I don’t want to ruin the BIG surprise so I will rewind to a few days leading up to today. The drainage in his JP tube significantly decreased down to an average of 8mL/Day. We were under the impression that if it can consistently stay below 10mL/Day Jaxson would have the chest tube removed, and we would be homeward bound…. This was not the case. The fluid draining remained VERY milky, and looked like homo milk in the JP drain. This was apparently a conundrum for the medical team. They said they have never seen anything like it. Usually as the drainage slows down the fluid becomes clear, which is a sign of the duct healing. This is what prompts the removal of the drain.
Well of course Jaxson has to stump everyone. Yesterday his doctor came in and informed us that Jaxson would be started on a new medication called Octreotide. Unfortunately this medication was delivered in the form of needles, 3 times a day (poor Jax!!!). They were going to give the medication a 5 day trial. IF that didn’t work then he would be NPO (nothing by mouth) for 2 weeks and given IV nutrition. This is last resort as you are basically starving the babies, and they are unhappy campers for the duration of this treatment. IF these 2 options didn’t work then Jaxson would undergo open chest surgery to find and repair the damaged duct. The thought of this made me totally sick!!! Here we are on day 18 in the hospital and facing the possibility of another month in the hospital with another possible major surgery.
As we all know life, bills and work commitments do not stop forever. One of us had to head home and go back to work. So yesterday, with a heavy and very sad heart I booked my flights back home for later this week. This was possibly the last few days I would be spending with my family for 3 weeks…..
This morning we woke up bright and early, and headed to the hospital. We were expecting a quick morning as we weren’t anticipating any new treatments or procedures today.
No sooner had we got to our room when the nurse practitioner came in and informed us that Jaxson would be going for a chest x-ray first thing. If that was clear then the JP drain would be removed TODAY! Alex and I were both totally speechless (even our nurse for the day couldn’t believe it). This came totally out of left field and it took a solid few minutes to digest this news.
Shortly after, a porter came and collected us. We took Jaxson downstairs to be put back in the ‘baby smasher’ and have his chest x-rayed. Then we headed back up to his room and anxiously waited to talk to the doctor.
His doctor finally made her way to Jaxson’s room and we got the news….. Chest x-ray was ‘crystal clear’ and his tube was coming out today! We asked her why the major change in his treatment plan. The response was that chylothorax has no real definite treatment plan. It is basically a crap shoot on what works and what doesn’t. She felt confident in the fact the since the drainage amount was so low that the tube should come out and give Jaxson’s body a chance to show that it is healing.
Late morning a surgeon from the OR came and removed the tube!
A few short hours later Jaxson was DISCHARGED!!!
He is not ‘out of the woods’ yet. We are sticking around Edmonton at RMH for the next couple of days. On Thursday he goes for another chest x-ray and follow-up appointment with his doctor. Fingers crossed his chest is still clear and the fluid he is draining has been absorbing nicely into his body. If for some reason that is not the case then Jaxson will have to be re-admitted to the hospital and the chest tube will have to go back in.
Send us all positive thoughts so we can get our little pickle home!!!
We are still very shocked at how today turned out. Tonight the 3 of us are going to dress up and go out for a celebratory dinner, and mommas get to have a drink!
We hope everything goes well over the next couple of days and we can soon all be HOME.
6 thoughts on “Day 18 & 19: Disappointment and a BIG Surprise!!”
Fingers crossed, toes crossed, sending positive thoughts and even throwing some prayers into the mix that Jax continues with his recovery so you can all go home together. Much love to all 3 of you. ❤
Auntie Slip and slide and Uncle Fabio are sending all of our positive thoughts, hugs, and warm wishes to you guys! Lets get Pickle pants home!!!! Love you guys!!!!
AMAZING!!!!! So great to read guys! Lots of love and positivity going your way 😀
Sending prayers your way, he is a very strong little guy. He has wonderful mommies.💙👶👍💚
Exciting news!!! So happy lil Jax is doing so well. Can’t wait til your all back home!! Hug and kisses !!!
Praying you will be home in a couple of days.
hugs and kisses
Grandma and Grandpa