They are going to hospitalize M for 2 weeks. Because he's still a fosterchild, we have to get court approval for all the tests they want to run that require sedation, so we're looking at end of the month to get it done. We'd like to push the doctor to first of May, but likely won't be able to do that.
So, Dh is going to take his vacation for one week and MIL is flying down for the other week. I'll stay with M at the hospital except when DH trades with me to give me a break. The 17 monther will stay with me, since she still nursing. Dh and MIL will primarily be with the other 5 kids. We're about 40 minutes from the Children's hospital in light traffic and as much as 1.5 hours in heavy traffic.
Morrigu
04-02-2008, 10:33 PM
I'm new to the site - so bear with me. How old is he? That knowledge would influence any answer I could give.
Primm_n_Proper_Baby
04-02-2008, 11:50 PM
:hugs: It's tough - P has been home for almost a full week. He was hospitalized for 2.5 weeks 300 miles away. I stayed with him (and the baby) for one week and hubby did the remaining week & a half.
I hope it's nothing too serious!
What I found really hard. Feeling like I had nothing to do to help the sitation and nothing to do to busy myself & forget that I couldn't help. It may seem like overkill, but do pack an extra bag w/some of yours & M's favorite things to do. The hospital will have movies and video games but it will get old quick.
Depending on the type of hospital and stay be prepared to get NO sleep. When O was hospitalized for a week last year I was sick by the end of it as I had just been run ragged with machines going off all through the night (primarily because he kept pulling out the IVs and pulling off the sensors :) ).
We sent out "family call for help" emails a few days before the kiddo went in. Basically asking for meals to be prepared for us & when I was out of town w/P people to drop kids off at school, pick up and watch until DH got home from work - YOU will be sorely missed while you're with M!!!!
Good Luck! I hope M's OK & I'll keep you all in my thoughts & prayers!!!:hugs:
~Meaghan
TestifyToLove
04-03-2008, 07:14 AM
M is 6 but significantly delayed. And, its not that he's 'sick' per se. But, he has Cystic Fibrosis, which means he's *always* 'sick'. Doctor wants to insert a PICC line and do 2 weeks of heavy duty IV antibiotics in the hospital. And, while he's got us trapped there, he wants to run a slew of tests that his last doctors never bothered with so he can be aggressive and proactive on M's treatment.
The tests which have been mentioned to us have been broncioscope, endoscope, head CT scan, possibly trying to get a dentist to come in and fix all his bottle rot teeth that wasn't finished getting fixed in fostercare and possibly some other things. But, they have to get approval from a judge in M's state of custody since the adoption is not finalized for 5.5 more months and that will take 2 weeks. I don't know yet what all they put on the request for the judge that they want permission to do if they want it. I need to call the nurse today and find out.
val01
04-16-2008, 10:32 AM
My DD has been hospitalized for a total of 5 weeks in her 14 months. We are very fortunate that the Children's Hospital is 20 mins from our house. They do have wireless internet access on most floors - so we brought our laptop, crossword puzzle books, magazines, and a to-do list. For example, I made up my menus for the next 2 weeks and my grocery list, etc. Our Hospital also had laundry facilities and yes, I did laundry there.
For DD, I brought her favorite toys, and some new ones too. I brought her blankie, her lovey, and her sling and stroller. Even with an IV, we walked all over the place with her. She loved it. Most Children's Hospitals also have play rooms - even if your child doesn't go there, you can check out toys and bring them to your room. We "checked out" a swing for DD while we were there and some DVDs.
I would call ahead to ask what "amenities" they have so you can plan accordingly. The more you stay busy, the better. Hugs to you and your LO.
Valerie
mekat
04-18-2008, 05:32 PM
Good Luck! Does your child need a special bed to keep him safe? If so make sure to ask for one before getting there so they can accoomidate him. Check hospital policies such as.
Are parents allowed to stay bedside all night,
Are parents allowed to use the patient's restroom for showers & toilet,
do they have a Ronald McDonald house,
if child needs diapers or medical supplies what brands will hospital provide and what needs to be packed in medical bag for you to provide
Will your home health care deliver to hospital if need be (ok this one you need to inquire with your hhc provider about)
Do they have playgrounds for patient or planned activities (our hospital calls the people and division who handle this Child Life Experts)
I'm sure there are more that I can't think of right now.
Some of these questions can be answered either on the hospital website or via the welcome packet hospitals usually give out. Most of my advice is much the same bring something to entertain child with plus a few new toys to hand out every few days so there is always something fresh to keep the child's interest. If you have special doctor visit toys like me it is a good time to bring them to distract child during procedures if need be. Of course bring stuff to keep yourself entertained as well as necessities for both you and child . Be prepared to spend at least some parts of the night awake because people traipse in and out of those rooms all night long. The worst is when they upset your child and you spend half the night getting them back to sleep only to be woken up again later by more hospital personnel. Please get someone to trade off nights with you every once in awhile so you can get solid rest and a break. You won't do your child any good if you yourself are stressed and stretched so thin you are having trouble functioning. Lastly I notice nurses tend to give sn parents or foster parents in this case a lot more respect due to having been there and done nursing procedures all your child's life. Don't be afraid to speak up and advocate when you think it necessary.
P.S. If the child is a hard stick don't let the nurse try over and over again thus turning your child into a pin cushion, have them call the IV team or whatever your hospital equivalent is. The IV team is amazing, I only wished they employed these people in outpatient labs. Quest tried and tried and tried to get blood from Alec. I was so worried the inpatient IV placement would be difficult but when we got to the hospital the nurse refused to try after accessing his veins and called an IV specialist who got an IV started on the first stick. It was beyond amazing because Alec is always a difficult stick and blood tests for him are nothing but torture.
julucas
04-18-2008, 11:46 PM
M is 6 but significantly delayed. And, its not that he's 'sick' per se. But, he has Cystic Fibrosis, which means he's *always* 'sick'. Doctor wants to insert a PICC line and do 2 weeks of heavy duty IV antibiotics in the hospital. And, while he's got us trapped there, he wants to run a slew of tests that his last doctors never bothered with so he can be aggressive and proactive on M's treatment.
The tests which have been mentioned to us have been broncioscope, endoscope, head CT scan, possibly trying to get a dentist to come in and fix all his bottle rot teeth that wasn't finished getting fixed in fostercare and possibly some other things. But, they have to get approval from a judge in M's state of custody since the adoption is not finalized for 5.5 more months and that will take 2 weeks. I don't know yet what all they put on the request for the judge that they want permission to do if they want it. I need to call the nurse today and find out.
My background is pediatric nursing. I worked in our pedi hospital for 3 years and pedi home health for 2 years before I decided to stay home full time. I just wanted you to know where I was coming from.
Is there no way he can do the antibiotics at home at least part of the time? Perhaps he can be inpatient for the first few days and then you can learn to administer the antibiotics at home? I have taught many, many CF mommies to do this. I am always concerned about keeping kiddos in the hospital if it is not totally necessary. There are so many more bugs for him to get there. All the scans and scopes could (potentially) be done at the beginning of your admission or outpatient.
Do the doctors anticipate he will need IV antibiotics regularly? I am sorry I don't know much background on your son, so I am not sure about his severity or anything. Has anyone ever talked about a port? I personally love ports for frequent IV needs.
Also just to be forewarned, some of the CFers are not allowed to play in the playrooms because of certain bugs they have cultured. Sometimes they are just required to wear masks. I am sure your doctor knows the rules and can inform you better.
As far as nursing (:giggle: nursing staff that is), know that you are allowed to refuse a certain nurse if you need to. From my experience, pediatric nurses usually LOVE their patients and families, but there is always that one off person. It's important to know your rights as a patient. Another good nursing (staff) tip is that it's always good to bribe them. Maybe a friend or family member can make cookies or something for them. Bribery and being nice are great ways to get the favor of the nurses which can only help your cause! The previous post about an IV team is great advise too, but hopefully the PICC line will be placed by a PICC line expert and that will be the only stick he needs.
I am looking over this post and laughing at myself about how I try to be so green and hippy not use plastic sippy cups and all, but then I get all western medicine and suggest a port. :giggle2: Well they say it's all about balance right? (or would that be contradiction?)
Anyway great luck with everything! I am sending fantastic vibes! :goodvibes:
TestifyToLove
04-19-2008, 11:53 AM
I'm a nurse by training and now only work *in* the home.
The doctor says he'll do IV meds at home in the future but wants it in the hospital this time. That said, we're scheduling Grandma for the second week because our intention is to argue for home IVs after all testing is done. We also intend to NOT utilize the playroom. This child does not wear masks well and just moved cross country a month ago. I don't intend to put him at risk for sick children's germs while we're there.
They will be doing a PICC line, that is the first procedure they will do. Which, is better than peripheral IVs but not as good as a port. Once upon a time, this child *had* a port...until a 28 day hospital stay resulted in them infecting him with staph sepsis and a septic fungal infection in the port, resulting in RAD and a transfer to the PICU.
We can't argue for a new port insertion for *this* hospital stay. But, we will be reinserting one in the future, since he will average IV antibiotics 2-3 times per year which will get more frequent as his condition deteriorates.
I'm not at all fond of a PICC by the way. That ensures that this particular child cannot be left out of sight of an adult for any period of time. Which means, if we need to step out for food, bathroom, etc, we have to have someone sit in the room physically while we are gone. But, they didn't offer a Port yet. And, I figured fighting for it so soon was premature still.
I'm not sure how to accomplish IV antibiotics on the PICC at home. But, we have a severe hemophiliac in the home, so we're accustomed to peripheral IV sticks ourselves. I think we can work it out. And, I suspect once the CF team gets comfortable with us and our skills, they will be more open to early discharge.
I need to write down that list of questions and considerations. Those are things I had NOT heard yet and had not yet considered. The only other one that was new to me was a friend mentioned that Children's hospitals don't provide a guest tray for parents. Had not made that connection, even though we've done a stay at a Children's hospital before.
normajean
04-19-2008, 12:03 PM
*hugs* I hope it goes smoothly
julucas
04-19-2008, 07:47 PM
IV antibiotics through the PICC is easy. If you are comfortable with piv's you will have NO trouble with the PICC. :thumbsup: I usually recommend to parents to cut the toes out of a sock (of course clean) and use that to cover the arm with the PICC. They usually don't need arm boards unless he CANNOT leave it alone. If you have babylegs, those will work and be cuter than a sock :giggle: . Maybe he will be able to leave it alone for a few minutes with it covered. I respect your intent to not let him play in the playroom. Although it will not be fun staying out, there are lots of germs, especially on the floor with the other CFers.
Just ask the doc about a port. No harm there if that's what you're after anyway. In my experience, they have higher success rates with ports. Especially if they are taken care of. It sounds like you have more than enough knowledge and experience to do the majority of his abx and home and take care of a port without problem. I am so happy he has found a mommy who can take care of his needs. :mrgreen:
I will type some of my teaching info. Hopefully the more knowledge you have, the more likely they are to let you do this at home. I have confidence! :thumbsup:
This is what I teach for home antibiotics. (Through a PICC or port or whatever.)
Order of infusion:
S-A-S-H
S aline
A ntibiotic
S aline
H eparin
Steps:
1. Always first: WASH YOUR HANDS.
2. Set up supplies as taught.
3. Wipe clave with alcohol.
4. Connect saline syringe.
5. Flush with ordered amount of saline (usually 3-5mls).
6. Remove saline syringe.
7. Connect antibiotic tubing.
8. Infuse antibiotics as ordered.
9. Remove antibiotic tubing.
10. Connect saline syringe.
11. Flush with ordered amount of saline (usually 3-5mls).
12. Remove saline syringe.
13. Connect heparin syringe.
14. Flush with ordered amount of heparin.
15. Remove heparin syringe.
*We use an all needleless system with little needleless access claves.
Best of luck with whatever they decide is best for your son!
Julie
TestifyToLove
04-19-2008, 11:22 PM
We've actually already got one with a port in the house. No worries there :thumbsup:
The reason for not getting the port yet is simply a matter of beaucracy. This little one is technically still a fosterchild and ward of the state until they give us the okay to finalize his adoption (state law requires we have custody for 6 months but his birthfather is contesting the termination of parental rights so I expect we'll get the go ahead to finalize as soon as the appeal is rejected). Until he's legally ours and not a ward of the state, we're required to get judge's consent on anything which requires sedation, anesthesia or surgery. We're authorized to consent to everything else but not those. So, getting a port would require a new court order, as the doctor only got court permission for the PICC this time.
Now, that baby leg idea...I love that one! His brother has the flame baby legs. I bet I could convince him to let us borrow them. And, I bet I could distract this fellow from pulling at a PICC if he's wearing really cool flames on his arms! I LOVE that idea. Thank you SO much.
(We access a port a minimum of twice a week and will do so until the hemophiliac can be taught to do it himself. While we're perfectly capable of peripheral accessing him, the pain associated with mom holding the needles contributed to his reactive attachment disorder. So, we fought for a port a year ago to help address his attachment issues and to help him relax enough about his treatment to attain some emotional healing from his trauma and past. Of course, I couldn't find the LM-X on Wednesday and refused to stick a needle in his chest without it, even though he wanted me to try. So, I went with a hand stick instead. LOL.)
julucas
04-26-2008, 09:20 AM
It sounds like you've got the port stuff more than covered! That bureaucracy stuff is so frustrating when all you want to do is what's best for your child.
Sorry for all the extra port info. :blush: I guess it never hurts to share education, right? :blush:
:hugs: to you and your babies.
TestifyToLove
04-26-2008, 05:09 PM
Don't sweat it. Oh! darn! Good thing I opened this thread, the child with a port needs infused and I forgot!
Beyond that, I got the last of the stuff for his activity bag today. Its not going to completely occupy him. But, he really shouldn't be in their play room if we can help it. Everytime he's been in the hospital previously, he's contracted a nosicomal infection (pardon my spelling I'm chasing 7 alone tonight, lol). We really do NOT want to allow them to take him in for a tune-up and have him get another infection while in there.
He goes in on Monday. They want him for 2 weeks. But, our childcare for the other 6 in the second week bailed on us. So, they get a week. At that point, either they've got to agree to finish the IV antibiotics at home, or they are going to have to put up with me camped out in the hospital room with 7 children. I intend to let Dh explain that one to them :D
sblakeley
04-26-2008, 09:10 PM
I'm a nurse by training and now only work *in* the home.
The doctor says he'll do IV meds at home in the future but wants it in the hospital this time. That said, we're scheduling Grandma for the second week because our intention is to argue for home IVs after all testing is done. We also intend to NOT utilize the playroom. This child does not wear masks well and just moved cross country a month ago. I don't intend to put him at risk for sick children's germs while we're there.
They will be doing a PICC line, that is the first procedure they will do. Which, is better than peripheral IVs but not as good as a port. Once upon a time, this child *had* a port...until a 28 day hospital stay resulted in them infecting him with staph sepsis and a septic fungal infection in the port, resulting in RAD and a transfer to the PICU.
We can't argue for a new port insertion for *this* hospital stay. But, we will be reinserting one in the future, since he will average IV antibiotics 2-3 times per year which will get more frequent as his condition deteriorates.
I'm not at all fond of a PICC by the way. That ensures that this particular child cannot be left out of sight of an adult for any period of time. Which means, if we need to step out for food, bathroom, etc, we have to have someone sit in the room physically while we are gone. But, they didn't offer a Port yet. And, I figured fighting for it so soon was premature still.
I'm not sure how to accomplish IV antibiotics on the PICC at home. But, we have a severe hemophiliac in the home, so we're accustomed to peripheral IV sticks ourselves. I think we can work it out. And, I suspect once the CF team gets comfortable with us and our skills, they will be more open to early discharge.
I need to write down that list of questions and considerations. Those are things I had NOT heard yet and had not yet considered. The only other one that was new to me was a friend mentioned that Children's hospitals don't provide a guest tray for parents. Had not made that connection, even though we've done a stay at a Children's hospital before.
This is a hard one Mama.... I personally have a love/hate relationship with my port. Love that I don't have to get my arms all stuck up anymore (I seriously like an addict before they did this). Hate the heperin that has to go in it all the time.
Just a PICC line ?? the reason they didn't offer this as an option was because the chemo made me immune suppressed and they were afraid of serious infection in the PICC line.
I mean you said he had a port infection problem so this now makes me wonder.....
Also I have a box of 60 masks if you would be in need of them!!
odentonmom
04-29-2008, 12:18 PM
I just wanted to say I hope all goes well for you and your LO. :hugs:
My youngest has had several surgeries and hospital stays in his 2 years. Most recently, he had surgery in February. We chose a specialist in Cincinnati, so it was just him and I away from home for 2 weeks which also presented some challenges.
I agree with the suggestion about Babylegs, they are great for the hospital. I am sorry that you will not be able to use the playroom, that was one of the biggest helps for myself and my son. But, still take advantage of all that Child Life Specialists and Guest Services has to offer. At the hospital we were at recently, they had an option for parents to buy meal cards for $5 and have the meal brought to the room. That was much cheaper than the cafeteria for lunch and dinner.
I also created and maintained a Care Page to pass the time and keep family and friends posted on how things were going. If the hospital offers it and you have a laptop, check it out. If you don't have a laptop, ask Guest Services if they have one you may borrow. CCH had some loaner ones available.
TestifyToLove
05-03-2008, 09:11 PM
He's home!!
They sprung him a week early. He's on 2 IV antibiotics still, one daily and one every 6 hours. His PICC is still in place. We have to go to clinic this week. And, the resident completely messed up his scripts, so I have to call the doctor's office first thing Monday to get that fixed.
But, the Baby Legs worked like a charm. Everyone in the hospital was complimenting Dh on the ingenious idea. I told him I couldn't take the credit. Right now, his antibiotics are in a ball. Hook it up to the PICC line, open the clasp and he's getting meds. Even better, I tuck the ball and tubing into the Baby Leg and he's completely untethered. So, he was running laps at a soccer field all day today *while* getting his meds.
