Our day yesterday went from great, to good, to bad, to worse.
8:00 A.M.- WBC 1.02. First day over 1000. ANC over 500 for the first time. Platelets increased on their own. We are hoopin' and hollerin' in the RV.
10:30 A.M.- Jana and I arrive and notice Hunter's right arm and hand are swelling. His port is on his right side, so we really don't like the swelling.
11:50 A.M.- Dr. Carrum makes rounds. He too is unhappy with swelling and wants to put in a picc line in his arm, then get an ultrasound of his veins in his shoulder and arm to make sure it's safe to pull out the infected port. He suspects either a clot somewhere or that his port is somehow putting internal pressure or blockage in his arm, and wants an ultrasound to check for sure. Hunter has been running fever occasionally, so there also could be an infection causing the swelling. Hunter is super jazzed to get rid of his central line because it really bugs him. He wants his antibiotics run through ASAP before they pull his port.
2:00 P.M.- Antibiotics are finished and nurse arrives with platelets. Hospital policy wants platelets about 40 before a picc line.
3:00 P.M.- Platelets finish, radiology is called to fit Hunter in for his picc. Our pharmacists shows up to go over DISCHARGE MEDICATIONS for next week. His pills will be almost the same he's taken for years plus an antiviral and anti rejection med. He also will get magnesium replace by IV once daily. Totally doable.
4:00 P.M.- Transport arrives to take Hunter to radiology on another floor for his PICC. Happy Hunter. He has hated his ports. He had a PICC a few year ago and dove hunted and golfed in it. Meet with nurse tech and should be pretty easy process. We go to waiting room, should take 15-30 minutes.
4:45 P.M.- Jana goes to check on progress because we still haven't heard anything. She meets them just leaving x-ray, and the tech tells Jana that on his first attempt the line went up into his shoulder instead of down into his heart where it should go. He is going to remove the first and try again.
5:00 P.M.- They wheel him out and back to our floor. His second try wasn't successful. Tech tells Hunter, "sorry, bro." Hunter said the guy putting in his PICC was busy griping to his buddy about how many lines they'd had to put in that day, and how he was ready to get to his party that night. Very unprofessional, and we are disgusted. We are really shocked that this easy procedure that will be so convenient for Hunter was blundered. And now we're in a mess.
6:30 P.M.- Our doctor arrived back at the hospital to make a new plan. We have a really swollen arm, a port that needs to come out, a blown up left arm where the idiot messed up his PICC, and a real need to give IV antibiotics in case we have an infection. We are still waiting on the ultrasound to check for a clot. If one is found, we will have to start anti-coagulants. Surgeons are gone for the weekend, so no central line. One of our only options is looking like a central line coming out his neck. Now we're beyond upset. Needing an ultrasound to check his arm.
6:30-8:30 P.M.- Our sweet nurses call constantly down to the ultrasound office. No one picks up or answers their pages. At all. Jana picks up the phone and calls the patient liaison. They page whoever's on call, but we don't hear back. There are no words to describe how livid, frustrated, helpless, and disgusted we are. We have no idea what's going on inside Hunter's arm. He still has his infected port.
9:00 P.M.- Ultrasound calls back and tells us they're too busy and not coming. Our doctor gets involved and tries to make some phone calls to get them there. Jana gets busy and really goes to work. She calls the liaison for the third time, and they get her message loud and clear. She finally gets a call back from someone who says they will look into what's going on.
10:30 P.M.- Liaison calls back, says he should have been paged two hours ago but just found out the situation. He will start making phone calls. Says the situation is totally unacceptable. We are told our doctor couldn't get anywhere with ultrasound folks. We aren't urgent enough.
10:45 P.M. - A hospital administrator arrives. Again tells us sorry, but ultrasound is slammed and there are patients that need their services more than us. There is only one crew working for the entire hospital. Mark and Jana remind her that we have been waiting since 12:30 for our stat ultrasound. She tells us sorry, but it will be tomorrow morning. Hunter isn't urgent according to her. Wrong answer for Jana. Then she gets the wrath of a mad mad momma who has spent 28 years advocating for her son. Jana goes ahead and tells about our experiences with her hospital once we left the BMT floor on the PICC floor and our poor experience last week in radiology. Now they want to risk whatever is going on inside Hunter's arm. She got lit up. Pretty quick, she changed her way of thinking. She might have caught on that no was not going to be an option for Jana. She leaves to go find the ultrasound crew and assures us that it will taken care of tonight.
11:30 P.M.- Ultrasound lady arrives. Does her job. Says the report will be given to our dr soon.
11:50 P.M.- Our doctor calls and ultrasound report says there could be an old clot, but no evidence of a new clot or infection. He gives the go ahead to pull the infected port. Finally. We are relieved that there is no huge infection brewing in his swollen arm, and that we can get rid of the port that looks infected.
4:00 P.M.- Transport arrives to take Hunter to radiology on another floor for his PICC. Happy Hunter. He has hated his ports. He had a PICC a few year ago and dove hunted and golfed in it. Meet with nurse tech and should be pretty easy process. We go to waiting room, should take 15-30 minutes.
4:45 P.M.- Jana goes to check on progress because we still haven't heard anything. She meets them just leaving x-ray, and the tech tells Jana that on his first attempt the line went up into his shoulder instead of down into his heart where it should go. He is going to remove the first and try again.
5:00 P.M.- They wheel him out and back to our floor. His second try wasn't successful. Tech tells Hunter, "sorry, bro." Hunter said the guy putting in his PICC was busy griping to his buddy about how many lines they'd had to put in that day, and how he was ready to get to his party that night. Very unprofessional, and we are disgusted. We are really shocked that this easy procedure that will be so convenient for Hunter was blundered. And now we're in a mess.
6:30 P.M.- Our doctor arrived back at the hospital to make a new plan. We have a really swollen arm, a port that needs to come out, a blown up left arm where the idiot messed up his PICC, and a real need to give IV antibiotics in case we have an infection. We are still waiting on the ultrasound to check for a clot. If one is found, we will have to start anti-coagulants. Surgeons are gone for the weekend, so no central line. One of our only options is looking like a central line coming out his neck. Now we're beyond upset. Needing an ultrasound to check his arm.
6:30-8:30 P.M.- Our sweet nurses call constantly down to the ultrasound office. No one picks up or answers their pages. At all. Jana picks up the phone and calls the patient liaison. They page whoever's on call, but we don't hear back. There are no words to describe how livid, frustrated, helpless, and disgusted we are. We have no idea what's going on inside Hunter's arm. He still has his infected port.
9:00 P.M.- Ultrasound calls back and tells us they're too busy and not coming. Our doctor gets involved and tries to make some phone calls to get them there. Jana gets busy and really goes to work. She calls the liaison for the third time, and they get her message loud and clear. She finally gets a call back from someone who says they will look into what's going on.
10:30 P.M.- Liaison calls back, says he should have been paged two hours ago but just found out the situation. He will start making phone calls. Says the situation is totally unacceptable. We are told our doctor couldn't get anywhere with ultrasound folks. We aren't urgent enough.
10:45 P.M. - A hospital administrator arrives. Again tells us sorry, but ultrasound is slammed and there are patients that need their services more than us. There is only one crew working for the entire hospital. Mark and Jana remind her that we have been waiting since 12:30 for our stat ultrasound. She tells us sorry, but it will be tomorrow morning. Hunter isn't urgent according to her. Wrong answer for Jana. Then she gets the wrath of a mad mad momma who has spent 28 years advocating for her son. Jana goes ahead and tells about our experiences with her hospital once we left the BMT floor on the PICC floor and our poor experience last week in radiology. Now they want to risk whatever is going on inside Hunter's arm. She got lit up. Pretty quick, she changed her way of thinking. She might have caught on that no was not going to be an option for Jana. She leaves to go find the ultrasound crew and assures us that it will taken care of tonight.
11:30 P.M.- Ultrasound lady arrives. Does her job. Says the report will be given to our dr soon.
11:50 P.M.- Our doctor calls and ultrasound report says there could be an old clot, but no evidence of a new clot or infection. He gives the go ahead to pull the infected port. Finally. We are relieved that there is no huge infection brewing in his swollen arm, and that we can get rid of the port that looks infected.
12:15 A.M. - Port comes out, almost 12 hours after it was ordered. The site actually looks pretty good, once it's out it doesn't look very infected. Culture is taken. IV is started on his left arm, underneath the picc catastrophe.
If you made it to the bottom of this post, you can see that we had a frustrating day. We are very glad for the end result of the port coming out, and that his counts are still coming up. If Hunter wouldn't have had advocates working for him, we could still be sitting in the same position. Thank goodness for parents who will do whatever it takes for their son! We were all tanked, including Hunter. It's crazy how one person's mistake can make such a curveball in plans. We are thankful it ended up ok. This is one crazy roller coaster ride!
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