At 1am, it was finally time for the blood. If you've never been around for the transfusion process, it's "intense". There are so many forms (all having to be witnessed by two witnesses). Every step along the way has to have 2 witnesses. Our nurse missed one small second signature on one of the labs and the whole process had to be started over. She was overly apologetic but it was truly not a big deal.
Since the blood could be taken from his central line, there was no pain or problem for Manny. And since he was going to receive more blood, I wasn't worried about them taking too much. So just a small delay in timing to make sure it's all done right? I was fine with that. Besides, this floor I'm on basically never gives blood transfusions. It's either done in the ICU (down the hall) or on floor 1 (the hematology/oncology floor where tons are done). So these nurses rarely do it.
So the two nurses come in for the administration. They have several redundancy safety measures built in. And then both stay for the first 10-15 minutes (as that is when the risk of reaction is the greatest). Then the primary nurse stays for about 30-45.
But somehow, after the first 10 minutes, we repositioned him and saw that the blood was all over him and not going in him. There was something wrong with the tubing and the way it connected. Pretty easy fix.
But there was a lot of blood all over him, his bed, etc. It looked like a crime scene! I was joking saying I should take pictures and punk all you readers but their reaction was soooo horrified that I realized most people probably don't take this so lightly as I do. But I'm relieved! He was finally going to get some blood, some much needed blood. I saw this coming for weeks. So I was happy that he was finally getting the help he needed.
About 10 minutes after the blood was actually going into him, he had a definite reaction. He WOKE UP! I mean it was hilarious. He went from this grumpy baby who was screaming and objecting to everything back to "Manny". He was flirting with the nurse, asking to get up in his wheelchair, asking to play ipad, asking for TV on. He even said he wanted to go to Chuck E. Cheese. The nurse asked if she could go too and he yelled, "NO!" In a very playful voice and then laughed.
The problem was ... it's almost 2am and he's wide awake and ready to play. Me? Ready to crash. Thankfully, I'm good at being boring at 2 am so he eventually faded back to sleep.
The rest of the night (the next four hours) were uneventful.
And now this morning I'm just thrilled to have my baby back. He's himself. He's still sick as a dog ... has a high fever, feels miserable, is trying not to let it settle into his lungs, is still weak (all flu related) but for whatever reason, he needed blood. And now he has it.
Now we work on the two things. 1) Get him over the flu without letting him get new complications. 2) Uncover the cause of the dropping hemoglobin. Hopefully some of the blood tests will be back and point us in the right direction.
10am, got the results of the Liver Ultrasound ... completely normal! I am beyond relieved about this. Why? He was on TPN for 3 months when his gallbladder "died" and typically liver is next on the list. He is showing some signs that could be liver failure ... so this is huge! Great news. Phew! One thing off the list. (For now).
11:30 Doc came by. I told him I was only 2 hours into researching iron studies so I wasn't exactly an expert yet. I was having a hard time differentiating between iron deficiency and anemia of chronic disease based on his labs. Doc said that is because he has both. It's a good thing that I know my kid and trust my gut. For 6 weeks now I have been concerned. Something is wrong and I knew it. Sadly, I was right.
Am anxious to see the Hematologist for the next steps. She should be able to explain where we stand, how bad off he is, treatment options, etc. It's so complicated because what helps low iron will actually exacerbate the other type of anemia. So have to find the fine balance.
1pm Dan and the kids showed up to bring me a few things from home and relieve me for 30 minutes or so to run to the grocery store to get us some food. It's so difficult to get to the cafeteria and leave Manny when he is so sick.
Just after they arrived, the hematologist arrived. She said we will take this in steps. He definitely has low iron. They will try to solve it with the least complicated method first and then go from there. For most people, that would be to take iron. Well, he can't do that. So next would be to put it in the Gtube. Those who have followed along know that his gtube is basically unusable. He hasn't had anything put in it since February 2011. (Well over a year). But the doc wants to try it anyway as this is his best chance of absorption.
But as I type this, he is retching. They say if we can keep it down for 30 minutes that would be good. We'll see. Also, his bottom lip is swollen. (Strange!) The nurse I have today isn't one of our "regulars" so she doesn't know us well enough to know that if I am concerned about something, then it's concerning. But I looked up the side effects and swollen lips is on the "severe reaction" category. Seems like we are allergic to the iron. :(
Not to worry, if this doesn't work, we still have IV iron that can be done. (It would be given at the Hematologist office which is inside the hospital for close monitoring.) It's just a lot more difficult.
And it's only with time that we could differentiate from "simple" anemia vs. anemia of chronic diseases (an inflammatory process). She said that is only confirmed with process of elimination. I am THRILLED to have someone monitoring his results besides me. They have asked me to fax the results to them weekly. Yay.
In the meantime, she felt that there is no hematological reason to stay in the hospital. So once he is fever free for 24 hours, we can go home. That means the flu just has to run it's course. And with the blood on board, he has a fighting chance!
He's doing better. Still sick. Still high fever. Runny nose, cough, etc. But he asked to sit in his wheelchair and play ipad. It's the first time he's been out of the bed since we got here. Happy to see it!
7 pm, Manny started retching even harder. He wouldn't stop. I vented his G tube and out came all the iron (that had been put in at 3pm) along with a whole bunch of other "gunk". He was screaming as it came out. Then he started yelling, "Owie Face!" I've never heard him mention his face before. Eyes or ears or nose or neck yes but never Face. So very very strange. His lips were still swollen and the skin below his eyebrows was bright bright red. The nurse saw this and called the doctor immediately. The reaction subsided as soon as it all came out his gtube.
Then he crashed in exhaustion. But he's been awake most of the day, so that is a huge improvement.