Oh what a night. Manny had his second dose of iron via tube. According to the website about this drug, It should be spread out over 12 hours but he got his second dose only 6 hours later to try to catch him up. It should be given while food is in the stomach but alas he hasn't had food in there in 7 months so that's a slight problem. And the person should not be lying down for at least 30 minutes after it's been given and it was the middle of the night so he was sleeping.
All these things combined made for a rough, rough night. He was throwing up (which is very hard with a nissen fundoplication). He was foaming at the mouth and had a swollen bottom lip. Then started the muscle cramps. All night long he was crying about his legs and arms hurting. And he kept saying, "Be careful with tummy" and was crying about it hurting.
How often? About every 5 minutes all night long I had to reposition him. I was "sleeping" on the couch across the room. And I was dragging my hiney out of bed very, very slowly. I determined tonight that if he does this, I WILL be sleeping in his bed with him. This hospital is anti-co-sleeping but a girl's gotta do what a girl's gotta do. I already warned the night nurse.
The same nurse was here this morning that saw his bad reaction yesterday. It was time for the dosage and she was like, "What do you want to do?" I said that we could give it but if he had any troubles at all, I was going to open his tube up and let it drain back out. Sure enough, he had the worst reaction yet. So I opened up the tube and let it out.
I devised my plan to talk to Doc about the problem and convince him that this was NOT working. He asked how the iron went but before I could even tell him the whole thing, he said he will be switching him to IV iron. (sigh ... gotta love a doc that listens!)
Now we'll be giving him 3 days of IV iron while in the hospital. That's the easy part.
The hard part is ... some home health agencies will add the iron to the TPN, some will not. I have been told that ours will not. But our home health nurse called me tonight to see what is going on and I told her this. She is going to call the pharmacist tomorrow directly and see what the policy is. And if it's a "No" answer, then she will find out what they WILL do or why they won't do it. We are willing to take the question up to corporate if we have to because if some agencies will do it, then why won't they? And are they willing to lose a client over it? And are there other local agencies that will do it? So ... there is some homework to be done tomorrow for sure.
But we have to get this sorted out because his iron levels are soooo low that we have no other choice. Even after his blood transfusion and 3 doses of iron, he is still anemic. We have to build his reserves. For those who understand iron studies,
Tonight we started the He had his IV iron given and the went right to sleep. Not sure if it's a sign of the iron or if he was just tired/sick and ready to go to bed. We will be able to sort that out tomorrow as his next dosage won't be so late in the day.
He has Influenza B. The way it hit my other kids is ... couple days of just fever, headache/dizzy. Then about day 2-3 add the "cold" type symptoms (stuffy head, runny nose, cough, etc.) This is the most dangerous part for Manny because it's hard for him to cough things up enough so things tend to settle down into his lungs as pneumonia. He's already starting to desat and is borderline needing oxygen. We're already set up for the night in case he does.
10:30 pm, nurse just left and his temp is 103.7 axillary. And he was given tylenol about an hour ago ... so it's not working. And his heart rate is near 200 while sleeping (normally 90 when he sleeps).
Praying for a good night sleep for both of us.