Emma had blood work yesterday. We brought Violet along as moral support. Violet takes her position as sister very seriously, and when Emma was stressing over the appointment prior to leaving, Violet reassured her saying, "Don't worry, Emma. I'll hold your hand. I promise."
A little while later, TS was talking to Violet about them going. He was saying how he hated going because everything takes so long and it's so boring. Then he said, "I don't want to go. I can't stand hearing Emma cry." When he's with her, he's very caring and looks like he's about to cry too. But, he's right...it IS boring and it DOES take freakin' forever!
Here she is right after the poke. I admit that, due to my amazing maturity level, I find it very amusing when they ask her what finger to poke that she always chooses her middle finger. It's kind of like "Fine...poke my finger, but I'm going to flip you off while you do it." (She has no idea what the middle finger means, so she isn't really choosing it for that reason!) I like how crazy she looks in the photo and that she is holding up her poked middle finger...
Not too surprising, but Emma needed a blood transfusion. For the past four weeks, she's been very tired, but the past two weeks, she's been even more tired. One day she randomly fell asleep on the couch. Another day, she was outside playing, riding bikes, and when she was done, she was so exhausted she could barely walk up the drive way and had no energy to put her bike away. Then Sunday she laid in her bed or all the couch almost all day long. She's gotten more and more stationary as the days go by. We don't ask her to do much of anything anymore because she's too tired.
There's pretty much nothing good to say about those counts! Her red blood cells are very low and very large, which means her body is sending them out before they are mature, in hopes of getting her more blood faster. But, try as it might, it simply cannot do it. She has such a small amount of marrow, plus it doesn't work correctly due to her genetic makeup, that it can't make enough. But, we do appreciate the effort, Little Marrow!
Her platelets are low, as usual.
Then her WBC/ANC is also very low, which means that her immune system is super duper wimpy. She can get sick super easy and would have a hard time fighting it off.
Pretty much, I'm really looking forward to good blood counts again after transplant! I don't think we could wait much longer than we are.
Here she is with her IV, waiting on the blood, FaceTiming with her cousin (sorry, some of these photos have bad lighting and are grainy, lighting wasn't the best, and sometimes it's beyond my cameras capabilities when combined with children (as in, they move a lot, so I can't lower my SS down much) and I didn't spend a real long time editing because I am too tired!)
My sister, Siouxsie, came up to bring Ella so I could nurse her and see her for a little bit (in hopes of keeping things easier for Tyler too). They stayed for a couple hours, I think (?) and she brought food and it was fun. We listened to some Savage Garden, which I haven't listened to in FOREVER. The kids liked it, and we had a little dance party.
The kids are looking at photos that Siouxsie had on her iPad. It was fun to see them and reminds us how fast time goes by because it seems like yesterday those photos were taken, but it's been years!
So, from the time we made the decision to transfuse, until the time we made it upstairs, it was probably 1hr 30min. Then we got our room, ate lunch (before Siouxsie came), got Emma's IV after about 45 minutes. Then it was another 3.5-4 hour before the blood actually came. Emma was about to lose her mind just sitting there, nothing happening (she had TV and her iPad Mini).
They gave her benedryl and Tylenol, like they always do pre-transfusion, and right before they brought the blood in, she got very agitated and upset. She started crying and crying and crying...and was very wiggly and uncomfortable seeming. I knew it might be overwhelming to her, but she was acting in a different way. There was a look in her eyes that made me feel like something else was going on.
This is right after they got the blood hooked up and she was about to get pretty upset (unknown to me, of course!)...
About two hours after she had been given it, someone on FB commented it was probably just the benedryl! I didn't realize it could make kids feel that way (even though she's done that with every transfusion...just didn't realize that was why). Emma finally randomly fell asleep - like in the blink of an eye, she was asleep and calm. Then when she woke up, she was back to her normal self. While she had bouts of boredom with how long the process was taking (transplant is going to be a bit longer!), she wasn't inconsolable and the "look" in her eye was gone.
In case it's not obvious, I brought my camera along, guessing she would need a transfusion. You will see wayyyy too many photos of the same scene...because Emma didn't move much, and I had about six hours to take them in. Though, some of them I used my iPhone (like the photo above).
In case you haven't seen a transfusion, they give an IV and then take some of her blood. They send her blood down to the blood place. They type it and match it. Then 1.5-2 hours later the blood comes. Then they drip it slowly through the IV, over a few hours.
When it drips out of the IV bag, it drips into this little tube thing and onto a mesh looking thingy. I don't know why... Hope blood doesn't gross you out because there's blood involved when it comes to a blood transfusion.
She had a little bit of high blood pressure. I think the highest was 143/83 or something. It went back down when all was said and done. They gave two bags of blood, one was 2.5 hours long to transfusion and then the other was 2 hours. So, TEN HOURS after we arrived at the hospital, we were headed home. We got home a little after midnight.
Here she is feeling considerably better.
We had two nurses during our stay. Both were named Amy. Both were super awesome. But Amy #2 earns the award for being an above and beyond amazing nurse. She was so nice and so compassionate for no reason whatsoever, other than she is just a really caring person. She was a very motherly, loving person - maybe closer to being a grandmother type of lady.
Emma mentioned she wanted a doll (we always get her a toy after she has something bigger happen). I told her the gift shop was closed, but that we would buy one on Amazon. The nurse heard the conversation and came back with this doll. When she opened the door and showed it to Emma, Emma gasped in happy shock, and you could tell the nurse felt her search (high and low for a doll) was worth the effort just to see a smile from Emma (who had not been having the happiest of nights before that).
Nurse Amy, thank you for being so sweet and caring and working for a smile from Emma. Bribery is always a healthy way to approach things. haha.
When the blood was done, the nurse arrived very quickly. There was no wait to check out. She had done it all already because she knew we were hoping to head home afterwards, no matter how late it was. She came in, popped out the IV, brought in a wheelchair for Emma, and we were out. She's very efficient! And her helper lady was too.
I'm not sure how Tyler did getting all the kids to bed without me, especially since Ella nurses to sleep at night, but they were all asleep and alive, so I take that as a good sign. I walked in to see them all sleeping soundly and looking so very cute and sweet, husband included.
For some reason, this made the fact we are going to transplant all the more real. Part of me is looking forward to it. I really am. I want Emma better. I want to see her go do all the things she wants to do without having to be so worried about germs or whether she has enough platelets or energy. This has been going on for over three years. We've tried other things to treat her illness, but it's time to transplant!
While I'm looking forward to her transplant and seeing her healthy again, I am SO NOT looking forward to leaving my babies. That part just breaks my heart. I find myself listening to the sounds of our home more often, trying to remember all the little things that are so routine and so normal but that I will miss so much. Listening to them playing in their rooms, hearing their little feet run, watching Rhys do random, crazy things because she's two and is the most independent little girl I've met, hearing them laugh...hearing them scream and fight, hearing TS tell me all his stories and all the things that interest him. Watching Violet put her makeup on and showing me the make up she's using, as though we are in a tutorial on youtube. Watching Tyler hug his babies and hugging me.
I know we're doing this to save Emma, and I know it's the right thing, but knowing that doesn't magically make it okay or not painful that we will be separated for so long from each other and that we will miss time with each other that we can never get back. Knowing it's the right choice for Emma doesn't change the fact that I will be missing out 4-6 months of hugs and kisses and seeing/hearing all the things going on in their lives during that time...or that Tyler will miss out on seeing Ella grow.
If they were older, it would still be really hard but not as hard in the sense that when they are so little, they are changing so much so fast. When they are older, they change slower. Plus, when they are little, I believe children truly need their mother for hugs and kisses and attachment. I think that's something they always need, but they are able to handle it better when they are a little older.
I absolutely dread giving them the last hugs and kisses and walking away to take Emma to Cincinnati. BUT, we're ready for her to be better. Thank goodness for amazing family and friends...and for FaceTime.