No, we are not back in hospital! Just wanted to share some pictures from our last stay. Noah is doing well and we have made it through a week at home! Thought it was time I posted about how things have been going here. We had started working up on his feeds in hospital, and he left hospital with his GJ feed of Tolerex running at 17cc/hr with supplemental full TPN. We are now at 30cc/hr of Tolerex so we should soon be able to stop his basics and just run lipids over 10hrs at night as well as D5W through the Infusemate at 5cc/hr during the day to keep his central line open. We are unable to lock his line at all, due to his high risk of clotting. This is where we were at before Noah went into hospital in January, so it feels really good to be back here again! His new central line is working wonderfully and we've had no issues at all. He is also completely weaned off the Phenobarb, finally! Noah's stoma is healing very nicely too and no more leaking which is SO wonderful!! It must be so much more comfortable for him to not have constant stomach acid leaking and burning his skin. Because the stoma is healing, we are unable to have our second tube for drainage, so we have to live with an NG tube (a tube inserted in his nose down to his stomach) to vent and drain his tummy. It's not pleasant for anyone, but it should only be for a few weeks and then our surgeon can insert a GJ tube that has a port to the stomach for venting and a port to his jejunum for feeding. Noah seems to be quite used to it now and has stopped trying to pull at it constantly.
Kailyn turned 8 on Tuesday, so her and I got to enjoy a mother/daughter night out. We went out for dinner and then to the spring tea at girls club. Can't believe I have an 8 year old already! Other than that, it's been a quiet week here and we haven't ventured out of the house much with Noah in tow yet. We are just enjoying being at home as a family, and it's always a bit of an adjustment period for everyone when we first get home. Noah is a busy, typical two year old these days. He is into everything and his favorite pastime lately is to empty out the cupboards. It's still hard to believe that he was so very sick when you see him now! His full recovery is truly miraculous! 
Posts
5 comments:
It's so great that you are home. Noah looks like such an different boy from when he was in PICU. He is your miracle boy!
Can't wait to see you all tonight.
Kim
Thank you for posting the beautiful pictures. What a smile! He just brightened my entire day.
Yes, we are still so amazed at what God has done. And so good you and Kailyn were able to spend her birthday together. I am sure she will never forget that. And we are so excited that you are coming home for a weekend. It has been so long. We will pray the weather is good on Sat. We have had balmy weather all week. Tuesday we hit +11 and today +8.
Nichole, I'm glad that you all are back home and adjusting. Noah looks like a big boy. I just love his smile (and his hair). I pray that he stays healthy for a very long time. I love all the pictures. I'm sure it felt good to have mother/daughter time. Your children are so very blessed to have a mother like you. You amaze me. Your strength, your courage! I've never met you or your family, but I think about you all daily. I love you all.
Take care and may our AWESOME God continue to bless your all!
~Rissa
Hi Nichole,
I was standing in the doors of Childrens' ER early this morning after transporting a baby there, and I looked up and saw the window with Noah's name in it... the same pic in your blog. It was heart-warming to realize I know who this little Noah is, and I prayed for your family.
I don't live in winnipeg, but I fly in and out of there frequently. I will watch for that window, now, and i will continue to pray for all of you,
Su-Ann, a nurse.
Post a Comment