Well, it was below 7.0 so I knew that once the clinic in Iowa City got the results, I would get a call saying they wanted to transfuse. I started making daycare and transportation arrangements right then. I couldn't finalize anything until I knew for sure but wanted to have things at least progressing in the right direction so it wouldn't be completely last minute.
Sure enough, I got the call I had been expecting. They wanted her transfused "in the next day or so." Then it was more of a waiting game, waiting on the doctor from the local hospital to call with when they could see her for her infusion. Instead of driving about 1.5 hrs to her hematologist to have the transfusions done, we have elected to use a hospital that we trust about 40 minutes from home.
I got the transfusion all set up with Dr. Neumann (the pediatrician we use for her transfusions at the local hospital) to have the infusion done by the pediatric nursing staff at 11am on Tuesday. This meant I needed to be at the hospital by about 10:30 to give me enough time to check in and register at the outpatient admissions desk and then get her intake done in pediatrics at 11. I was hoping by being early, the infusion would start about 12pm.
Anyway, got daycare set up for the older 3 starting at 9:30am. Our daycare lady could only keep them until 2pm, which was really a problem because Justin wasn't supposed to get off work until 3 and wouldn't be home until 3:30. Thankfully, Justin has a wonderful boss (and had worked a bunch of overtime) so he was able to get off early to get the kids.
I got to the hospital at 10:30 like planned. I was done registering and headed up to the pediatrics floor (having to pass through the sad hallway...why it is sad is for another post...) by 10:40. Her blood typing was done, IV set, and intake questions done all before noon. The lab called up to the floor at 12:30 to say her blood was ready so the nurse gave her the Benadryl (that I very strongly dislike her having to take because it is not Kosher....but her health is more important than that right now...) and Tylenol and went down to get her blood (A+).
When she came back up, she received a phone call from the pathologist and started answering a bunch of his questions. The room we were in was right next to the nurses' station so I could hear everything she was saying. She was explaining Chavah's blood disorder and it was the reason for her anemia and why she needed frequent transfusions. She was also mentioning that it wasn't because of any incompatibility between her blood and mine. He was concerned about incompatibility but it wasn't between her and me...he then asked her my blood type which is O+.
His concern with incompatibility between her blood and the donor blood. She is A+ and so was the donor blood, but she is still young enough that she could have some of my antibodies still which, because my blood type is different could, have reacted badly with the donor blood. Newborns still have their mother's antibodies in their blood for around 60 days and she was only 69 days old, so he was concerned with her reacting to the blood since she was right at that cut off. At her first 2 transfusions, she was given O- (universal) blood. Because of her age and my blood type being different, the pathologist wanted her to get O- blood once again instead of A+.
So instead of starting her infusion then (at about 12:40), the nurse had to take the blood back down to the hospital's blood bank. Then the search began for O- blood in the area. They got it within about an hour or so. But then they had to redo all the compatibility testing (thankfully without having to re-poke her because her typing was still good). By the time the infusion was started it was already 2:30pm.
The infusion is supposed to take 3 hrs, so as to not overload the body with too much fluid at once. Since her infusion started at 2:30, it should have been done at 5:30. However, there were some technical difficulties with the pump used to slowly give the blood over the 3 hrs. It is a machine much like an IV pump, only a syringe fits in a little slot on the side of it and it slowly pushes the back of the syringe at a steady rate to give the blood at the right speed. Every little bit, the the machine would beep and stop pumping, saying that the line was blocked.
At first the nurse thought it was just that machine, so she switched machines. It was still doing it, so she thought maybe Chavah was bending her hand too much where the IV was put in, so she taped everything down better (she had a splint on her arm to make it harder to move her hand). That worked for a little while, but then it started acting up again. When the nurse from the next shift came in, she programmed the pump differently (so instead of it just saying she got 18mL and set a timer for 1hr, she set it at a rate of 18mL/hr with a volume of whatever was remaining in the syringe). That worked for the rest of the 1st syringe and the whole 2nd syringe, but then it started acting up again on the 3rd syringe so she switched machines and then it worked just fine until the end. Chavah weighed 5.48 kilos (about 12lbs) so she was given 54mL of blood (3-18mL syringes) over 3 hrs (10mL per kilo). Her infusion was finally over at 6:30.
I was gone for over 10 hours from 9:30am to 7:45pm. It was a VERY long day at the hospital!
I heard a really good song on the radio on my way home though that really summed up how I was feeling. It was Today is the Day by Lincoln Brewster. The ending of the song is what really spoke to me:
I will stand upon your truth
And all my days I'll live for you
And all my days I'll live for you
I will stand upon your truth
I will stand upon your truth
And all my days I'll live for you
And all my days I'll live
Today is the day you have made and
I will rejoice and be glad in it
Today is the day you have made and
I will rejoice and be glad in it
and I won't worry about tomorrow
I'm giving you my fears and sorrows
Where you lead me I will follow
I'm trusting in what you say
Today is the day
