Noah & I head back to PCH early tomorrow morning for 2 procedures & possibly a full day back at the clinic. We were there again this afternoon as well. The thought of us only going once this week was just a dream...
Noah coughed up his feeding tube yesterday morning. Scary, it came out of his mouth while it was still attached to his cheek and through his nose. He was gaging on it and I couldn't get it out fast enough. Because he now has the adenovirus in his upper respiratory system. PCH wanted to check his lungs to see if it has spread to his lungs. So we went in for what was suppose to be a quick listen to his lungs and a chest x-ray. Yeah right, it turned into a 3 hour visit
Sorry for the delay on an update on Noah Swanson. It's been crazy in our household. Scott Swanson & I took the kids in our RV camping at McDowell Mountain Park this past weekend. Noah loves the RV and was so excited about going camping. I knew he would tell the doctors & nurse at PCH about us going. So I told our doctor on Friday that we going. You would have thought we were driving across the country from the look of concern... I'm happy to report that it was a great weekend! It was nice to have some normalcy in our lives.
Here's an update on Noah Swanson. It was a rough day for little man yesterday. He vomited/sneezed up his feeding tube. We had a clinic appointment anyways which was good.
Scott Swanson & I met with Dr. Adams yesterday. We got the results back from his bone marrow aspiration. He's cells are still all donor and the best news is there is new trace of his cells being dysplastic which means that his Myelodysplastic Syndrome appears to be cured for now! It was the best news we could have gotten! It makes going through all of this worth while!
Noah still has other issues that we are dealing with. It appears that he definitely has graft vs. host disease (GVHD) of the skin. We have to go see a dermatologist next week. Dr. Adams said she can't decrease his autoimmune suppressant drugs just yet unit the GVHD is under control. He is still dealing with the 2 viruses.
Noah Swanson is fast approaching his 100 day post transplant mile stone. Today he is + 96. He will have his 100 day work up probably next 2 weeks. Today was the only day we didn't have to go to PCH clinic. It was so nice not to have to rush out of the house to get there by 9am. Noah is still fighting off the Adenovirus. The IV anti-viral medicine is hard on his kidneys. His kidney levels have been elevated again so he is getting extra fluid to help flush them. Little Man still has no desire to eat. He's still on the TPN & formula feedings. His medicine regiment is getting easier for Scott & I to handle. The only issue we still have is changing his dressing for his central line. He just freaks out and it is 2 or more person job.
Today Noah Swanson gets to go home! We've been at PCH for a total of 81 days almost 12 full weeks. Tomorrow is his birthday... this is the best birthday present ever! We are just waiting for him to be discharged. We thought it was going to happen around 3 or 4 but now it is looking like 6ish. The home care nurse will come to our house around 8:30 to get him all set up with his IV meds & feedings.
Thursday will be 10 weeks since Noah was admitted to PCH to start his transplant journey. I can't believe it is already September. Noah's birthday is fast approaching us on the 18th. I hope more than anything that he will not be in the hospital for his birthday. We all are beyond tired and frustrated. I think over all we have done well considering what we've all been through. He is still having stomach and bladder issues. Last week was really rough on him. He was in so much pain from the bladder spasm. They put a catheter in to help relief some of the pressure on his bladder.
Today we've been at PCH for 8 weeks. We can finally see the light at the end of the tunnel. If everything continues to go well Noah will probably be/ discharge after Labor Day weekend. There was talk about next Thursday 8/29 but because the clinic is closed on Monday that would be to long between appointments. Noah is still have stomach issues. The results of his endoscope of his stomach showed that he had HHV6 and some signs of Graft vs. Host Disease of the gut. They are treating the HHV6 right now and watching to see which direction his stomach will go. His kidneys and liver is doing great. He will be done with the VOD liver medicine on Monday. He has a feeding tube now that is helping with the oral medicines.
It has been a crazy couple of weeks in our transplant journey! Noah has some many set back these last couple of weeks with the HHV-6 viral infection, the fungal infection and VOD of the liver. He started his new medicine for the VOD on Monday. We'll be at PCH for another couple of weeks since the course of med's is 21 days. Noah has had fevers off and on for weeks. His liver and kidneys are both stressed from the chemo and IV medicine. He was so sick on Monday evening that he was almost transferred to the PICU. But today we got the best news! He had a bone marrow biopsy last week. Today we got the results. His cells in his bone marrow is 95% donors. His transplant is a success!
Well are journey the last week has been a roller coaster ride. Noah new cells grafted last week; Wednesday - Friday with his ANC levels above 500+ three days in a row. This was really good because his new cells are starting to work. However, Saturday & Sunday they start to drop below 500 again. Noah has still having some major stomach issues with vomiting and diarrhea. This has been going on for weeks now. He also started running another fever over the weekend. He was tested last week for another set of virus and one came back positive. He will have to be on another medication for 2 weeks, 3 times a day. Now we have to watch out for the graft vs. host disease.
It was a really rough weekend for him and Scott. Noah Swanson fevers continue until Saturday evening. The rash spread and was all over his body. The doctor told us they determined that it was pre-graft vs. host syndrome. The cells are grafting too fast for his body. So they decided to put him on steroids for 3 days to slow the grafting down. Noah got his first dosage on Saturday. Noah doesn't do well on steroids but the good news is that it has worked. He has been fever free since Saturday night. His rash is gone; his heart rate is back to normal. The doctors are very encouraged with how well he is doing. His ANC has climbed to 272. I got some good news today. When Noah’s ANC’s reach 500 three days in a row he will be able to leave his room; he will be able to go for walks on the floor and play to the isolated playroom.
Recent blog posts
- 11-21-13 update
- 11/12 Update on Noah
- Update on Noah
- 100 days post transplant is fast approaching!
- Noah finally gets to go home!
- Today is +60 in Noah's transplant journey. We are going on 10 weeks.
- Today is +47, 8 weeks at PCH.
- Today is +35 in Noah's transplant plant journey! We got some really good news today!
- Today is +25 in Noah's transplant Jouney.
- Today is +17 in Noah's transplant journey.