The chemo Abby took that most likely tanked her bone marrow is ARA-C. Abby got the last dose of it on last Thursday. It takes most patients 21-28 days , after their last dose, for their bone marrow to recover. Abby is not a "normal" patient, so it may take her even longer. We could be in the hospital a while.
Abby's body is making zero white blood cells and she has an infection in the skin around her G-tube. The wound is looking worse everyday. As the sore is getting bigger, it is more painful. They doubled the amount of Morphine Abby is getting continuously. I am so thankful they are keeping her comfortable, but I really wish she wasn't going through so much right now.
Thank you so much for praying for me and for Abby. Last night was tough, but I felt much better in the morning. It looks like my stomach problem was just mild food poisoning. Good news, because then Abby won't get sick. Bad news, because we will be eating out of the hospital cafeteria for weeks to come. I am not the only one who has gotten food poisoning here. I am so thankful Abby is getting most of her nutrition from a feeding tube.
Honestly, we are wiped out today. Last night we had to do several painful dressing changes, and change the dressing on her port. The infusaport infuses medication into a large vein, near her heart, so an infection in her port would be very bad. Abby's infected G-tube is VERY close to her port. I am having the hardest time keeping them both clean. At 4:30am her needle came out of her port, so she had to be stuck again. The great thing was she slept through 95 % of it and didn't wake up until it was done. Praise God.
I know that there are many people reading this blog who have children with medical problems or who are in the medical field. I would love to get your advice. Abby is VERY allergic to tape, so keeping a super tight seal around her dressings are impossible. Should I ask for a PICC line in her opposite arm until her G-tube infection is healed? I think it would be so much easier to keep a PICC line clean. Traditional IVs aren't an option, because Abby's veins are pitiful.
I hate to do another procedure on Abby, but if it can help avoid a blood infection, it would be worth it. Any thoughts?
64 comments:
No advice to give, I am sorry.
But I do have lots of prayers for your family and your sweet faced girl.
Man.... I remember going through something like
this with my mother, who had pancreatitis and was
in the CCU for ten weeks. She was hooked up to
all sorts of things... the PICC was a good choice for
us. But Abby is so weak...
My husband is a paramedic... he wondered if you
were trying the "hypoallergenic" tape around the
wounds... ( we assume you might... it doesn't stick
well does it?).
We will be praying for you, and will ask my
husband's Dr. contacts at a nearby hospital he
runs calls to what they think... Get back to you.
Hang in there!!! We are praying early A.m, lunch,
and P.M for you. I hope Brent figures out what
those areas on his skin are....
Kathy
I am not a doctor nor a nurse.
But I do have a chronic illness requiring many hospitalizaitons.
I have had multiple PICC lines, and they are painless.
Granted, I'm not a child, but I never felt anything.
And so easy to take care of.
So my unqualified opinion is YES to the PICC.
I would ask for a PICC Brent--I think it is a good idea and something worth talking about with her docs. Gavin has had both a port-a-cath and a PICC line, and we love PICC lines waaaaay more. Our needs are different than yours, but the issues are kinda the same for anyone that uses them.
Gavin's port was right above his heart--as close to it as it could get, and he did get an infection--and it happened twice because once you get bacteria in the port reservoir, no matter how much vancomycin you use to treat the infection, it is almost impossible to get rid of the bacteria completely (this particular bacteria likes to colonize on the plastic of the port reservoir.).
So 4 weeks after we thought it was gone and he's all better, it came back and started all over again. It was awful. Both times the infection in the port traveled to his bloodstream but we were blessed in that we got it so early that he didn't become septic.
After the port infection came back, the port was removed and we have used PICC lines ever since. He's only had the one port (and we wouldn't put it back in til he was a teenager!) but he has had 6 PICC lines--and none of them have become infected.
They are harder to secure, and the downside is that if it comes out it is a big ordeal to put it back in--opposite to needing to re-access a port (although for a 3 and 4 year old, the ordeal is equally bad for them). Gavin is really allergic to tape too, so we had to play around with which one was going to work and do it loosely too.
We would loosely secure it with tape, then cut the foot off a sock and put the sock up over his arm to protect it from moving. He still had reactions to it but it was better than any other option.
His veins were blown too, so a peripheral wasn't gonna happen. Even if it did--tape is tape no matter what you put it on and where you put it.
We would put gastrocrom on his skin during dressing changes and that always helped soooo much with the itchiness caused by the tape, and by removing it (removing it can irritate more when you pull off).
Overall though, we will always choose the PICC again and again until he is old enough to make his own decision. (This is something he will need forever).
For Abby now, it may be a nice break from all the needle accesses that need to be done with the port....and it may keep her from getting the infection at her g-tube site. Needless to say, if it did spread to her port, and then her bloodstream--well, I dont even have to say it. Saying it would be a big deal is an understatement, especially because of the condition she is already in.
(((Hugs))) to you and Michelle--I'm praying for you!
I am a pediatric consciouos sedation RN. Not so sure that a PICC is a great option, seeing as her veins are most probably "shot" and they might not get the PICC in. Maybe a central line near her neck would be a better option, though a surgical procedure that they might not agree to seeing as her counts are pitiful. are they using mastisol to aid in the
"stickiness" of the dressing? email me if you would like to chat further...
Riggs Family,
Our son has battled leukemia three times now the last ending with a bone marrow transplant (successfully! PRAISE YOU JESUS!!) We have a terrible time with skin issues. We have found a skin barier called Cavilon. We also used the hypafix instead of the other clear bandage. We would be glad to share ideas that we have tried over the past 11 years with you. Hang in there! God has you in the Palm of HIS Hand!
Trusting HIM unconditionally,
Tammy Reams
www.caringbridge.org/visit/chandlerreams
trreams@hotmail.com
Sorry if you get this twice - but blogger is being strange - what a surprise right!
Michelle I don't have any advice but praying you find one that is a good non painful solution quickly for Abby!
Love you,
Jill
Brent/Michelle,
My daughter was in the hospital with bacterial meningitis and had many of the same issues that abby is suffering right now. Infected g-tube being the primary issue (at one point) and her doctor was the one who suggested a picc line. I don't see what the harm is in asking abby's doctor about the possibility of putting a picc line in - it would be easier to manage as far as cleaning and keeping clean goes...
Also - I (and my daughter) are allergic to nearly every adhesive. She can tolerate the tegederm for very short periods of time - which didn't help much with frequent bandage changes... but she was able to use a silk tape that the hospital has. I could probably find the name/manufacturer if you are interested. Her doctor had to hunt for something that didn't just cause her skin to break down... poor thing can't even wear band-aids :(
If I can be of help please feel free to contact me jcgmurphy@comcast.net
Christall
oh, yuck! I am glad that it was just you, not Abby. (well, you know what I mean...I AM sorry you got sick but Abby would have been worse!) I do think that it would be all worth it, just to save her "healthy"--or at least by Abby standerds. Less sick.
Praying that, as Angel Katie would say, abby gets "no more STUPID CANCER!!!" :) I also pray that the food at the hospital stays a-ok.
Love you all!
Picc line with TPN.....sounds the way I would go.....except how do you keep the PICC in place without tape? It needs a good seal with a dressing (tape) to keep infection out.
I don't have any advice, but know that I am praying!
I've been following Abby's story for a while now. I work in the hospice field. I'm not sure if this will help or not...but I will share with you something we've done in the past (creative thinking!) that has worked for our patients. There is a bag with a circular open area that seals around the circular edge...a colonoscopy bag. You place it over the exposed area to "catch" the feces. But, you can also put that over a G-Tube to protect it and the surrounding areas if tape is problem (or if your patient is prone to pulling at the tape/dressings). It is sticky upon removal, but not too much so that it would hurt Abby if she has some pain meds on board. The hospital should have some, it's worth a try!
I am a nurse too and I think that a PICC Line sounds like an idea worth trying since it will definitely be less painful for sweet Abby and will give the other areas time to heal...not to mention avoiding an infection to her blood. It has been awhile since I have worked with a PICC Line, but if I remember correctly, they are fairly easy to maintain and keep clean. Abby is so blessed to have such a wonderful support group and a wonderful loving family. We continue to keep Abby and your family in our prayers. Praying for Abby's healing and her pain to subside.
Hugs and Many Blessings,
Tammy (Kayleigh's Mommy)
I think a PICC line is a great idea. That way you won't need to keep her mediport accessed, and it's better than a central line (for infection purposes). Praying over your family. Cheryl Dreyer
I am not a RN or Dr; but my husband has had pic lines, ports, etc. that I have had to all maintenance on for months while he was having home health care. I would most definitely ask the question of Abby's Dr. and ask him/her to specifically weigh out the pros and cons of moving it with you. If the infection is dangerously close, I would even ask the nurses to page the Dr. so he/she could come in and take a look at it sooner than later.
If I have learned anything in the years of medical situations it is that you have to be proactive and informed. Regardless of how wonderful her actual doctors are; they are in and out so quickly.
We are praying that God would be filling you with a Spirit of wisdom, revelation, and knowledge (and I know we are not alone.) If things are coming to mind, please check them in your spirit first; but then act-knowing that we are praying specifically in this way for you & Brent.
Love & HUGS!
Shanda
I don't have a particularly sick child, but I do have a latex allergy. Being that she has not immune system and the line is soo close to the infection---just one little contamination from the wound to the line could be very dangerous for her....more dangerous, I imagine than putting another line it. It is much easier to treat things, I would think, to treat things that might come up because of putting a new line in than a blood infection. You will get through it and know that whatever choice you make, I am sure that it is the right one.
I have no advice, but I am covering your sweet girl in prayer. You are amazing to be so involved in her care and proactive to do everything you can to keep her as healthy as possible. We are praying for you all!
Hi Brent! I have a rare lung disease and I used to get PICC lines all the time for IV antibiotics. I now have a port to avoid having a PICC line placed so often and ruining my veins.
I can understand how hard it must be in keeping the sites clean. When I first read you post my 1st thought was if they could even place a PICC now? I have not been through near what Abby has and my PICC lines were getting harder and harder to place.
Do they use the ultra sound to look for a vein when placing the PICC? If so I think it would not hurt anything to have them at least look to see if one can be placed.
I have issues with tape too. Some of it makes water blisters on my skin. I pray that her tape issues does not cause any more problems.
Praying for your family. You know her best and you will make the right decision!
I just wanted to say that smile is just beautiful! We are still praying for you all! If you are getting food poisoning from the hospital cafeteria you may want to call the health department. Oftentimes they don't get involved because people think they have the flu. If they are cooking for the patients too that is really scary to me!I was a lunch lady for elementary kids for 8 years! Food poisoning freaks me right out!! Praying Abby starts making WBC quickly so she can go home! I loved the Travis video! Made me cry too! What a sweet young man!
I have never responded on your blog before. We are a foster family that parents only special needs children and I am a big pic line fan IF they will watch it carefully and make sure it doesn't infilltrate. It doesn't happen very often with PIC lines, but it has happened to our children before and you don't want anything going through that line to end up in the wrong place.
Good luck and our family prayers are with you.
Marilyn
I would definitely ask for the PICC line. If she is a hard stick, then is would really make things easier. Poor girl.
The tape is a tough one. I am trying to remember from my hospital days what we would use on the super sensitive kids. I remember they used to make these dressing that had a base to them and that stayed on the skin permenantly (or at least for a week or so) and then a dressing that needed to be changed daily was put on top - so tape was never being attached and detached from the skin several times a day. Maybe something like that could work for her?
Good luck.
Poor sweet Abbey!! Still praying for God's blessing and complete healing on your little girl...
I think a PICC sounds wonderful and like you said much easier to keep clean. Maybe they could give a healthy dose of Morphine prior to the procedure so she could "rest" through out the procedure? After the PICC is done, de-access the port until the infection is better. No matter what you do - you know you will be second guessing yourself.
Kentucky Cooks are praying for you all.
I wish I had some advice, but I don't. I just want you to know that I am continually lifting you and Abby and Brent and family up throughout the day and night. I will pray that God sends you the right people who know the answers to your questions very soon. Stay strong (and maybe have Brent bring you a sandwich for a while - yuck!)
Love in Christ,
Sherrie H.
I am a pediatric oncology nurse and due to the fact that the infected g-tube site is in such close proximity to the port site, I can understand your concern. However, any 'invasive' procedure (like putting in a picc) comes with its own risks due to the fact that Abby's immune system is so comprimised right now. Definitely discuss this with your doctor to determine which option comes with the fewest risks. Also, has the sore on Brent's are been tested for MRSA?
Michelle,
If you need anything I'm only a phone call away. {This includes food delivery too!}
Erin
PICC lines are great...but definatley not long term...usually they have a 6 week life span...if you think that you wont need it again in 6 weeks time...then thats great!! In the meantime though you are still going to be fighting the battle between the gtube adn the port and spreading infection, but alot easier since the nurses etc wont be constantly accessing her port for meds...definlatey not a bad a idea!!! and from what i have heard from my patients (as an RN) they are any more uncomfortable to be inserted than regular IV's and alot more stable!!
Good luck, and praying hard from Canada!!
Roxanne F
I would go with a Picc line if it was my child. My son has had a PICC line and they secured it with stitches so this would also eliminate using tape and this would be placed away from where her infection is. The only issue I can think of is of her reaching up and scraching it and it coming out. I know you don't want to do anything more on her but you have to look the likly hood of a cross infection.
Glad that your feeling better. Praying for comfort for Abby and Good rest for you and Brent. Hugs
my mother has cancer has had terrible bed sores that the medical profession could not heal. we used aloe vera gel and the sores healed and the skin was smooth and not two/three inch diameter and 2/3 inches deep sores. if you use it, get as high strenght as you can find. the medical profession may not like it, but it worked on my mom. i dropped a roast on my upper thigh and had a bad burn that a pharmisist said i needed to see a burn specialist. the burn was about six by 12 inches. with aloe vera, i do not even have a scar. God bless you and you are in my prayers. ann mackey ammackey@windstream.net
Our son had a blood disease called neutropenia so that his body made no (or very little) neutrophils which fight infection. After many rounds with different hematology doctors, we found one who got us started on GCSF shots. It makes the body make the cells needed to fight infection. I pray that these shots are available for your sweet girl. The shots cost approx $1000 each so I think that might be why they don't give them out so readily. I thought it might be worth asking your doctor if you hadn't heard about them already. God bless you and your family. Jesus said, "Come to me all you who are weary and burdened and I will give you rest." Matthew 11:28
bless you heart...i have no medical advice...i'm a stinking engineer. but, i can and will continue to pray.
It definitely sounds worth it to me, but I'm not exactly qualified to answer the question. I'm sure others out there are. I'm glad that they are keeping Abby as comfortable as possible. I think if I was in her shoes, pain relief is what I would be asking for above all else (with the exception of prayer, of course).
Sent out a little something to Michelle today. Wish I could do more, but I'm definitely praying.
Can NOT believe you all are getting food poisoning from the hospital food!!! That makes me mad! Of all places to have spoiled food, it should NOT BE A HOSPITAL! That's just not acceptable. Can you tell that I used to work in hospital administration? I hope everyone is feeling better now and I hope it doesn't happen again.
I don't know if this is the same or not, but my son Luke had to wear a sticky eye patch. The eye dr told us to rub a very small amount of Milk of Magnesia on the sticky part, where that wouldn't be against his skin and it would still stick, it just wouldn't irritate the skin around his eye.
It may be worth trying.
Bless your hearts. We are sending hugs and love and prayers your way!!
The PICC line seems the best way to go at this point. I sympathize with Abby's adhesive problem. If you go with the PICC line, may I suggest something that has worked for me in the past? To get an area to heal that has been reacting to adhesives and infections, I've cleaned with whatever germ killing alcohol wipe type thing I have, then cover the area with Hydro-gel, then cover that with Tegaderm. The tegaderm usually irritates the skin but no where near as much as tapes and band-aids. I have found this to heal infected wounds within 3-5 days.
I'm so glad you're feeling better. I'll pray that the hospital food improves as well as for all of you and your health.
Nancy in NC
I am on bended knee praying for you and your family daily. I took your family on as my family of prayer during the lent season. Abby is a beautiful child who has so much more to offer this world and I can't wait to see her grow into a woman.
On the PICC line question: I am a PICC line advocate. My daughter is 16 and has had numerous surgeries and has a form of MD that has required a number of hospitalizations and she is now old enough to speak for herself and she will also tell you.....go for the picc line! My daughter even will request it when we go to the hospital now because she knows her veins just can't handle IV's. We have had IV's in her feet, legs, between fingers, head, neck, everywhere, I think you will be happier with it especially knowing you will be there a bit longer it will make life so much easier on all of you!
Best of luck and your all mine in prayers til Easter :)
Hearts and Hugs
Marie Wimsett
Our daughter Shannon had a hickman broviac, it was what they called a two luman port. It was implanted in the right side of her chest, accessing the major artery and had two "tubies" off of it. It was great as she never had to be poked, I could care for it at home and she could get more than one medication in there at a time.
Shannon was also allergic to the tegaderm. AND the iodine used to clean the site, made it worse! Her skin was raw. We ended up cleaning with peroxide....and then putting neosporin on the site. No iodine. It helped so much....and then applied the guaze with a paper tape. It is hypoallergenic. Really helps when the skin is breaking down and raw. Makes life much easier.
If I can ever be of help, please feel free to email me at dgomin718@aim.com
Shannons website is www.caringbridge.com/ny/shannong
Keeping you in prayers
Debbie
I recently found your blog via 4 Little Men, and while I don't have any personal advice, I was also recently linked to the Williams Family Blog via 4 Little Men. Baby Jonah has a skin disorder and they've been using some creative techniques... perhaps you might find some ideas there? And Jonah can use our prayers too...
Praying in San Diego,
Bree
http://bleach226.wordpress.com
P.S. Here's their blog link:
http://patriceandmattwilliams.blogspot.com/
I am a dietitan for a home infusion company (home IV and home tube feeding). Though I don't deal with infected tube sites in immune comprimised children ...
Have you tried duoderm and tegaderm for the tube site. Duoderm is a spongy like tape and adhears to the skin and the tegaderm is a clear thin plastic piece that sticks over the duoderm. Definatly use a skin prep and barrier protection cream. Have the GI people been up to look at it?
Also I could be cautious about a PICC line - as a centeral line (directly to the heart) can be another source for infection.
My son is heart transplant recipient and his veins are shot too. A PICC line is the way to go- they definitely last longer.
Praying for Abby in NJ !
One thing that worked on my father, his g-tube was infected and tape left his skin very raw. Domboro was avalible and recommended by his oncologist. I wold pick it up at the drug store. It comes in packets that you mix in warm water( I used cloth diapers to soak up the solution) and just put on the area.
I recently needed some for myself and the pharmacy special ordered it for me
Beth from Boise
We are praying for Abby.....
I'm sorry that I have no advice about this......but I do want to let you know I'm sending my thoughts and prayers......Praying that you are able to find an answer......
Hi y'all,
I've been praying for your sweet Abby & crew for months now-saw your link at gourfamilyadoption.blogspot.com &have checked in every day since.
My son has a urostomy port and a colostomy-and sometimes he has issues with tape just from having it on all the time. We've found that swabbing the skin to be taped with a Bard brand barrier wipe first helps. It may not resolve tape allergies, but it may allow you another option-barrier cream layer, dressing, then the top of a cut off tube sock (the elastic part) or a cut section of pantyhose. A PICC line is harder to put in, but there are soooo many less issues with it. If she's going to stay on the morphine & she's not one to yank out lines, it's so much better. They can also do a PICC line in her leg or near her groin, if that helps.
Praying for strength for the marathon you're in right now...so thankful you have Abby.
anna caudill
flossiemae.blogspot.com
Hello,
I don't know much...But what I do know because I have a sister in the Holistic field that helps a lotof people with cancer & all kinds of health issues ,is that there is a lot of things that can help Abby right now from a holistic pt. Her immmune system can be build up, & white blood cells brought up.
I've tried to e-amil a couple times regarding this but I'm not sure if you got my e-mails?
Are you open to healing Abby form the inside out? Have you done anything Holistic?
I'm compelled to share this with you!
I'm praying daily for Abby- my little Hannah is the sam eage from Guatemala & they look like little sisters!
Would you be open to a 3 way call?
Stay strong little Abby, Michelle & Brent!
Cathy
I am in the medical field, and although I don't have experience with children, I would go for the PICC line in the opposite arm until the G-tube infection is healed, it sounds like the best thing to do at this point..we continue to pray for Abby and for you and for all to stay well..God bless..
We are praying for you Abby, Michelle and Brent. May God bless you tonight and give you peace.
Ok sorry to leave this on here but I can't find an email(probably because I am tired)Brent you and Adam are cracking me up!! Seriously! You remind me of a couple of giggly teenage girls making prank phone calls with your twitter comments!! Sorry that was the first thing I thought of when I read yours and then went to Kayleighs site and saw Adams! Too funny!!! Have a great night! And you are an awesome mentor too by the way!! Your roomie said so on Kayleighs blog twitter! Keep up the Bible verses! I look up every single one!!
Michelle & Brent,
I have had an ileostomy for over 35 years & I am allergic to tape/adhesives, iodine, etc., and have frequently excoriated skin around my stoma under the pouch. Sooooo, with all that (obnoxious) information... a couple of things which routinely work are: "Micro-pore" tape, and "Bag Balm" (the same as they use on cow's udders...)
[Yes, Brent: I have been and I AM known as "The Bag Lady"! for my ileostomy, that is...
My Dad, however, when I started to put on too much weight, would say I "looked like guernsey wading up-stream."]
I know TMI...TMI..., but maybe a little sick comic
relief... you just don't half to publish it...
Serious prayers for Abby and all of you. God protect and comfort you. Grant you a peaceful rest.
Barbara Lyman
My daughter is also very allergic to tape! (She was also allergic to Ara-C! Scariest day of our lives...) Anyway, we ended up wrapping an ace bandage around her Hickman line. We would slather the site in Bacatracin (antibiotic ointment) put split guaze over that and then wrapped her in an ace bandage. Also, when her site was really infected we used silver nitrate patches (given to us by the wound specialist at our hospital) and it soaked up a lot of the infection and helped her heal more quickly.
I hope that helps!
So sorry to hear that Abby is having a difficult time still. I know this phase will be hard and will take a while...just difficult none the less.
Katie had a Hickman Broviac because her veins were also shot. They tried to insert a PICC line twice, but couldn't get it in. she was pretty bruised up from the attempts.
That's all the info I have. Wish I could help more.
Others, who have more experience, have made some great suggestions though. You have some great readers!
I am a surgical nurse and also allergic to tape. But I can use a special paper tape made by 3M Medipore. It sticks well and does not blister.
Ask the nurses to call the OR and ask for it.
I am praying for all of you.
in His grip
Hi there,
I have never left a comment before, but have followed Abby's story. My son had issues when he was born and had to have open heart surgery. He had 3 central lines at one point and after his operation he ended up with a blood infection. He pulled through, but the infectious disease specialist would not even consider a picc line...it is just as dangerous for infections to set in. As it was the doctors were scrambling to try and get rid of all of the lines. Now I am no expert, but after living through an almost fatal infection I would be cautious. Hospitals are breeding ground for bacteria, but since Abby is in isolation the risk to her may not be as extreme. I can't even imagine the decisions that you are faced with on a daily basis.
Blessings
Debbie
Oh... I don't have any advice. Only prayers, but I'll keep them coming.
Michelle,
First of all, we pray for you all daily and we are so sorry to hear about all that is going on. Hopefully and prayefully, this too shall pass and quickly for you all. Bless her little heart!!! As far as advise on a PICC line, (I am a nurse too), I think that would be a very wise choice to keep from having to access that port which is so close to her already contaminated G-Tube site. Since you know your going to be there for an extended stay is just another reason why it makes sense. Good luck in your decision making as you deal with her. I know when your dealing with a sick family member it takes it's toll on you too so, take care of yourself and I'm glad your feeling better. Blessings as always- The Bradley Family
My daughter had a picc line for 5 weeks after a bone infection when she was 5 years old. It made things a TON easier but we didn't draw from the line, only put medications in. I cared for this at home and I have no medical training. My only suggestion about the picc line would be to NOT have it put in the fold of her arm but rather if they do an arm to do it in her upper arm instead of the fold. My daughter's line fell out just due to repeated simple movements of the arm after 5 weeks. The doctor really wanted it in there for about 7 weeks but we did not put it back in after the 5. Her line was put in when she was sedated (had an MRI at the same time) so I don't have any experience with the insertion of the line. As for covering it, we did have some sort of clear rectangle bandage that covered the insertion site but then we covered the whole area with this "tape" so that nothing was exposed. Now this tape wasn't sticky but was stretchy and would adhere to itself--almost like a disposable ace bandage. We later learned from another friend with a picc line that they bought this same "tape" in various colors at pet stores like PetsMart or Petco! My daughter was quite jealous of the cute hot pink covering when she only had a brown or white one!
Karen
mommy to two from Guatemala with one more on the way
I'm a nursing student, but I've also had numerous PICC lines and currently have a port...
I would be VERY cautious with the PICC. As others have mentioned, it is another way for infection to get into her bloodstream. Also, you may need the access later and don't want to "use up" a site (once a line is in scar tissue is created, which makes it harder to get another line in) unless you really and truly need it. If her port DID end up infected, it would likely have to be removed and you would REALLY need a PICC then. There just aren't unlimited sites for PICC lines and they have just as much infection risk.
I would concentrate instead on protecting the port and g-tube sites. Have you ever used Coband? It's similar to like an Ace bandage but not as thick, and sticks to itself. It comes in all kinds of colors, it's also what they use after someone gives blood if you've ever seen that. Anyhow, you can wrap it around her chest to add one more layer of protection to the port site, so it's entirely covered. If you do end up going the PICC route, you can also use this to cover it so tape is not needed. Just put sterile gauze over the actual site and wrap liberally in Coband.
Just a few thoughts from my experience!
I think the majority vote is for PICC...I agree.
I'm praying for y'all....
Stacey in Missippi
I'm by no means qualified to comment on medical advice, but I will say my mother in law (whom just lost her battle to Leukemia Feb 3, 2009) had a PICC line for six months during her battle and I don't recall her having any problems with it. I'm praying without ceasing for all of you and I just adore Abby. She has stole my heart and I love her so much!
God Bless,
Paula, TX
I have no experience with any of the medical stuff, but I do have experience with cloth diapering. So, I was reading through some of the comments and noticed that someone posted about using silk tape. I don't know if it's actually silk, but as a cloth diapering mama, I do know that raw silk is healing to the skin. If a baby has a really bad diaper rash, you can put a silk liner in as a barrier between the skin and anything touching it. That post about the silk tape really jumped out at me - I'd investigate it. We are praying for you guys and I'm hoping to get a video out to you soon - we just got a Flip, but my husband keeps taking it with him - silly guy! I'm going to capture it and get some of our booty shaking on camera to share with you!
Julie in Denton
Abby is such a beautiful little girl and my heart just breaks with you for the pain and condition she is in BUT I continue to pray for her and for your family. I KNOW THAT GOD SEES, HEARS, CARES AND IS NEAR TO HER and I know that HIS WILL shall be done.
I stand as a faithful prayer warrior for your precious little girl.
Hugs and love to Abby.
My PICC lasted almost 7 months. My hospital had a special dressing that I was able to use for my PICC's because I had a severe reaction to the tegaderm that they usually u sed.
I want to say it was micropore or something like that. It was in a roll like toilet paper and perforated as well. You'd roll off the amount you needed (for me it was about 3 strips) and cover area needed. It was white looking and you couldn't see through to the picc line insertion.
Your hospital may know of which I speak. After my picc line was removed, I used a normal band-aid without thinking and my rash grew to ginormous proportions. So I used the special dressing with a gauze over the insertion hole to keep it protected. Oh that reminds me .. if you use this micropore stuff (if that's what it's called) .. you have to put a good 2x2 (maybe smaller for your little peanut) over the insertion site so that the sticky doesn't get caught on the picc line.
I'm also a pediatric nurse and a lot of the kiddos I work with who are allergic to tegaderm use a product called IV 3000 over their port. Not sure if you've tried that or not.
I have to agree with the folks who are saying NO to the PICC. I just worry about another invasive line and the possibility of infection.
Heading off to bed on the West coast and wanted to send you our love and lift you up to heaven in my prayers...your little darlin' is so precious and your family is a blessing. I know you are so tired and worn and still your hearts overflow with so much love and encouragement for all of us! Thank you for your sweet spirit and your hearts that thrive on living for our Lord. God bless you and keep you ~
Hello!
You should really talk to Renee Garcia at www.myspecialks.com . Her Kennedy went through treatment for Leukemia and is VERY allergic to tape. She may have some info and definately experience to share with you.
Praying for you guys in Hou., TX!
Allison Fuller
allie1111@peoplepc.com
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