We are back from a very frustrating day in PDU. We tried TPA into Noah's line, but it was so blocked that the nurse couldn't get it in at all. So after speaking with our surgeon, the surgical nurse clinician tried taking the cap off the line and injecting the TPA directly in with a 1mL syringe. After a bit of time, she finally got it in. We were all thrilled! So while waiting for the TPA to do it's thing, I took Noah for a walk to get some coffee. He was playing with his shirt, and when he lifted it up, I noticed his line had ballooned out! All the TPA had found a weak point in his line and ballooned out from there. We quickly went back and they pulled the TPA out, but the line is ruined. It has been weakened too much and when we try to flush it, it just balloons out, looking ready to explode. So, after only 1 week with this new line, we are already down to one lumen. The most frustrating part is that this line was sluggish when Noah was discharged from hospital on Monday. If we had TPA'd it then, we could have saved ourselves alot of grief. An unfortunate lesson well learned. This is such a critical line and the surgeon had a very difficult time putting this one in. We can't afford to lose it.
The good news is that the other lumen still works well, so we are able to use it for the TPN and antibiotics. But having only one lumen is risky and at any sign of sluggishness with our working lumen, we will have to head in. Why can't things ever be easy for Noah? All these line complications are so frustrating and to lose half of this brand new line already is very disappointing. At least we were able to come home, but what a waste of a day.
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6 comments:
Sorry to hear of your most recent set back, Nicole. You are right when you say that Noah has touched the lives of a lot of people. I think about him a lot, and check in to see your progress. I (like many others) keep hoping and praying that one day we are going to log on and find out that Noah is off all his machines and medications. In the meantime, we appreciate the frequent updates and are thinking of you and your struggle often. Take care.
April. (buttercup)
Nichole,
Sorry to hear about the minor set back concerning Noah. He's such a brave little boy. Reading your post, I can sense that you are a bit aggravated and it's okay. You all have gone through a lot, but Noah has also touched many lives in the process. You have a very strong faith and God is going to bring you through this storm as well. My family is always praying for you all. May God continue to bless you and your family.
Take care and love you lots!
~Rissa
Ugh - sounds frustrating!
Hi! I found your blog from Miracle Angels. My daughter also has a very rare chromosome disorder, she has an extra part of her 17th. She wasn't supposed to survive, they were wrong...she is now 4. She has many issues, like Noah, but she is so happy and we love just the way she is.
I haven't had time to look thoroughly at your blog, but just wanted to say hi and hope things improve soon.
Take care, Irene
where do you link on to miracle angels mom
Hi, I just wanted to add that I spent this morning looking over your blog in more detail. Noah is absolutely ADORABLE! I love that smile! I can see why the hospital staff just loves him!
I do understand how hard and incredibly draining a hospital stay can be. My daughter had so many during her first year. Being torn between your child in the hospital and your children at home is heartbreaking. Please take care. You are a wonderful mother.
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