CFHockeyMom
New member
Well, the good news is that we're home.
There isn't really any bad news. Sean's most recent culture didn't show anything new and neither did his most recent x-ray. So, it seems his, low PFT's are because of ??? The Dr. on the floor said it could be an allergy related CF exacerbation. I'd buy that. So, we're home on IV antibiotics (Timentin and Gent). Seems a bit harsh to me given that there isn't anything obvious that they are treating.
Now for the venting... As you know, this was an arranged visit to the hospital. Sean went to clinic on Wednesday and had another decline in PFT's so the Dr. thought he should be admitted. Sean chose to be admitted for a PICC on Friday and hopefully be home by Sunday afternoon. Well, when we arrived on Friday the PICC nurse came into see me. Surprise! It wasn't the PICC nurse Sean is familiar with but someone new. The trouble begins! She said that she'd been reviewing Sean's chart and it looked like he'd need conscious sedation. No kidding. It's not a secret that Sean has MAJOR anxiety when it comes to "pokes". She then proceeds to tell me that because of the need for sedation Sean should have been NPO. Now, I want to know what 10 year old gets a PICC without some kind of sedation? Maybe someone should have sent us home with some instructions so we could have been prepared when we came in. Well, Sean had breakfast at 8ish so they said, that they could start sedation at 2ish. So now Sean has 4ish hours to dwell on it. At 2 they came to start an IV to administer the sedatives for the PICC. So, Sean starts his typical hyperventilating and people start pinning him down. He starts crying and asking me for help. My heart is breaking. Well, finally the PICC nurse stabs him (and I mean stabs him) and promptly blows out his vein! Sean starts yelling at her for missing. She argues back that she didn't miss that the vein just blew out. Sean is now super pissed off that they have to try again and is beside himself with fear/anxiety. So, they try again. Sean has not calmed down and this nurse says to him, "That's it! I'm done. I am not going to do this." Then turns her back to Sean. Now, I'm just thinking here but aren't these people in peds for a reason? Shouldn't they know how to handle chronically ill children?
Sean takes a minute and collects himself. He asks me to hold his other hand. They try again. This time, she seems to have gotten it, except there seems to be a very large amount of blood coming back through the needle. Hmmmm. I'm no expert but that didn't seem right. I was right. She got the artery and not the vein. Now Sean is really pissed. I think everyone in the hospital could hear him yelling, "She missed, Mom! She missed!" So, the nurse says, "I'm done. We're not doing a PICC today. I'll need to talk with the Dr.'s and see what they want to do." Of course it's now 3ish on a Friday. Our options are very limited.
The Dr. (resident) came in and said that they wouldn't be doing the PICC today but they could start him on IV antibiotics via a peripheral IV and do the PICC on Monday when the "usual" PICC nurse was back. I told the Dr. that Sean typically blows out an IV every 12 hours on average so that wasn't an option. We came in for the PICC. She said she'd be back but that the IV team would be in to start an IV to get Sean started on antibiotics. Sean FREAKED!
Fortunately, the IV team that showed up was GREAT! They worked really well with Sean and kept him calm the whole time. They used an infant needle and got him painlessly the first time. The original nightmare nurse swore she used the smallest needle she could but when I saw the size of that infant needle, I knew she was full of crap.
A surgical resident came to talk to us about our options. He suggested either a central PICC or a Broviac. Either would be done in the OR but he thought the Broviac would be best for Sean; allowing him to play sports <img src="i/expressions/face-icon-small-happy.gif" border="0">
They finally took Sean to the OR around 6ish and into surgery around 7ish. Needless to say he was extremely hungry, thirsty, and probably dehydrated after working himself into a tizzy.
We came home yesterday and started doing IV's. I was nervous at first but now I'm already an expert; something I'd rather not be an expert at but this is life. My kitchen looks like a pharmacy. My son has a F***ing tube out of his chest and can't really shower. Sleep is a luxury because of the timing of the antibiotics. Tomorrow I have to go deal with the school and make them understand that Sean will be late for the next three weeks and that he's excused from gym. Somehow I have to explain to my boss that I can't actually work 40 hours at my 50 hour a week job. All of this just reminds me how much <b>I hate CF</b>.
Gotta go flush an IV and start the next med...
There isn't really any bad news. Sean's most recent culture didn't show anything new and neither did his most recent x-ray. So, it seems his, low PFT's are because of ??? The Dr. on the floor said it could be an allergy related CF exacerbation. I'd buy that. So, we're home on IV antibiotics (Timentin and Gent). Seems a bit harsh to me given that there isn't anything obvious that they are treating.
Now for the venting... As you know, this was an arranged visit to the hospital. Sean went to clinic on Wednesday and had another decline in PFT's so the Dr. thought he should be admitted. Sean chose to be admitted for a PICC on Friday and hopefully be home by Sunday afternoon. Well, when we arrived on Friday the PICC nurse came into see me. Surprise! It wasn't the PICC nurse Sean is familiar with but someone new. The trouble begins! She said that she'd been reviewing Sean's chart and it looked like he'd need conscious sedation. No kidding. It's not a secret that Sean has MAJOR anxiety when it comes to "pokes". She then proceeds to tell me that because of the need for sedation Sean should have been NPO. Now, I want to know what 10 year old gets a PICC without some kind of sedation? Maybe someone should have sent us home with some instructions so we could have been prepared when we came in. Well, Sean had breakfast at 8ish so they said, that they could start sedation at 2ish. So now Sean has 4ish hours to dwell on it. At 2 they came to start an IV to administer the sedatives for the PICC. So, Sean starts his typical hyperventilating and people start pinning him down. He starts crying and asking me for help. My heart is breaking. Well, finally the PICC nurse stabs him (and I mean stabs him) and promptly blows out his vein! Sean starts yelling at her for missing. She argues back that she didn't miss that the vein just blew out. Sean is now super pissed off that they have to try again and is beside himself with fear/anxiety. So, they try again. Sean has not calmed down and this nurse says to him, "That's it! I'm done. I am not going to do this." Then turns her back to Sean. Now, I'm just thinking here but aren't these people in peds for a reason? Shouldn't they know how to handle chronically ill children?
Sean takes a minute and collects himself. He asks me to hold his other hand. They try again. This time, she seems to have gotten it, except there seems to be a very large amount of blood coming back through the needle. Hmmmm. I'm no expert but that didn't seem right. I was right. She got the artery and not the vein. Now Sean is really pissed. I think everyone in the hospital could hear him yelling, "She missed, Mom! She missed!" So, the nurse says, "I'm done. We're not doing a PICC today. I'll need to talk with the Dr.'s and see what they want to do." Of course it's now 3ish on a Friday. Our options are very limited.
The Dr. (resident) came in and said that they wouldn't be doing the PICC today but they could start him on IV antibiotics via a peripheral IV and do the PICC on Monday when the "usual" PICC nurse was back. I told the Dr. that Sean typically blows out an IV every 12 hours on average so that wasn't an option. We came in for the PICC. She said she'd be back but that the IV team would be in to start an IV to get Sean started on antibiotics. Sean FREAKED!
Fortunately, the IV team that showed up was GREAT! They worked really well with Sean and kept him calm the whole time. They used an infant needle and got him painlessly the first time. The original nightmare nurse swore she used the smallest needle she could but when I saw the size of that infant needle, I knew she was full of crap.
A surgical resident came to talk to us about our options. He suggested either a central PICC or a Broviac. Either would be done in the OR but he thought the Broviac would be best for Sean; allowing him to play sports <img src="i/expressions/face-icon-small-happy.gif" border="0">
They finally took Sean to the OR around 6ish and into surgery around 7ish. Needless to say he was extremely hungry, thirsty, and probably dehydrated after working himself into a tizzy.
We came home yesterday and started doing IV's. I was nervous at first but now I'm already an expert; something I'd rather not be an expert at but this is life. My kitchen looks like a pharmacy. My son has a F***ing tube out of his chest and can't really shower. Sleep is a luxury because of the timing of the antibiotics. Tomorrow I have to go deal with the school and make them understand that Sean will be late for the next three weeks and that he's excused from gym. Somehow I have to explain to my boss that I can't actually work 40 hours at my 50 hour a week job. All of this just reminds me how much <b>I hate CF</b>.
Gotta go flush an IV and start the next med...