My stomach in knots and a tightening in my chest.
I could feel the anxiety building. I could feel myself slipping away as panic flew in. I could feel the fear, the what if's, the "worst case scenario's" come flooding back.
I was so weak and so worried and so helpless.
Right now I hold a sweet precious baby in my arms. A 13 month old with seven teeth and five words he can say. Almost walking and kiss giving. A love bug in every sense. My co sleeping, breast feeding, chubby cheek, strawberry blond, blue eyed, very vocal, inquisitive, cautious, beautiful beautiful baby boy. I hold him and breathe him in. Every inch. What a road we have gone through. A road I thought we closed.
His ANC has been doing great. His anemia is better, his albumin normal, and the infections are getting less and less severe. He is growing and healthy. He is over 22 pounds now. Height wise he is still tiny and not yet on the charts but I have faith he will be soon. The bad stuff? Behind us. It was going to be smooth sailing from here on out.
Two days ago he starting developing some petechiae on his hands. Then his arms and back of neck.
Last night we went to the ER just to have him checked given his history. Maybe he needed another Vitamin K shot?
His clotting times are normal, the ANC is great, his platelets are good.
Out of all the blood work only 8 tests came back abnormal. For him most of this was acceptable and his "normal". Whatever that means?
Any way, one test, his alkaline phosphatase (or ALP) was off the charts. Normal range is 50-136 (up to 300 for children is considered normal). His count was over 2300.
This tests liver and bone function and is elevated in instances of liver/bone damage or disease.
His other liver function tests look good and his bone marrow biopsy was normal.
This opens a whole new can of worms, and tests.
Right now we will repeat his blood work on friday. I am hoping this was a fluke and it will be normal on friday. However, if it is still elevated we will repeat his skeletal survey to hopefully rule out Langerhans cell histiocytosis.
I really thought this was behind us and I feel so unprepared to be pushed back into the unknown. I don't really feel prepared for this journey again. This is one instance of deja vu I do not want.
Can you pray that the blood work comes back normal on friday? And if not, pray for my strength please. I do trust in Him. In His hands. I know He will carry me through this again if necessary. I just hope it is not.
Btw...here's a little deja vu I don't mind
