This is a copy of an email I sent out that best chronicals this weeks events. My friend Dayna is going to keep this blog up to date for me, but I thought I would get this part on - she will post pictures and updates! :) - thank you Day!
Tuesday/Wednesday:
- Tuesday morning Jadon woke up with a large sore in his mouth that looked to be a blood blister I took him in to STJMC to have it looked at.
- The doctor was not sure what it was, so he decided to err on the safe side and remove it and send it to pathology. He was having trouble with the bleeding, so he added a few extra stitches.
- He sent us home with no after care (other then to return on Monday to have stitches removed), but said the swelling would be down in a few hours
- We left for the cities for the funeral (understanding that he would be ok)
- My aunt rode in the back seat with him, and was wiping saliva filled blood the whole trip
- The swelling got worse, but we atoned it to the novicane wearing off
- By the end of the visitation he was border line lethargic but also very sleepy, his lip was 100 times its normal size (imagine a golf ball in his lip), and he was still bleeding
- We took him to the hotel and cleaned it up thinking it looked better we sent him to bed with Motrin
- At midnight he was covered in blood
- We took him to the ER at Fairview Ridges
- His platelets were "under 10,000" (normal is 150,000 - 400,000)
- Jadon and I were sent via Ambulance to Childrens Hospital
- His platelets when we got here were 2,000
- Since then he has had a platelet transfusion, IVIG, and a TON of morphine, Amicar (a platelet glue - basically makes the few he has more sticky), and antibiotics
- His platelets after the transfusion were up to 6,000 where they still are now.
- Grandpa has been great (as has Grandma Char) - he has taken good care of all of us!
Thursday:
- His platelets have stayed at 6,000 which is not good, but also not bad, because his body is not rejecting the new, and not eating up what was given him. He "should have" gained at least 10 times what he did with the transfusion.
- They believe that he has ITP (Idiopathic Thrombocytopenia). But they are not certain.
- The Amicar is helping the wound in his mouth clot, but he has developed a hematoma in his cheek, so he has a lot of swelling, and alot of blood built up inside the mouth.
- They cant do surgery on the hematoma until his platelets go up
- They arent sure they should do it even if they do go up
- We started Mouth Cares today. They are not easy, and Jadon is not very cooperative, but we will keep working on them
- We will be here at least through the weekend, but we are not sure what steps are still to come.
- They are not committing to anything - they are taking everything moment to moment.
- The good thing is, he finally let us get him out of bed this afternoon and have played in some of the play areas.
- He even played Thomas on line!
- UPDATE ON MOUTH CARES: Our awesome nurse Erica got a HUGE clot off the side of Jadon's mouth - he looks so much better now!
Friday:
- Jadon's labs are back from this morning, and his platelets are down a little from yesterday - they are now at 5,000
- The doctors are not too concerned because anything between where he has been and 10,000 is all considered emergent, and would be treated as he is now.
- The only "new information" is that if his platelets dont come up by Saturday, he will be scheduled for a Bone Marrow Biopsy.
- This is done to rule out a few major illnesses, and confirm that it truly is ITP we are dealing with.
- The only thing that will change this would be if his counts went way up tomorrow and stayed up on Sunday and Monday.
- Jadon has been more active today. He played quite a bit, even made sand art with the Child Life Specialist
- He rode a tricycle around the unit a few times and has been running daddy ragged chasing after him with his IV Pole.
- We have finally started liking eating a little more - of course all food is through a syringe - but since our favorite yogurt is TRIX, and they have it here, we are good to go!
- Great Aunt Chris came to visit tonite. She stayed and watched Polar Express with me so Jim and I could go to dinner.
- Aunt Denise and Uncle Steve came too, so they went and ate with us.
- It was nice to leave for a while, but even better to get back!
Saturday: "let it snow, let it snow, let it snow"... we are getting upwards of 10" today... OY!
- Nothing has changed.
- Platelets are still at 5,000
- Hemaglobin is the same
- So at this point we are scheduled for the Bone Marrow Biopsy at noon on Monday.
- We got to go downstairs and watch some performing dogs this morning - Jadon didnt like it much, but it was an awesome distraction for us!
- Jim took the semi home yesterday and brought my jeep back, so unfortunately we are committed to him working Monday.
- My Dad is taking Jim and Mantha home tomorrow so my Jeep can be at his work ready for him when he gets off work.
- Mantha will stay with our dear friends Josh and Melissa - and of course, Mantha's best friend Bailey and her sister Shelby!
- Dad will come back up as soon as Mantha is off to school on Monday so he can be here with me while Jadon is in surgery.
- Jadons cousin Lainey came to visit this afternoon! They played "Trouble", and he pulled her around the unit on a cart attached to his tricycle. Try hauling a pole around following a trike!
- Uncle Teddy and Auntie Theresa were here too (with Lainey)
I do have my cell with me here at the hospital - if I dont answer, or call right back it is because he is awake and we are trying really hard not to talk to much about it in front of him. This will be the best place to get the latest updates - thank you Day!
We appreciate any and all prayers!!! We want to get this little boy home healthy and ready to celebrate a childs favorite time of year!
Thank you for your support!!!
