Before I get into the day with Hannah ... Lily woke up a bit sick -- poor sweet baby! Thank you, "Auntie-Mom" & family for taking such amazing care of miss Lily so Hannah doesn't get whatever she has! So glad we did some birthday celebrating last night but very sad she isn't here tonight!
Hannah's port accessing did NOT go well. We ended up not getting her port accessed because she got poked a number of times & it still wouldn't work. It is so sad that a port that is supposed to make things easier for her causes so much anxiety & pain for her (at times). We left the clinic & went down to the lab (with lots of coughing people !?!?!?) and had Hannah's blood drawn from her arm.
Her blood numbers were low so blood & platelets are ordered from the blood bank & we are going back to the clinic in the morning for her to get both. Oh joy .... another morning of setting the alarm & port accessing.
Hannah is such a trouper but let me just say SHE IS DONE WITH THE CRAZY PORT THAT DOESN'T ALWAYS WORK! I guess her port is in a funny spot (center of her chest) and it is very deep & sometimes turns a bit. I know it is very stressful for the nurses - so my heart goes out to them as they try to get it to work. Today my heart just broke for Hannah thinking "WHY!?!?!?!" Why can't her port just work like a charm? Why does Hannah have to go through all of this? It just feels like "emotional salt on the wound" of this whole Aplastic Anemia thing.
Please pray that the port accessing would go well tomorrow & Hannah would have a smooth day at the clinic.
For any of you that don't know what a "port access" is, and I didn't before Hannah was sick, here is Hannah doing a demonstration of a port access while we were at the NIH. Holly, our wonderful child life therapist at NIH video taped Hannah showing how a port is accessed. This is what she goes through each time her port is accessed.
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Awesome, Han! You got it down! (And LOVE your nails! Have you gotten them done again since we went?) Love you! ~Blair :)
ReplyDeleteThat video is so precious, I just love her! She is so cute and mature!! I was thinking..maybe one of the life lessons during this journey the Lord has taken her on is to show her what a fabulous nurse she will one day make when she is all grown up into the beautiful woman she will be!!! I think that video shows she'd be excellent! xo Amy R
ReplyDeleteOuch ! Poor Hannah! It hurt me and I was just watching!
ReplyDeleteWow! Hannah really has grown up so much since we saw her last! She really does seem older than her years; very competent and articulate and mature. She really is an amazing girl (Robin in ATL)
ReplyDeleteHannah, sorry to hear your port access didn't go well. I'm sure it wll go better next time. I love the cake you made for Lily Good Job. Lily Happy, Happy Birthday Little one. God put you in the Good hands of a Great family. God Bless all of you.
ReplyDeleteHannah - I was thinking the same thing as Amy...you are going to make an AMAZING, smart, comforting, and caring nurse one day. You definitely know your stuff. I am praying and cheering for you in Kentucky. Keep hanging in there, sweetie!!!!
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