The Frey Life I love spaghetti first day and second and yes I speak to my IV drip when I was in hospital as it not nice to have and my vanes is very hard to get at and they take 1hr to do it and I scream in pain
back in april of 2017 i was diagnosed with hyperthyroidism and was passing out a few times a week. i remember one night where i had a 24-hour heart rate monitor on (this being my first taste with medical equipment), laying in my bed, watching these vlogs. i had been following you guys for a while now, but something really hit me that filled me with both sympathy and comfort. i was comforted in knowing that someone i looked up to was going through and feeling the same things as i, just in different forms. every day i get better and stronger with that comforting feeling and the help of your confidence
I love watching raw videos like this. You are both working so hard and it amazes me the knowledge you have accumulated!! When the port had no blood return you looked at each other and an entire conversation went on in just that look. No freaking out you went into problem solving mode. I look up to both of you so much! Keep being amazing
I had a long-haired standard poodle named Quake, and seeing a standard poodle as a service dog makes me so extremely happy, because they have the sweetest nature
Having worked with VAD's (and Implanted Ports since the days when we were researching them as a feasible alternative to central lines), let me say that you probably were one of those lucky patients that had a very good run in the beginning instead of having more of a normal up and down relationship with a port. Much of what you are dealing with now would be the more normal experience and just having one type of needle that meets all needs would be a rarer and not what most people usually deal with. That, added to older techniques in dressing care, many of which we have found out will tend to lead to a dislodged needles - some of these could be your issue. Ports are a wonderful step up in science over the Hickman or Broviac central line setup in that they really have made long term venous access so much safer and a good deal easier and more comfortable than having to deal with a central line but they are not without their issues. Much of what you would have learned and been taught when you got your original port would have been 'central line care' which was what we went with when trying to determine how best to care for ports. Over the years we have learned things and started doing things differently - may things that worked well for central line care actually caused issues for ports. First, if you are having issues with a needle that moves about, displaces or comes out with just normal body movement then you do have an issue. No Huber needle is going to stay secure under every circumstance but simple normal body movements should not be dislodging a needle like that. The most common reason for this is the needle itself and or how its cared for/dressed. I know that you have a needle that is a favorite because of how it lies on your chest but for all extents and purposes that really is going to have to be the last thing to consider. The needle that you use is dependent on many factors and need to be chosen as the appropriate one for the job, and while comfort is a consideration, it may be that the most comfortable needle or the one that shows less under a t-shirt is not the needle best used for the therapy you are getting or for the port you have, or simply for how you live your life. Sometimes you are going to have to deal with needles that have a higher profile or create a lumpier dressing site or the exposed area is larger than your used to, because that is the correct needle choice. Knowing what needle is best under what circumstances also takes on some level of trial and error until you know, but which one feels the best is only one consideration and given that every access is a risk of infection you want to limit how many times your deaccessed. Dislodging a needle should be a rare occurrence and even rarer should be any infiltration caused by a port needle slipping out of the port. The gauge you use is usually only of concern depending on what is put through it but deepening on the antibiotic you are using, especially if its reconstituted then its possible gauge could be one issue. Make sure that you are using a 20 gauge needle and no higher gauge (aka smaller needle) for antibiotic therapy. Usually an 18 gauge is needed for infusion of blood products and 20 is fine to accommodate antibiotics or TPN lipids and for blood draws.. After gauge you need to consider length. Many people are under the misconception that shorter is better. Not sure where that arose from among those with ports but you actually want the needle long enough to be against the back of the port and not only there when you first insert in and then have it pulled back away when you let go and take a deep breath and the chest wall pulls the needle back from that 'all the way in' position. The depth of a port is dependant on the patient, patient weight, the musculature in the area they make the pocket and other factors. A surgeon or radiologist familiar with placing ports can pretty well gauge the depth of a pocket and depending on age and condition of patient really works at that prime 1 inch distance. When your port was put in the person that placed it should have documented the depth they placed it at. If they said 1 inch then you need to be using a 1 inch needle even if 0.75 does not stick up as high or does not feel as large. The same is true if they said 0.50 , 0.75 or 1.5. You need to stick with the length that was sized for your port. Needle length is not an arbitrary choice in this situation. If you feel like there is a gap between the skin and the base of the needle there are dressing considerations that can deal with that but be careful as padding a Huber needle can cause it to dislodge and infiltrate too (more about that later) The next thing to consider in the flow rate and pressure that the needle and port have to deal with. From Bard, themselves, you have both the power injectable Huber needles and the ones that are not for power injections - with a wider range of styles. The power injectables can handle up to 5ML/sec of fluid in connection with a power port and 300 psi of pressure - usually not something encountered except during CTs/MRIs or major trauma situations. The other Bard brand needles - the MiniLoc, SafeStep, EZ, LiftLoc and HuberPlus all have different profiles and different specifications from wings to no wings, some have safety covers while other do not, some have extra padding and so on. Bard pretty much manufacturers a Huber needle designed to meet needs and preferences every patient. For example, the lowest profile ones, the Huber Plus and the SafeStep give you the choice of whether you want wings or not. These needles can't handle a pump that exceeds pressure of 25 psi without leaking or dislodging the needle. Also fast gravity feed can be an issue also if you let it run too fast. Some ports don't do well with gravity fed systems and the better secured a needle you have makes a difference. Most home health services do supply Bard manufactured needles - those listed above - so even if you get a generic appearing needle the packaging should say that Bard manufactured it. However, some companies do use generic ones as a cost savings measure and often these are manufactured overseas. These often use the same naming convention as the Bard needles (or a very similar name such as Mini-Loc as opposed to MiniLoc or SafetyStep instead of SafeStep) but will not say they are manufactured by Bard on the packaging. For things like monthly accessing your port for maintenance, access for a blood draw or a very short therapy they can work fine but if you staying accessed for long periods, getting a great many infusions so that port is very active you probably want to switch to a Bard product. If your Huber needles are not manufactured by Bard and you having dislodges and infiltrations then you may want to consider actually changing to a Bard manufactured needle. Most pumps should not exceed 25 psi but can vary and if not manufactured to that standard you maybe having needle issues simply because the fluid pressure is dislodging you slowly during infusions. There should always be a bit of a gap between skin and needle base. Don't make the mistake of going to a shorter needle to eliminate that gap. You want a tiny bit more needle between the skin surface and the base of the needle so that the skin surface is not always in contact with and pushing against the needle base. Without the gap you can easily pop a needle out just by rolling over in bed. The gap can then be filled with the recommended GuardIVa disk which is a sterile chlorhexidine-impregnated sponge dressing that is about the size a nickle and is split from the center hole to the outer edge so it can be slipped around the needle under the Huber needle base. This gives you some extra padding but without the risk of causing a dislodgement which using folded or split gauze can do. Its also the first major line of defense against infections at the port site and/or in the catheter. Many people mistakenly think that sterile gauze will remain sterile under a dressing and around a needle and that its safe to pad a port with gauze. Of course, in the 'old' days that was how it was done but we have learned a lot since then and we no longer treat ports in the same manner we did - back then our experience was with how to care for and treat and dress a central line and so we used those techniques but we have learned a great deal and even in the past 3 years port care protocols have changed in many ways. Using sterile gauze under a occlusive dressing and thinking it remains sterile is not really the case. Although, the skin is cleaned well when you access the port its not really sterile and so as soon as the gauze touches it there is contamination and the gauze has nothing that its treated with that prevents infection. Also, under your dressing the skin does sweat and oils and other things rise to surface and this is all collected in the gauze and through the gauze to the needle and access site. Gauze also can easily move under a dressing, even if not noticed by you it does swell from any moisture or oils from the skin trapped under the dressing and especially if folded rather then split, it can move and bunch up and shift between the layers. Simple gauze movement can be enough to dislodge a needle, especially if your using a shorter needle than you should. The Huber needle moves a bit all the time, as you breathe, move you arms and upper body and so on, so if you have anything under that dressing that has any bulk at all and thicker then about 1 mm it can cause the needle to dislodge and this why gauze shouldn't be used as padding under the dressing beside the increase chance of infection, either bacterial or fungal. You can also use the sterile re-enforcement strips that come with the occlusive dressing to make a X across the needle and secure it to the skin after putting the disk on and before the dressing.
Actually crying that you're little family is home again. Watching how delicate Peter is with you Mary and how you bloom with joy around him. I'm thankful for your videos, they make me want to be strong x
I have a port, and word on the street at my infusion center is that there tends to be more problems with ports placed by surgeons and it's better to have them placed by interventional radiology.
When my port flushes fine but doesn’t get blood return, I think it’s because I get a fibrin sheath on the end of the line that makes a suction effect when pulled back. The latest time, my nurse recommended turning my head away from my port and flushing confidently and coughing at the same time. It worked! I got blood return fine again after that.
Sugar is my secret ingredient for spaghetti sauce. Pepper would be your "spicy" flavor rather than basil. Nice job Peter. I too, love day-old sauce. The flavors all marinate together so well and soak into the noodles (I suppose).
THUMBS UP FOR PETER!!! He's such an amazing support for Mary and I am so thankful that she has him to rely on when she's not feeling good. They're such a power couple
So sorry having issues with medical equipment. I know my issues aren't the same, but like you Mary, I don't know how I could do anything without Wes. Love you & praying
It’s so awesome how much you guys support each other. Especially how much Peter helps you. It really is beautiful. You really motivate me everyday to strive to keep my head up with my illness Mary. You guys inspire me so much. Sending tons of love! ❤️❤️❤️ My fur baby Khaleesi says Hi to Ollie boy. 😀
I do sterile compounding in a hospital and it's always surprising how they have people mix drugs at home and when I do it, I'm completely garbed up in mask/gloves/isolation gown in a sterile hood in a sterile room within a sterile room. Anyways, love you guys ♥️
Not only hospitals have more germs than homes, but also - if Peter mess up and the germ get into contact with the med, it's his fault. But if you mess up, they can sue both you and the hospital. Not to mention that prolonged exposure to many meds that you don't need may cause various health issues. That's why a lot of procedures aren't to provide the most safety for the patients but for the staff as well. My mother got exposed to some drug ~25-30 years ago while she was working as... um... the nurse that assist the anesthesiologist? (Forgive me, I'm not native and have no idea how to put this into translator). She had serious health problems, but not only that - I, born 22 years ago, also have some problems related to this drug! So if that would happen now, in 2018, in a country like America where people sue companies for very little things... Yea. A lot of money. So they prefer to be safer than necessary with all of that precautions they can say "It's nurses fault, we provided as much protection as possible". And not pay at all or pay less.
Your an amazing husband and she is amazing person and strong woman as well just so glad you two have each other to get through the hard times because makes the worldly difference.
In the past I don’t think I truly registered how amazing Peter handles everything. I always focused on how fabulous Mary deals but she’s 100% right, Peter is a superstar.
My friend loves 'fried spaghetti'. I have been a little grossed out at the idea of deep fried spaghetti for years now until I stayed the night & she made it for me. She just really meant LEFTOVER SPAGHETTI heated up in a pan with a little olive oil. 😂😂😂 SO SO much better than the deep fried concoction I thought she meant!
Peter, your sterile technique is awesome .when worked in hospital OB never had to do any of that. Was steep learning curve knowing what was in sterile pack and what worked best when working in nursing home.
Hi, I have been following you guys for about 2 years and I love your videos. I would like more videos based on caregiver challenges. how Peter stays positive and deals with the burden of been a caregiver and staying in the hospital and taking care of Mary
Peter! You are an awesome husband. If you like stewed tomatoes try this: one pound bacon cut into 1 inch pcs. and fried. Remove most of the grease from pan. Add 2 large cans of stewed tomatoes including the juice (I used sliced and chop them up a bit). Cook and serve over spaghetti. My boys love this. God bless you both!
Keep it up you two, just remember it will get better, soon the antibiotics will be over. Don't exhaust yourselves on our account, I hope the port stops giving you so much problems.
Just wanted to say Merry. You're a blessed with a great man of God to Stand By Your Side through all your difficulties may God richly bless both of you and may you continue to get better and better in Jesus name
Im not sure what size needle you use and i know You're used to ports more than i am. But in November i was having issues with blood return so the nurse suggested i use a larger gauge needle. I was using 22Gauge but now i use a 19Gauge needle and I dont have any issues with blood return! 😊 i know everyone is different but i figured it was a good tip!💜😊😊
Peter, the sauce for your spaghetti lookes great! Mary, I think I know why the sauce was spicy for you: when you cook parsley and it gets warm /hot it gets very spicy. So that's why this sauce was spicy. Also, when pepper gets cooked it is getting really spicy. so never put pepper in cold dishes and warm them cause this would not taste good at all ;) Hope you are feeling better now! Have anice Sunday! Britta
I love the Thrift store. Every end of month they do an auction for charity and we go. I always bid on jewelry and old broaches and what catches my fancy. It feels good to be donating to other people in our community who need it and at the same time get things at a cheap price. I love shopping there too for clothes and other nice things. I love old things and it is full of old stuff. LOL
Mary can Peter braid your hair? So its out of way when do port change or when vomit out way. But not heavy or fabric strechy hair bands. Were can have hair back. Braiding l Less pain full stays well when sick ussualy.then haveing your hair in pony tail not hard lay on like pony tail is. As know can be rough with headaches and migraine. I put pony tails more frequent when I braid it need to have more support with headaches. So not just on one pony tail at bottom despite one pony tail okay at bottom ussualy But if need to so not just on one option to.
The lack of blood return, if you recently had a good blood return is usually because your are up against a port wall. This happens quite a lot, especially with the newer and smaller ports and/or double lumen ports, Most likely, although not recommended if you slowly infuse a few cc's there will be no pain of infiltration and you can give it a couple hours to see if it will settle and move away from the wall with just normal body movement and you will get a return. Of course, as you have a bunch of infusions waiting to go you probably don't want to take that time. With the newer ports you just have to be pretty much dead center when you access - making sure you have located the lumen not jut the port edges. If your positive your dead center and against the back wall its possible that your building up a fibrous sheath over the end of the catheter. This can happen periodically as the end of the catheter is not open, but there are a series of holes along the sides of it near the end. The body sees the catheter a foreign body and build the fibrin around it as a protective mechanism. Because of how a line functions, fluid going in just push the fibrin out of the way and you infuse easily but when you pull back for blood return the sheath closes over the holes and prevent blood return. A good port nurse could probably work it with some heparin and get blood flow back or else you would nee dome Cathflow to open you up - also something that has to be done by someone trained to administer it. However, if you have been getting good flow back prior to dislodging your needle the chances are that the access was just where the needle came to rest up against the wide wall of the port. Huber needles are easily blocked if against a side wall and why you have to really make sure you are in the center of the port going in - the tip is fine against the bottom (back wall) of the port and that is not where the opening is in the needle. Now I am going to sound mean - but Mary - you need to wear a mas!. I know you don't think you are breathing on your site during access and I know you are trying to not breathe on yourself while the port is accessed but you are. One, the port is not safe until the dressing is on - its not okay to breath on it just cause the needle is in. You will see that you changed head tilt and direction as soon as the needle was in and looked down, breathing on the area and contaminating it. We also are not really good at being 100% directional about where air goes even when only leaving our nostrils and our mouths are closed. Its also not just your port site that you are contaminating. You are breathing in an area that has had a sterile filed set up and thereby contaminating it. There is a reason that masks are not removed until the end of the procedure and the dressing is on and that is so that nothing bad is trapped up under that dressing. In any procedure that requires a sterile field masks go on before anything that is sterile and need to remain sterile are opened and no one without a mask is allowed in the vicinity until the field is broken. If if you do manage to not breath on your port site you are breathing near the field and all sorts of bacteria is falling on everything that is supposed to be sterile when it touches you. Its not just about the port site having to stay sterile but everything. On top of that - you are the person at the highest risk of contaminating your port - as you have a running sinus infection or a propensity for them. This means that every time you breath out through your nose everything with a 3 foot circumference around you - no matter what direction you are pointing your nose in is being contaminated. You are very lucky to have escaped having a problem with your port due to not wearing a mask. I know they are hot and uncomfortable and no one likes wearing them but a line infection is not something you want even a 1% chance of having happen. The little green caps are a very important thing to use, especially if your a patient with infections and prone to infections but to be honest if your not going to mask while being accessed using them is not going to be much help as you are exposing your port system much closer to the port than the green cap every going to help. If regular masks are really unbearable yo can get the newer, face shaped masks with the venting button in the side (they are expensive but reusable quite a few times) and much more comfortable. There is really almost no point in going through setting up a sterile field and everything is you are going to be breathing without a mask on during the whole procedure. In most hospitals an unmasked person in a room where they have a sterile field set up - even if just a sterile tray, i not allowed past the door. This is why even visitors who are sitting far from a patient when a port is accessed (or other sterile procedure is done) are told to wear a mask or asked to leave until the procedure is done - breathing goes everywhere and contaminates everything.
Oh dear I feel your thrift store pain......I wouldalso be bummed to not be able to go in and rummage. I think planning a thrift store visit asap after your all done with IV's would be just the ticket :D Spag Bol is my absolute favourite and I have a secret recipe too.....but I can't eat the sauce anymore because of dietary restrictions :( which really sucks....but I make it with my own sauce concoction its not real Spag Bol but I still call it that and it makes me happy
You guys are doing amazing. Love you both. At my house, the first day the sauce and spaghetti are separate and before we put it away to have leftovers we mix it.
I think the problem with your port is the placement. It's practically in your armpit, and that makes it move a lot. Mines up by my collar bone and while mine moves around a lot in its pocket i've never had a needle come out. Also maybe your needles too short? I hope you get your port troubles sorted out soon
The Flaming Zebra aah😓😓😣😣😣i just got my port yesterday n it feels like its so close to my arm pit..but it has to be on my left side BC us I had two dialysis ports earlier this year on my right side..so I'm wondering if they did that BC us of my heart being right there
I like my spaghetti the second day better and also fried in some butter and salt and pepper. I also like spaghetti with cream of mushroom soup an salt and pepper. One can of soup per 1/2 box of spaghetti or macaroni YUMMY!! I'm also happy that you're all finally home ! Love you bunches Janet from NH
+The Frey Life - I know exactly what you mean about preferring leftover spaghetti. This is going to sound strange, but the best way to heat up leftover spaghetti is actually in a non-stick frying pan. Don't add any oil or water to your pan, but use a non-stick frying pan and heat it up over medium heat. I don't know how to explain how it turns out, but it is less 'saucy'... kind of dry in a way, but still flavourful and yummy. Give it a try!!! xo Heather🇨🇦
You guys rock and Peter you are amazung you look after Mary so well and you guys are so sweet together the love for each other sines through. Hugs from NZ
Peter, if mary ever needs to do IV antibiotics at home again heres a tip, when you draw from the vial and its all out in the syringe dont rest your thumb on the plunger cuz it leaks a bit i always draw the dogs insulin but i dont rest any fingers o the plunger at all it gets wasted
I’d just like to say, I hope I can find a husband just like peter one day! He is literally the sweetest most caring kind of guy and you must feel so lucky to have him!!
When you put stuff in your port, can you taste it? I know when I have IV's I can taste the saline flushes, but I don't remember being able to taste anything when I had a Hickman; then again that's a different thing, so IDK.
Why port why???? I yell this most every time I access. I end up rolling my shoulders and shimmying my chest coughing and contorting my neck to get blood return so I don’t have restick. You guys are great!!! Thank you for sharing your story!!!
I made my husband chili spaghetti. It's a thing here in Cincinnati Ohio. Not positive if it is where y'all are from lol. Glad the port is working good.
Have u ever thought about getting a seatbelt for Ollie? They do make them. I actually had a doggie car seat for my Buddy(R.I.P). He was a toy poodle and was too short to see out the window. It had a seat belt attached to it. I purchased it at Pet Smart. And then there’s harness’s u can buy that attaches to the cars seatbelt system.
And always cook your pasta al dente Which means " too the tooth" so it has a good bite...8 min is usually good.And if you are making an olive oil and garlic combo with no tomatoes use some of the pasta water to add flavor..just a ladle full.garlic ,olive oil and broccoli sauteed is delish!
when i was a kid my dad would put brown sugar in the spaghetti sauce. it works so well. we stopped doing it just so help with weight loss and to cut down on added sugar
I saw Ollie in the Friday BLB email today!! Yay Ollie! Now you guys made me hungry for spaghetti.....GF noodles and sauce will be dinner tonight! Cheering on from Chicago!!
I like to make the noodles and sauce in the morning and then mix them together in a deep casserole dish and cover them. At supper time I put grated cheese on top then put it in the oven for half an hour. The noodles really absorb the sauce and its like leftovers but better!
You could have the start of a fibrin sheath.....this happens to mine sometimes. I got to the ER for Cath Flo and it gets my port back to flushing well and giving a good blood return.
My port hasnt had blood return for like a month. We've done cathflo like 6 times since getting this port. It flushes, infusion, etc with no problem. I have the fibrous sheath on the tip of the port that causes no blood return. It's SO annoying
I always mix my spaghetti sauce in. I started doing that when our kids were little because, let's face it, spaghetti is messy enough with little ones. We still do it and love it.
SAME problem! I'm like how is a needle or tube blocked in one direction? I was flushing fine, but no blood return, and eventually return, but then we couldn't draw blood 😕 my stupid port also. And I totally get the thank god the skin the got used to it, I used to scream, now I sometimes don't feel it. So much better... except for that blood return blah
I agree about healthcare professionals being nice. I had blood work done the other day and the guy was downright rude. Peter is quite the medical person. Multi faceted. I like spaghetti either way.
WHY, Port, WHY!!! Hahaha. Do you ever talk to inanimate objects? Ok- today’s question- do you like spaghetti the first day or the second day better?
The Frey Life always better the second day!
I also speak to my port and my forever 6hr IV I drag around with me every 2 days!!
The Frey Life I love spaghetti first day and second and yes I speak to my IV drip when I was in hospital as it not nice to have and my vanes is very hard to get at and they take 1hr to do it and I scream in pain
I always talk to inanimate objects.. lol .... and 2nd day for sure!!
Both equally I think.
Yes I always talk to things that won’t talk back. And first day 🍝 for sure
back in april of 2017 i was diagnosed with hyperthyroidism and was passing out a few times a week. i remember one night where i had a 24-hour heart rate monitor on (this being my first taste with medical equipment), laying in my bed, watching these vlogs. i had been following you guys for a while now, but something really hit me that filled me with both sympathy and comfort. i was comforted in knowing that someone i looked up to was going through and feeling the same things as i, just in different forms. every day i get better and stronger with that comforting feeling and the help of your confidence
I love watching raw videos like this. You are both working so hard and it amazes me the knowledge you have accumulated!! When the port had no blood return you looked at each other and an entire conversation went on in just that look. No freaking out you went into problem solving mode. I look up to both of you so much! Keep being amazing
I had a long-haired standard poodle named Quake, and seeing a standard poodle as a service dog makes me so extremely happy, because they have the sweetest nature
Having worked with VAD's (and Implanted Ports since the days when we were researching them as a feasible alternative to central lines), let me say that you probably were one of those lucky patients that had a very good run in the beginning instead of having more of a normal up and down relationship with a port. Much of what you are dealing with now would be the more normal experience and just having one type of needle that meets all needs would be a rarer and not what most people usually deal with. That, added to older techniques in dressing care, many of which we have found out will tend to lead to a dislodged needles - some of these could be your issue. Ports are a wonderful step up in science over the Hickman or Broviac central line setup in that they really have made long term venous access so much safer and a good deal easier and more comfortable than having to deal with a central line but they are not without their issues. Much of what you would have learned and been taught when you got your original port would have been 'central line care' which was what we went with when trying to determine how best to care for ports. Over the years we have learned things and started doing things differently - may things that worked well for central line care actually caused issues for ports. First, if you are having issues with a needle that moves about, displaces or comes out with just normal body movement then you do have an issue. No Huber needle is going to stay secure under every circumstance but simple normal body movements should not be dislodging a needle like that. The most common reason for this is the needle itself and or how its cared for/dressed. I know that you have a needle that is a favorite because of how it lies on your chest but for all extents and purposes that really is going to have to be the last thing to consider. The needle that you use is dependent on many factors and need to be chosen as the appropriate one for the job, and while comfort is a consideration, it may be that the most comfortable needle or the one that shows less under a t-shirt is not the needle best used for the therapy you are getting or for the port you have, or simply for how you live your life. Sometimes you are going to have to deal with needles that have a higher profile or create a lumpier dressing site or the exposed area is larger than your used to, because that is the correct needle choice. Knowing what needle is best under what circumstances also takes on some level of trial and error until you know, but which one feels the best is only one consideration and given that every access is a risk of infection you want to limit how many times your deaccessed. Dislodging a needle should be a rare occurrence and even rarer should be any infiltration caused by a port needle slipping out of the port. The gauge you use is usually only of concern depending on what is put through it but deepening on the antibiotic you are using, especially if its reconstituted then its possible gauge could be one issue. Make sure that you are using a 20 gauge needle and no higher gauge (aka smaller needle) for antibiotic therapy. Usually an 18 gauge is needed for infusion of blood products and 20 is fine to accommodate antibiotics or TPN lipids and for blood draws.. After gauge you need to consider length. Many people are under the misconception that shorter is better. Not sure where that arose from among those with ports but you actually want the needle long enough to be against the back of the port and not only there when you first insert in and then have it pulled back away when you let go and take a deep breath and the chest wall pulls the needle back from that 'all the way in' position. The depth of a port is dependant on the patient, patient weight, the musculature in the area they make the pocket and other factors. A surgeon or radiologist familiar with placing ports can pretty well gauge the depth of a pocket and depending on age and condition of patient really works at that prime 1 inch distance. When your port was put in the person that placed it should have documented the depth they placed it at. If they said 1 inch then you need to be using a 1 inch needle even if 0.75 does not stick up as high or does not feel as large. The same is true if they said 0.50 , 0.75 or 1.5. You need to stick with the length that was sized for your port. Needle length is not an arbitrary choice in this situation. If you feel like there is a gap between the skin and the base of the needle there are dressing considerations that can deal with that but be careful as padding a Huber needle can cause it to dislodge and infiltrate too (more about that later) The next thing to consider in the flow rate and pressure that the needle and port have to deal with. From Bard, themselves, you have both the power injectable Huber needles and the ones that are not for power injections - with a wider range of styles. The power injectables can handle up to 5ML/sec of fluid in connection with a power port and 300 psi of pressure - usually not something encountered except during CTs/MRIs or major trauma situations. The other Bard brand needles - the MiniLoc, SafeStep, EZ, LiftLoc and HuberPlus all have different profiles and different specifications from wings to no wings, some have safety covers while other do not, some have extra padding and so on. Bard pretty much manufacturers a Huber needle designed to meet needs and preferences every patient. For example, the lowest profile ones, the Huber Plus and the SafeStep give you the choice of whether you want wings or not. These needles can't handle a pump that exceeds pressure of 25 psi without leaking or dislodging the needle. Also fast gravity feed can be an issue also if you let it run too fast. Some ports don't do well with gravity fed systems and the better secured a needle you have makes a difference. Most home health services do supply Bard manufactured needles - those listed above - so even if you get a generic appearing needle the packaging should say that Bard manufactured it. However, some companies do use generic ones as a cost savings measure and often these are manufactured overseas. These often use the same naming convention as the Bard needles (or a very similar name such as Mini-Loc as opposed to MiniLoc or SafetyStep instead of SafeStep) but will not say they are manufactured by Bard on the packaging. For things like monthly accessing your port for maintenance, access for a blood draw or a very short therapy they can work fine but if you staying accessed for long periods, getting a great many infusions so that port is very active you probably want to switch to a Bard product. If your Huber needles are not manufactured by Bard and you having dislodges and infiltrations then you may want to consider actually changing to a Bard manufactured needle. Most pumps should not exceed 25 psi but can vary and if not manufactured to that standard you maybe having needle issues simply because the fluid pressure is dislodging you slowly during infusions. There should always be a bit of a gap between skin and needle base. Don't make the mistake of going to a shorter needle to eliminate that gap. You want a tiny bit more needle between the skin surface and the base of the needle so that the skin surface is not always in contact with and pushing against the needle base. Without the gap you can easily pop a needle out just by rolling over in bed. The gap can then be filled with the recommended GuardIVa disk which is a sterile chlorhexidine-impregnated sponge dressing that is about the size a nickle and is split from the center hole to the outer edge so it can be slipped around the needle under the Huber needle base. This gives you some extra padding but without the risk of causing a dislodgement which using folded or split gauze can do. Its also the first major line of defense against infections at the port site and/or in the catheter. Many people mistakenly think that sterile gauze will remain sterile under a dressing and around a needle and that its safe to pad a port with gauze. Of course, in the 'old' days that was how it was done but we have learned a lot since then and we no longer treat ports in the same manner we did - back then our experience was with how to care for and treat and dress a central line and so we used those techniques but we have learned a great deal and even in the past 3 years port care protocols have changed in many ways. Using sterile gauze under a occlusive dressing and thinking it remains sterile is not really the case. Although, the skin is cleaned well when you access the port its not really sterile and so as soon as the gauze touches it there is contamination and the gauze has nothing that its treated with that prevents infection. Also, under your dressing the skin does sweat and oils and other things rise to surface and this is all collected in the gauze and through the gauze to the needle and access site. Gauze also can easily move under a dressing, even if not noticed by you it does swell from any moisture or oils from the skin trapped under the dressing and especially if folded rather then split, it can move and bunch up and shift between the layers. Simple gauze movement can be enough to dislodge a needle, especially if your using a shorter needle than you should. The Huber needle moves a bit all the time, as you breathe, move you arms and upper body and so on, so if you have anything under that dressing that has any bulk at all and thicker then about 1 mm it can cause the needle to dislodge and this why gauze shouldn't be used as padding under the dressing beside the increase chance of infection, either bacterial or fungal. You can also use the sterile re-enforcement strips that come with the occlusive dressing to make a X across the needle and secure it to the skin after putting the disk on and before the dressing.
Actually crying that you're little family is home again.
Watching how delicate Peter is with you Mary and how you bloom with joy around him.
I'm thankful for your videos, they make me want to be strong x
I have a port, and word on the street at my infusion center is that there tends to be more problems with ports placed by surgeons and it's better to have them placed by interventional radiology.
You two are adorable. The sterile field kiss melted my heart. ♥️
You are very blessed to have such a sweet devoted husband hope you get back to feeling better soon sweetie God bless you both
I WANT A PETER IN MY LIFE! He is so calm, supportive, and just awesome!
Thinking of you often and hoping you are feeling better each day! Peter, you are an excellent caregiver! Blessings to the Frey Life!
Crazy how different port access procedure is between countries and even just different hospitals.
My heart broke as soon as I saw the title of this video... hadnt even watched it. Sending you a little extra strength today.
The Frey Pharmacy Open 24/7
7:55 I'm proud of BOTH of y'all, Peter!
When my port flushes fine but doesn’t get blood return, I think it’s because I get a fibrin sheath on the end of the line that makes a suction effect when pulled back. The latest time, my nurse recommended turning my head away from my port and flushing confidently and coughing at the same time. It worked! I got blood return fine again after that.
Amy McRae mines the same, it flushes great but no blood return
Sugar is my secret ingredient for spaghetti sauce. Pepper would be your "spicy" flavor rather than basil. Nice job Peter. I too, love day-old sauce. The flavors all marinate together so well and soak into the noodles (I suppose).
THUMBS UP FOR PETER!!! He's such an amazing support for Mary and I am so thankful that she has him to rely on when she's not feeling good. They're such a power couple
Mary you have such an great husband that helps look after you when your things play up.
So sorry having issues with medical equipment. I know my issues aren't the same, but like you Mary, I don't know how I could do anything without Wes. Love you & praying
Mary’s right! Adding sugar to canned tomatoes helps to reduce the “tinny” bitterness xxxxx I add 1-2 teaspoons to a tomato based pasta sauce. xxxxx
I do infusions at my job and I loved seeing Peter mix Mary's meds! You're a great infusion nurse Peter!
two thumbs up for peter and mary. Peter for being a wonderful caring hubby and Mary for fighting the infection and CF like a champ!!
It’s so awesome how much you guys support each other. Especially how much Peter helps you. It really is beautiful. You really motivate me everyday to strive to keep my head up with my illness Mary. You guys inspire me so much. Sending tons of love! ❤️❤️❤️ My fur baby Khaleesi says Hi to Ollie boy. 😀
peter would make a good med tech
maybe peter should go to school to become a med tech
I do sterile compounding in a hospital and it's always surprising how they have people mix drugs at home and when I do it, I'm completely garbed up in mask/gloves/isolation gown in a sterile hood in a sterile room within a sterile room. Anyways, love you guys ♥️
Not only hospitals have more germs than homes, but also - if Peter mess up and the germ get into contact with the med, it's his fault. But if you mess up, they can sue both you and the hospital. Not to mention that prolonged exposure to many meds that you don't need may cause various health issues. That's why a lot of procedures aren't to provide the most safety for the patients but for the staff as well. My mother got exposed to some drug ~25-30 years ago while she was working as... um... the nurse that assist the anesthesiologist? (Forgive me, I'm not native and have no idea how to put this into translator). She had serious health problems, but not only that - I, born 22 years ago, also have some problems related to this drug! So if that would happen now, in 2018, in a country like America where people sue companies for very little things... Yea. A lot of money. So they prefer to be safer than necessary with all of that precautions they can say "It's nurses fault, we provided as much protection as possible". And not pay at all or pay less.
Amazing husband you have . He’s is truly a gem take care god bless you both .
11:29, Shay Butler reference ! Lol In the parking garage song! lol love it!
Your an amazing husband and she is amazing person and strong woman as well just so glad you two have each other to get through the hard times because makes the worldly difference.
Your home is so beautiful! Please do a home tour! Sending love.
i wish I could give 3 thumbs up to Peter for his caregiving. Mary, I know you are so grateful for the husband you have. Hugs.
In the past I don’t think I truly registered how amazing Peter handles everything. I always focused on how fabulous Mary deals but she’s 100% right, Peter is a superstar.
My friend loves 'fried spaghetti'. I have been a little grossed out at the idea of deep fried spaghetti for years now until I stayed the night & she made it for me. She just really meant LEFTOVER SPAGHETTI heated up in a pan with a little olive oil. 😂😂😂 SO SO much better than the deep fried concoction I thought she meant!
Peter, your sterile technique is awesome .when worked in hospital OB never had to do any of that. Was steep learning curve knowing what was in sterile pack and what worked best when working in nursing home.
Speaking of ports- I just accessed my new port myself at home for the first time today!
Peter and Mary, You two are such an adorable couple! God Bless you both and sweet Oliver.
I had to make spaghetti sauce from scratch also yesterday when surprisingly I didn't have a can on the Shelf. Turned out really well thankfully!
Watching you guys somehow never gets old.
You have the best hubby ever. You are both very blessed
Hi,
I have been following you guys for about 2 years and I love your videos. I would like more videos based on caregiver challenges. how Peter stays positive and deals with the burden of been a caregiver and staying in the hospital and taking care of Mary
Hi guys! I shared your video with a long time friend of mine who also has CF. :)
Peter! You are an awesome husband. If you like stewed tomatoes try this: one pound bacon cut into 1 inch pcs. and fried. Remove most of the grease from pan. Add 2 large cans of stewed tomatoes including the juice (I used sliced and chop them up a bit). Cook and serve over spaghetti. My boys love this. God bless you both!
5:15 I was laughing at the noise Mary made lol
I have osteosarcoma and have a port for chemotherapy and I alwayssss have issues with mine. It totally sucks. 😭
Keep it up you two, just remember it will get better, soon the antibiotics will be over. Don't exhaust yourselves on our account, I hope the port stops giving you so much problems.
Just wanted to say Merry. You're a blessed with a great man of God to Stand By Your Side through all your difficulties may God richly bless both of you and may you continue to get better and better in Jesus name
3:28 I love you, Dr. Peter! Love to your favorite patient and her handsome son, too! :)<
Im not sure what size needle you use and i know You're used to ports more than i am. But in November i was having issues with blood return so the nurse suggested i use a larger gauge needle. I was using 22Gauge but now i use a 19Gauge needle and I dont have any issues with blood return! 😊 i know everyone is different but i figured it was a good tip!💜😊😊
You guys are the modern topanga and cory.
Peter, the sauce for your spaghetti lookes great! Mary, I think I know why the sauce was spicy for you: when you cook parsley and it gets warm /hot it gets very spicy. So that's why this sauce was spicy. Also, when pepper gets cooked it is getting really spicy. so never put pepper in cold dishes and warm them cause this would not taste good at all ;)
Hope you are feeling better now! Have anice Sunday! Britta
I love the Thrift store. Every end of month they do an auction for charity and we go. I always bid on jewelry and old broaches and what catches my fancy. It feels good to be donating to other people in our community who need it and at the same time get things at a cheap price. I love shopping there too for clothes and other nice things. I love old things and it is full of old stuff. LOL
Mary can Peter braid your hair? So its out of way when do port change or when vomit out way. But not heavy or fabric strechy hair bands. Were can have hair back. Braiding l Less pain full stays well when sick ussualy.then haveing your hair in pony tail not hard lay on like pony tail is. As know can be rough with headaches and migraine. I put pony tails more frequent when I braid it need to have more support with headaches. So not just on one pony tail at bottom despite one pony tail okay at bottom ussualy But if need to so not just on one option to.
Stay strong and feeling better soon Mary 💞♥️💛💚💙❤️❣️❣️💚💖💜♥️💚💕💜
The lack of blood return, if you recently had a good blood return is usually because your are up against a port wall. This happens quite a lot, especially with the newer and smaller ports and/or double lumen ports, Most likely, although not recommended if you slowly infuse a few cc's there will be no pain of infiltration and you can give it a couple hours to see if it will settle and move away from the wall with just normal body movement and you will get a return. Of course, as you have a bunch of infusions waiting to go you probably don't want to take that time. With the newer ports you just have to be pretty much dead center when you access - making sure you have located the lumen not jut the port edges. If your positive your dead center and against the back wall its possible that your building up a fibrous sheath over the end of the catheter. This can happen periodically as the end of the catheter is not open, but there are a series of holes along the sides of it near the end. The body sees the catheter a foreign body and build the fibrin around it as a protective mechanism. Because of how a line functions, fluid going in just push the fibrin out of the way and you infuse easily but when you pull back for blood return the sheath closes over the holes and prevent blood return. A good port nurse could probably work it with some heparin and get blood flow back or else you would nee dome Cathflow to open you up - also something that has to be done by someone trained to administer it. However, if you have been getting good flow back prior to dislodging your needle the chances are that the access was just where the needle came to rest up against the wide wall of the port. Huber needles are easily blocked if against a side wall and why you have to really make sure you are in the center of the port going in - the tip is fine against the bottom (back wall) of the port and that is not where the opening is in the needle. Now I am going to sound mean - but Mary - you need to wear a mas!. I know you don't think you are breathing on your site during access and I know you are trying to not breathe on yourself while the port is accessed but you are. One, the port is not safe until the dressing is on - its not okay to breath on it just cause the needle is in. You will see that you changed head tilt and direction as soon as the needle was in and looked down, breathing on the area and contaminating it. We also are not really good at being 100% directional about where air goes even when only leaving our nostrils and our mouths are closed. Its also not just your port site that you are contaminating. You are breathing in an area that has had a sterile filed set up and thereby contaminating it. There is a reason that masks are not removed until the end of the procedure and the dressing is on and that is so that nothing bad is trapped up under that dressing. In any procedure that requires a sterile field masks go on before anything that is sterile and need to remain sterile are opened and no one without a mask is allowed in the vicinity until the field is broken. If if you do manage to not breath on your port site you are breathing near the field and all sorts of bacteria is falling on everything that is supposed to be sterile when it touches you. Its not just about the port site having to stay sterile but everything. On top of that - you are the person at the highest risk of contaminating your port - as you have a running sinus infection or a propensity for them. This means that every time you breath out through your nose everything with a 3 foot circumference around you - no matter what direction you are pointing your nose in is being contaminated. You are very lucky to have escaped having a problem with your port due to not wearing a mask. I know they are hot and uncomfortable and no one likes wearing them but a line infection is not something you want even a 1% chance of having happen. The little green caps are a very important thing to use, especially if your a patient with infections and prone to infections but to be honest if your not going to mask while being accessed using them is not going to be much help as you are exposing your port system much closer to the port than the green cap every going to help. If regular masks are really unbearable yo can get the newer, face shaped masks with the venting button in the side (they are expensive but reusable quite a few times) and much more comfortable. There is really almost no point in going through setting up a sterile field and everything is you are going to be breathing without a mask on during the whole procedure. In most hospitals an unmasked person in a room where they have a sterile field set up - even if just a sterile tray, i not allowed past the door. This is why even visitors who are sitting far from a patient when a port is accessed (or other sterile procedure is done) are told to wear a mask or asked to leave until the procedure is done - breathing goes everywhere and contaminates everything.
Oh dear I feel your thrift store pain......I wouldalso be bummed to not be able to go in and rummage. I think planning a thrift store visit asap after your all done with IV's would be just the ticket :D Spag Bol is my absolute favourite and I have a secret recipe too.....but I can't eat the sauce anymore because of dietary restrictions :( which really sucks....but I make it with my own sauce concoction its not real Spag Bol but I still call it that and it makes me happy
What a wonderful hubby!!! Not sure mine could do all that medical stuff.......
It’s so much easier to go to the satellite locations! Definitely prefer than than going to BCH in the city. Hope today is a little easier for you!
Get well soon! 🤗🎈❣️
Keep going guys stay strong❣️
You guys are doing amazing. Love you both. At my house, the first day the sauce and spaghetti are separate and before we put it away to have leftovers we mix it.
I think the problem with your port is the placement. It's practically in your armpit, and that makes it move a lot. Mines up by my collar bone and while mine moves around a lot in its pocket i've never had a needle come out. Also maybe your needles too short? I hope you get your port troubles sorted out soon
The Flaming Zebra aah😓😓😣😣😣i just got my port yesterday n it feels like its so close to my arm pit..but it has to be on my left side BC us I had two dialysis ports earlier this year on my right side..so I'm wondering if they did that BC us of my heart being right there
I like my spaghetti the second day better and also fried in some butter and salt and pepper. I also like spaghetti with cream of mushroom soup an salt and pepper. One can of soup per 1/2 box of spaghetti or macaroni YUMMY!! I'm also happy that you're all finally home ! Love you bunches Janet from NH
+The Frey Life - I know exactly what you mean about preferring leftover spaghetti. This is going to sound strange, but the best way to heat up leftover spaghetti is actually in a non-stick frying pan. Don't add any oil or water to your pan, but use a non-stick frying pan and heat it up over medium heat. I don't know how to explain how it turns out, but it is less 'saucy'... kind of dry in a way, but still flavourful and yummy. Give it a try!!! xo Heather🇨🇦
You guys are a good team!
I love your beautiful freckles Mary! Also do you or would you ever consider making custom paintings? I would def be interested!
Peter, you are the best husband and such a great caregiver to Mary and Ollie boy. God is watching over you all.
You guys rock and Peter you are amazung you look after Mary so well and you guys are so sweet together the love for each other sines through. Hugs from NZ
Peter, if mary ever needs to do IV antibiotics at home again heres a tip, when you draw from the vial and its all out in the syringe dont rest your thumb on the plunger cuz it leaks a bit i always draw the dogs insulin but i dont rest any fingers o the plunger at all it gets wasted
This is what i call power couple💗.Bless you guys
At 1:58, did the man in the car in the next lane wave as he drove by? I think you were vlog bombed 😂
He did!! Good eye!
Peter is amazing. I would ask if they'd move the port for you if possible. That's the worst spot for it. I'm sorry you're going through this Mary.
You 2 Rock It Together!
I got an extra dose of Ollie today! I opened the email from Better Life Bags and there was a big picture of him at the top of the email.
I’d just like to say, I hope I can find a husband just like peter one day! He is literally the sweetest most caring kind of guy and you must feel so lucky to have him!!
Nice work Peter. Do you have to be sterile when mixing the antibiotics as they go in the port? Learning for my future usage of my port.
I usually finish cooking the pasta in whatever sauce I'm pairing it with
When you put stuff in your port, can you taste it? I know when I have IV's I can taste the saline flushes, but I don't remember being able to taste anything when I had a Hickman; then again that's a different thing, so IDK.
Why port why???? I yell this most every time I access. I end up rolling my shoulders and shimmying my chest coughing and contorting my neck to get blood return so I don’t have restick. You guys are great!!! Thank you for sharing your story!!!
I like to drain my pasta leaving a little water while it is still a little under done. Then add the sauce and put it back on the stove to finish.
I made my husband chili spaghetti. It's a thing here in Cincinnati Ohio. Not positive if it is where y'all are from lol. Glad the port is working good.
Have u ever thought about getting a seatbelt for Ollie? They do make them. I actually had a doggie car seat for my Buddy(R.I.P). He was a toy poodle and was too short to see out the window. It had a seat belt attached to it. I purchased it at Pet Smart. And then there’s harness’s u can buy that attaches to the cars seatbelt system.
And always cook your pasta al dente
Which means " too the tooth" so it has a good bite...8 min is usually good.And if you are making an olive oil and garlic combo with no tomatoes use some of the pasta water to add flavor..just a ladle full.garlic ,olive oil and broccoli sauteed is delish!
when i was a kid my dad would put brown sugar in the spaghetti sauce. it works so well. we stopped doing it just so help with weight loss and to cut down on added sugar
I saw Ollie in the Friday BLB email today!! Yay Ollie! Now you guys made me hungry for spaghetti.....GF noodles and sauce will be dinner tonight! Cheering on from Chicago!!
Youve had so much trouble with that port Mary. That is so crazy
I like to make the noodles and sauce in the morning and then mix them together in a deep casserole dish and cover them. At supper time I put grated cheese on top then put it in the oven for half an hour. The noodles really absorb the sauce and its like leftovers but better!
You could have the start of a fibrin sheath.....this happens to mine sometimes. I got to the ER for Cath Flo and it gets my port back to flushing well and giving a good blood return.
You guys are the cuitest couple💑. Oh and peter is so amazing for always supporting u and just being the best !!!! Love u guys❤💖❤💞💓❤💖🌹
Ooh that looks lovely, enjoy. Don't worry about no blood return mary just keep trying like you did there and it should appear.
What makes water sterile?
Hey I live by that savers! I go all the time!
My port hasnt had blood return for like a month. We've done cathflo like 6 times since getting this port. It flushes, infusion, etc with no problem. I have the fibrous sheath on the tip of the port that causes no blood return. It's SO annoying
I always mix my spaghetti sauce in. I started doing that when our kids were little because, let's face it, spaghetti is messy enough with little ones. We still do it and love it.
SAME problem! I'm like how is a needle or tube blocked in one direction? I was flushing fine, but no blood return, and eventually return, but then we couldn't draw blood 😕 my stupid port also. And I totally get the thank god the skin the got used to it, I used to scream, now I sometimes don't feel it. So much better... except for that blood return blah
Why does it feel like the port a cath virbrates sometimes, do you know?
Your hair looks nice Mary; what kind of shampoo do you use pls.?
The rock starest of all rock stars. Thank you Mary - I will be using that today
Vanqimicin is no joke. That stuff knocks me on my behind. Not to mention blows thru ivs.
Peter be a great Nursing Assistant. Have you thought about getting a 2nd certification as an NA? Pastor/Nursing Assistant Peter Frey.. Nice :))
I agree about healthcare professionals being nice. I had blood work done the other day and the guy was downright rude. Peter is quite the medical person. Multi faceted. I like spaghetti either way.
When I was a teenager I use to eat cold spaghetti before I went to school. Italian food is my favorite.