Day 22 after transplant: Our day just zoomed right by! Drake went down and had his procedures done this morning. They had to give him a dose of potassium before he went back into the OR. The docs had it running through his line all night last night, but it was still border line this morning, sitting at 2.8. The surgeon said they could also give him a dose throughout surgery as well. We were downstairs for a little over 4 hours today. 1 hour in pre-op, 2 hours of waiting while he was back in surgery, and 1 hour of post-op. The doctor who did his bone marrow and spinal tap biopsies came back and said that he did really well through those, and then about an hour later, the surgeon came out and said everything went well with the line placement. She entered through his existing scar where his port was, so he wont have an additional scar. Thank goodness! I think I can only handle so many scars on our child. I know each one shows just how brave he is, but as a Mom, you can only handle so much. The final results from his bone marrow and spinal tap most likely wont be back until tomorrow or Friday. But the preliminary results, that were read by the pathologist here at the hospital, show that he shows NO SIGNS OF LEUKEMIA! *HAPPY DANCE! HAPPY DANCE!* But, the final results come from the lab based out of Seattle, Washington. They have the super powered microscopes that can detect even the littlest hint of leukemia cells left. They also drew his blood yesterday and today to test for engraftment. We wont know those results for another 3-4 days. It will show us how many of Drakes cells are left, and how many donor cells we will see. We of course want to see more donor cells than Drakes cells, but it is not uncommon this early into transplant to still see some of Drakes cells. Drake had dialysis today. It ended about 7PM. His weight was up a bit this morning from last night, but we are pretty sure its from all the infusions of platelets and potassium that he received overnight. He also had to have dialysis because he received so much potassium. They needed to get some of it back down to a bit lower of a level. He did pretty well through dialysis, but in the beginning he was pretty restless. I had to ask the nurse to give him a couple bumps of his Fentanyl pain medication, and one dose of Benadryl. After about 20 minutes, he was out, and slept the rest of the time through treatment. In the end, before dialysis Drake weighed 13.4 Kilos (29.48 pounds), and after dialysis he weighed in at (26.84 pounds)! They were able to take off 1.2 kilos (2.64 pounds) of fluid! Amazing! While we hate that he has to have dialysis, we are thankful that it helps remove the unnecessary fluid that he doesnt need. He is still tolerating his feeds and medications through his NG tube that goes down his nose! This is a good sign! It means less volume going into his central line, which means easier on the liver and kidneys! The more feeds he gets through his gut, the more likely it is that his liver will wake up and work a bit better! He is up to 20ML (or .67 of an ounce) of feeding formula through his tube PER HOUR! That is really good! The other day he was at 10ML per hour, and being that we are able to bump it up, is a really good sign also! We need those cells to keep growing! And we need his liver to start realizing it needs to wake up and work properly! Once it does that, his kidneys will start reacting better, and we will see a trend on the downside of his liver and kidney levels! Overall, hes doing well at this point! A good friend of ours will be in town on December 4th! She is making a stop by the Ronald McDonald House (in hopes that we are out of the hospital by then) to see Drake! She is also hoping to fill her vehicle with items off of the Ronald McDonald House wishlist! The Ronald McDonald House has been our saving grace for a place to stay during this time! They offer us free meals, a free place to sleep, free facilities to do laundry and free entertainment when we are able to do so! Plus many, many other things they offer! If youd like to purchase something off of the wishlist, to send up here to donate to the Ronald McDonald House, here is the wishlist! rmhc-um.org/how-to-help/our-wish-list/ If you are local to Des Moines, please message me, and I will put you in touch with the correct person as to where you can drop off your donations! She would like them all to be collected by December 3rd! Thank you so much! I know it means so much to all the families staying at the Ronald McDonald House when these kinds of donations are made. It takes a huge burden off of the parents to know they have one less thing to worry about! And just an fyi...the Ronald McDonald House that we are staying in is 78,000 square feet! It houses 48 rooms, has a weight room, movie theater, indoor basketball court, 2 different game rooms, 3 major kitchens on the main level,a school for children while being away, and a furry friendly Labradoodle named Jerry! An average stay for a family going through a bone marrow transplant is 142 days!
Posted on: Thu, 14 Nov 2013 03:11:15 +0000
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