Friday, February 9, 2018

Infusion Day

Yesterday was infusion day.   I was able to bring in all the supplies and the “stuff” to infuse Far Guy in the hospital yesterday.  The Nurses asked what we needed and I said “an IV pole.”  Most pharmacies in hospitals do not carry the protein that we infuse.

Far Guy cannot skip infusions they must happen weekly to help protect his lungs. Luckily his Doctors understand this and told the nurses that we will handle the infusions ourselves.  (There are rules about hospital employees using outside medications on a patient.)

We get shipments once a month.  Last week when he was in a far away hospital, they would not ship the needed shipment because he was in the hospital…so after he was discharged I went over to the supply place pointed at Far Guy sitting in the car and said “Gimme the stuff, he isn’t in the hospital anymore.”

So we learned a lesson, never tell the supplier when Far Guy is in hospital if we are expecting a shipment. ( I called to ask them to delay shipment by one day because Far Guy was in the hospital and no one was around to recieve the shipment…it cannot freeze.)  I made arrangements the next day to have my brother pick up the shipment at our home before it would freeze…but since Far Guy was in the hospital they could not ship…some Medicare rule…and Medicare doesn’t even cover any of the  cost of the infusions.  Go figure I was fit to be tied.

Infusing in a hospital is different than here at home.  We have a routine, we do everything in the same order every Thursday.  It was an adventure in a different setting.  Far Guy has lost weight…another three pounds…his port is free floating anyway… and I had some trouble acessing his port…eventually I was sucessful.  The actual infusion went well.

A number of the nurses were very interested in learning about Alpa One Antitrypsin Deficiency in all of the hospitals we have been in.  Last night three nurses showed up in Far Guy’s room and said “Tell us more”  …so we did.

Hopefully Far Guy will get out of the hospital today, it depends on what his Doctor has to say and how his blood work looks.  ( I have not told Chance yet!)

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18 comments:

  1. These incredibly stupid rules for everything don't seem to keep people from taking advantage of the system. I am so glad you were able to get him infused without too much problem. And I'm hoping he'll be able to come home soon. I promise I won't tell Chance. :-)

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  2. It's good the nurses wanted to learn more, and you were willing and able to tell them.

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  3. Hoping he gets to go home today. You two have had a really tough winter.

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  4. Sur hoping he gets to go home today. I bet Chance will go nuts when he sees his buddy.

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  5. Medicare drives me crazy with their rules and they pay so little. Thank God for Tricare.

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  6. By telling the nurses what you know about the condition, you have helped more individuals - the ripple effect.

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  7. So glad he is better & maybe coming home. Oh what happy dog Chance will be!

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  8. Some rule are totally incomprehensible! This one sounds like complete lunacy.

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  9. What Red said above! Good grief, how incredibly frustrating. Glad the news is still getting more positive. And good for you for educating the nurses!

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  10. I wondered how the infusion therapy was going to work out with all that was going on with you both. I am glad Far Guy is getting better. I can imagine that Chance is a little confused with all of this.

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  11. Hopefully Far Guy gets sprung from his "jail cell" today and both of you can go home & snuggle-in. I wish that for you both! Sending love & prayers your way. xoxo

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  12. I would be fit to be tied, too! Thank goodness for your brother.
    Educating the nurses is a wonderful thing!! I hope FarGuy is home soon. :)

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  13. I hope he gets home today, it would mean a lot to Chance to have him back! Dealing with the rules & such is a real pain, with little logic to it.

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  14. That is really something! The nurses gathering round to learn medical stuff from you. You have sure been a great nurse through all this. Hope he comes home soon. You take care.

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  15. I do hope he gets home soon.You have more knowledge than them from the experience you have had to go through. Take care. B

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  16. Rules are rules. What's remarkable is your ability to work around them and keep that husband of yours going through all of this.

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Thanks for stopping by! I appreciate your comments! If you have a question I will try to answer it here. Connie