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!)

Adventures in Home Infusions

Home infusions can be an adventure.

Some days are even a tad exciting.

I opened a long handled sterile swab and it flew out of my hand; it seemed like it did a double loop in the air hit the fridge and then the floor…not so sterile anymore. There is no five second rule with sterile “stuff.”  Well that is why they make alcohol preps and I had lots of them.  

Did ya know that a product called skin barrier…which helps protect your skin from the adhesive also sticks to your sterile gloves?

If you have the needle pointed at the port target a bit too much at an angle it won’t go in…stops just like that…I had heard this could happen… OH Lordy…I eased off the needle just a bit and pointed it downward…in like flynn.

We are clamp stupid…both of us.  Yesterday we tried to start the IV and it just sat there…clamps…there are two of them….we are idiots sometimes. Far Guy was just about ready to start cussing.  We did the same thing when it came time to push the saline…clamps won’t let you push in even a drop. Clamp on..clamp off.

I am training Far Guy how to mix the medication…it takes about an hour. Then it takes us about 45 minutes to do the infusion itself.  We don’t answer the phone when we are in the infusion process. There are enough distractions to deal with…making sure we follow sterile procedures as much as possible.

If you know of anyone struggling with chronic bronchitis or early onset emphysema they should be tested for Alpha 1 Antitrypsin Deficiency.  If Far Guys deficiency had been caught earlier he wouldn’t have so much lung damage.  The blood test is free…I had it done…our daughter Trica and our granddaughters are awaiting their results.

Far Guy gets real tired after the infusion.  He got an injection of Kenalog which helps with the shortness of breath.  That injection can last up to three months…BUT the Shot Nurse in the local Clinic didn’t know where to administer the injection…so she gave it to him in his arm…instead of his buttocks…where there is more muscle and the shot lasts longer.  Go figure you would think a Shot Nurse would know a thing or two or three. I was D.I.S.C.O U.R.A.G.E.D.

We are trying to do the best we can…and don’t need inept help…we are inept enough on our own.