Days +17 and +18

I forgot how busy life with two toddlers could be!  Aaron spent a lot of time with Naomi over the weekend giving me time with Niamh and Caitriona.  We had our Friday pizza night together in the family room (except Aaron and Naomi and Micayah and Lauryn who ate in Naomi’s room since she is still in isolation).  Even Naomi ate a slice of pizza! I took Caity and Niamh to the playground on Saturday and that was exhausting.  One thing is for certain: they are very different children.  Caitriona stayed at the sliding board the entire time.  I think she went up the steps and down the slide about 50 times.  Niamh, on the other hand, does not stay still and ran from activity to activity with me following behind.  The longest she stayed at any activity was when she was spinning in circles on the whirl-a-twirl.  Then, she could not walk straight when she got off and I was finally able to keep up with her.

At one point over the weekend, I was dropping food off for Naomi and could not leave Niamh unattended.  So, she tagged along with me to Naomi’s room.  Children under the age of 5 are not permitted in the BMT unit but they are also not allowed to be unsupervised.  So, she walked in with me to give Naomi food and got to hug her and say hello VERY quickly.  I felt like a rebel sneaking her in there.  But really, I did not sneak her in there because she walked in right beside me and no one said a word.  There was even a nurse in Naomi’s room when we were there.  On Sunday, Caitriona fell asleep on my shoulder and I came into the unit to ask for a blanket to lay her down in the family room.  It was so tempting to walk a few more feet for Naomi to at least see Cait through her window, but the nurses were all around and I did not want to get in trouble.  Naomi asks about her sisters every day.  She would love to see Caitriona.  I cannot wait until all of our children can be in the same room again.  While it is somewhat of a comfort to at least all be under the same roof when they visit for a few days occasionally, our first time all together in the same room will be glorious.

Over the weekend, we continued to see small steps of progress with Naomi’s labs.  On Sunday, we saw her first platelet rise.  Platelets were 27 on Saturday and rose to 29!  That was exciting.

Her WBC counts have come up to 300, but her ANC remains at 100.

Her RBC count is sort of hovering, slightly dwindling still.

It is hard to be patient, again.  I want to see huge leaps and jumps, but the dr warned us that we could see fluctuations and even declines yet as she continues an upward trend towards full engraftment.  I am happy right now knowing that typically we would be gearing up for a blood transfusion but her RBCs are at a comfortably low 10.4.  While still not within the normal range, they are well above transfusion level.

Trying to bulk up her protein intake, I went grocery shopping to purchase foods that I knew Naomi would eat.  Everything I purchased for her has been a hit so far.  She eats whatever I bring even if before I brought it she said she wouldn’t want it.  Of course, this is taking me more time away from her which was fine over the weekend when Aaron was with her.  But now that he is not here again, I will need to find a way to add cooking more meals back into my day.  I may need to stop and purchase a small crock pot today to make meal prep more manageable.  But she wants pasta and meat sauce and tuna and ham and sausage.

She has been out of her bed more than in it which is a wonderful thing!  She plays kick ball in the room stopping only to dance.  I look forward to when I can take her outside into the sunshine sometime soon.  We have been here for 23 days now.  That is 2 days more than her previously longest hospital stay.

Date Platelets (150-450) RBCs     (4.10-5.30) Hemoglobin (12.0-14.5) WBCs (3.4-10.8) ANC (2.0-7.3)
-4 1/11/2014 58.00 2.65 7.90 3.30 0.00
+1 1/16/2014 49.00 4.36 13.20 0.40 0.00
+2 1/17/2014 36.00 4.38 13.10 0.10 0.00
+3 1/18/2014 24.00 4.21 12.90 0.10 0.00
+4 1/19/2014 19.00 4.06 12.30 0.10 0.00
+5 1/20/2014 12.00 4.08 12.50 0.10 0.00
+6 1/21/2014 88.00 3.65 10.80 0.10 0.00
+7 1/22/2014 76.00 3.65 11.00 0.10 0.00
+8 1/23/2014 53.00 3.39 10.10 0.10 0.00
+9 1/24/2014 28.00 2.94 8.60 0.10 0.00
+10 1/25/2014 19.00 2.73 8.10 0.10 0.00
+11 1/26/2014 10.00 3.90 11.60 0.10 0.00
+12 1/27/2014 80.00 3.39 10.00 0.10 0.00
+13 1/28/2014 73.00 3.40 9.80 0.10 0.00
+14 1/29/2014 44.00 2.96 8.60 0.10 0.00
+15 1/30/2014 37.00 2.85 7.80 0.10 0.00
+16 1/31/2014 30 3.91 11.9 0.2 0.1
+17 2/1/2014 27.00 3.66 10.70 0.20 0.10
+18 2/2/2014 29.00 3.51 10.60 0.30 0.10


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