who works with our paediatrician.
Graham left the house to do some errands today. He picked up some medical supplies and went to a pharmacy to get some assistance regarding one of Josiah's medications. I ended up being by myself for a while with both boys as the nurse left for his lunchbreak. I was thankful that Isaac didn't wake from his nap and Josiah was calm.
Josiah had a few smiles today and lots of laundry. The cap on the end of his NG tube came off a couple of times when Josiah was in his bed. We've put some tape on it to help keep it closed. These tubes are supposed to last a month but we access it so often for all the drugs we're giving him.
We're hoping that everyone here has a good sleep tonight. Isaac did not want to go to sleep and seemed to be wired. We're going to try a new strategy tomorrow night.
I have laundry to fold (I enjoy doing laundry) and a feed and medications to prep so I will say goodnight. My knees and hand felt a little better today so I'm thankful for that.
Thanks for your support and prayers! God gives us His daily bread which sustains us.
Blessings,
Elizabeth and Graham
Noah - that is so cute! The Broughm's continue to pray as do your CCCC friends. hugs.
ReplyDeleteThat is funny about Noah. Theo thinks all older men with white beards are Papa, or else other people's papas... including Santa :)
ReplyDeleteWe'll be praying for more sleep for your whole family!
Love,
Jenn
That made me laugh that Isaac saw Noah in a red suit! Don't you love how kids make us laugh! Will be praying you get peaceful sleep! Janice
ReplyDeleteHi Elizabeth. Our family has been praying for your family and Josiah ever since he was born. You have been through so much. Each and every day together is a generous gift from God. There are many Bible verses that help us keep our eyes focused on Him and His unending love for us. I find comfort in James 1:12 which says: 'Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love Him.'
ReplyDeleteIn regard to the part of your post commenting about Josiah's NG tube medication port leaking, that is a problem. Obviously Idk what brand of tube he has, but I'm hopeful my information may be helpful, Idk. 'Kangaroo' brand makes an extension piece that can potentially attach to the NG tube. The extension piece is about 6 inches. Idk if it will work for Josiah's situation, but if you can use the extension piece and use that medication port it may make his NG tubing last longer. Only having to change extension piece as it wears out. We give meds and flushes a minimum of 5 times a day through ours, and it has really been helpful. It is a 'kangaroo' brand 'Y-site extension'. Reference number 8884705008. Your NP or RN would know if this option would help. Tape is a best friend too!
Love and prayers to your family.
Steve and Meghan Gardecki
Praying every day for you and still little computer access. So happy that you are home with those joyful moments. God knows your every need. Love J.E.
ReplyDeleteI almost spit out my coffee when I read the above about Noah! :) Praying for you often ~Karina
ReplyDelete