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Shannon - good on you for taking a stand! Poor little Jessalyn being poked and prodded. It's good to hear she is back to BFing and YAY @ her wonderful poos! I hope she continues to go well and you can take her home soon. You are doing a fantastic job!!
Shannon, your strength is such an inspiration and you, your Dh and all 3 of your little girls have been in my prayers for a while now.
I was talking to my grandma about you and litle Jessalyn after reading the post on you milk running out and I have been instructed that I must post you her recipie for getting the milk back. She's 85 and had 9 kids not to count all the grans and great grandkids and what she says is law so here is her recipie. From your next post it seems you may not need it but just in case...
1 cup Activite
1 cup Skim milk powder
1 litre of milk (which ever type you like but apparently she thinks full cream is better)
Mix all 2 ingredients together in a blender or with a bar mix (one of those blenders on a stick where her words). Have a large glass in the morning and then drink the balance through the day. Apparently after 3 days you have so much milk you wish you hadn't bothered.
Again all my wishes and prayers for a speedy and positive recovery to your amazing little girl. I hope you are both home soon.
Lynne, thanks so much for having reaching out to Shannon and sharing your experiences with her.
Shannon that is so amazing about her poos!!!! wow the joy you must have felt seeing a yellow poo!! Yay for breatsfeeding and things getting better. I am sure within days she'll be more enthusiastic!
You are so brave and amazing for standing up to the medical staff like that, well done, I'll bet Jessalyn apperciated it!! There is nothing worse than them trying to get something and not being able to, and then making a pin cushion (i've had the expereince myself)
So glad you have found a support group, as I have said to you before there have been time for me that I neede that undersatnding so badly, and now you will have plenty of expereinced people to share expereinces with and ask questions..and see all the wonderful sucess stories to keep you going !!
I have my fingers crossed you are out tomorrow!
Hi Shannon,
Great news, but Oh boy, can we relate to your nightmare about the docs trying to replace that IV line. And why do those extra stressful things tend to happen in the middle of the night? I felt teary at the memories it brought back. It's great that there was a good alternative (codeine) available? And isn't it great not to have any IV lines to get tangled in?!
You're being so controlled over your response to Jessalyn's yellow poo, and yep, there's probably good reason to hang back a bit before punching the air about it. . . BUT I still reckon it's VERY exciting! Is the surgical team saying they're pleased about it?
Good on you - so many hoops jumped through already. Here's hoping for a speedy return to your own bed at home.
Regards,
Lynne
Shannon I know how it is analysing poo. We were doing that with Alana for ages (as her lack of digestion showed in her poo-greasy and smelly).
Its great things are going well. I hope you and Jessalyn get out in the next couple of days.
What great news about Jessalyn's poos. And it great that you have gotten her back on the breast & feeding. Here's wishing you every continued success with her recovery & that you have her home soon.
=D> for poo! To an untrained novice like me that sounds like a really good outcome!
Shannon that is so fantastic the Jess is BF again, what a little champ!!
My fingers are crossed for you that her poos will stay that colour as well!
Good on you for taking a stand against the doctors as well. I cant even imagine how stressful and traumatic a stiuation like that would be for both you and little Jessalyn. Sounds like she is much better off without all of those IV lines anyway.
Still thinking of you both, and [-o< that you are able to go home very soon...
:hug:
Shannon that is wonderful news that Jessalyn is breastfeeding again. What an awful situation you were in, I would have been a mess I`m so glad you took a stand good on you. I hope you`ll both be home very soon.
Take Care
Deeanne
ooh Shannon, glad you have such a good attitude about going home tomorrow, I used to get so let down having to stay in an extra day..don't you hate waiting for the doctors? my most unfavourite part because towards the end Felix just wanted to play or I'd want to take him for a walk outside and we'd have to wait around for them..well I guess they are busy important people!
LOL at the poo inspectors, at least you are seeing good ones now..!!
I know what you mean about the semi normal life, we have still got drs visits every week or 2 weeks (with all our specialists) and Felix is doing so well still..but just without that horrible thoughts of operations and "what ifs?" ahead of you, and you have your diagnosis now, you can look ahead with a more positive future that one day it may all be a distant memory like Lynne's daughter
Here's to a normal life! :smt038
yay on Jessalyn breastfeeding again, what a trooper she is. Great to hear that you are going home tomorrow, I have missed you around the place!
LOL at the poo talk! It did seem and still does at times seem as though Alana's poo is talked about alot!
Funny though her pead hates talking about poo. One time we were describing the color and he was horrified.LOL! He's like, 'I don't wanna know!!!!!' We were laughing about it with the Cf nurse and we were saying, how can you be a CF paed and not talk about poo!LOL!
Good to hear that you will be out today. I'm sure things will look even better once at home.
Yay Shannon! Hopefully today is coming home day as planned, can't wait to hear you had a good nights sleep in your own bed. Love to you all
Michelle
Hoping that you have gotten your little girl home today as planned Shannon. Big hugs your way.
Shannon I hope they have allowed you to bring Jessalyn home today. Hugs to you both.
wow Shannon fantastic news that you are both home and doing so well \:D/ how good does your own bed feel??
Sounds like things are progressing very nicely, lol about avocado poo..well if it's what the dr ordered ;) I hope so much that the Kasai is a sucess!! [-o<
Wow @ all the meds..Felix is on antibiotic now and screams every time he takes them, I hate it, but will try to think of Jessalyn when I'm giving it as this does will be over soon..
The bloating sounds abit scary, glad it's all gone..she really is amazing, I don't want to be trite, but sometimes when I think about all she has endured I believe that she can handle anything in her life, I know that Felix is now a very resiliant little boy, no knocks keep him down because he's been through so much big pain..hope the same s the case for little Jess!!
Relax now Shannon..you've done well!!
Love to you both!
Shannon what a great way to start the morning.... reading that post of yours which was so full of joy!
I remember Zeke was really bloated after his ops too. It really changed the way he looked a lot.
LOL at the avocado... hope you can get passed the analogy and still enjoy them :D
Shannon I'm so happy for you that you are home and Jessalyn is going well.
Sending loads of love to you and your family.
What wonderful news Shannon. So glad to hear you are home and your precious lil girl is doing soooo well....no doubt shes picking up all the well wishes coming from everyone across the country!!!
Jo
Yay Shannon! I am so glad that you and little Jess are now home! :)
Go the guacamole poos!!! ;)
Shannon,
So glad to hear that you guys are home. The girls must be thrilled! Here's hoping Jess continues to make a great recovery.
Time for you all to enjoy being together again.
Love,
Mel
Shannon,
I am so happy you and Jess are home and are doing well.....Please know that you are still in my thoughts and will continue to be. Jess is obviously a trooper but I think all of us on Belly Belly know where she gets that strength from and thats her beautiful mum!! Keep your chin up Shannon and know we are all here for you and your family!
Jess
Glad to hear that you are home.
I can understand the med thing. It seems as though it never ends, but you do get use to it.
It sounds as though things are really going well. Jessalyn is a trooper, but I think her mummy is aswell. Big hugs to you both.
Oh Shannon words can't describe how glad I am to hear you are home and things are going well, I am going to look at avocado's too as a good thing LOL. Everytime I go in the supermarket I'll think of Jess's poo's!PMSL.
We are all praying that the op was a success! I imagine you snuggled up in bed and it is such a nice picture. Great job on getting through this very tough first stage, keep your chin up.
Best wishes michelle
ow Shannon its great to hear the news :)
Great to hear the news.
What happens from here? When do you find out whether it was a success?
So wonderful to hear that you have gotten your little princess home. Here's hoping that things just continue to get better & better for you guys.
Hi Shannon- just popped in to see how things are after your weekend home, hope the poos are still the same and that the kids have settled back into having you all home together.
Best wishes Michelle
Shannon i can really feel the pain and frustration in your post, and I can totally understand those "what if..." feelings.
You do need to let it out or the pressure will build up inside until you explode.
Please know that I care about what is happening in your life at the moment, and I pray for you guys regularly, that you will have peace and hope and strength.
But please don't think your emotions aren't valid. It's natural to ask the questions that you're asking, and experience the feelings you're feeling (even though that's no consolation).
Hope your adorable little princess gives you a smile from the heart today. She may not be able to express it yet, but she loves you and she cherishes the support and selfless love you give her.
Shannon, I'm so sorry to hear that Jessalyn's health issues aren't resolving as positively as they might have. Not being a mother yet, I can only imagine how worried you must be, and sad for Jessalyn not having the best possible start in life. I am just hoping and hoping that you'll get some really bright news soon, to offset the worry and bad news. *huge hug* for you, Jessalyn and family.
xxx
Shannon there is nothing wrong with you feeling the way you do today, infact its all part of the journey. You need to deal with the bad stuff to or it will build up and explode at some later date. Everyone here is behind you 100% and when you need to dump on us please do. Maybe the support group through the hospital would be able to help.
Its impossible to always be positive and strong and not always healthy either. Sometimes even just a good cry helps relieve the tension that builds up. Remember you have had a very stressful time over the past few months. It does not make you any less of a person to have a bad day (or even bad few days).
Regarding a Liver transplant, its one of the better organs to need a transplant for as you can have a living donor as the liver can re-generate from just a section. You will be surprise how many family and friends would be prepared to be tested and donate should the need ever arise. When it looked like I would need a kidney transplant and the whole issue hadn't even been openly discussed I had cousins, friends and even work colleges offering to be tested for compatability. Yes waiting list in Australia are horrendous but there are also many people who would offer should the need arrise.
Remember Shannon, you are an incredible woman and amazing mother. All you can do is the best that is within your abilities and you certainly do that. You, all your girls and family are in my thoughts and prayers, and I'm just one of the many (very many) BellyBelly people who are sending all our positive thoughts your way.
Oh Shannon :hugs: it is SO natural to have days like this..it's funny I always though with Felix that having a diagnosis would end the confusion and uncertainty, but when I read your post, it can also be the beginning.
Sometimes being told your child has "this" can mean you look ahead too far, to all the posibilities and journies that other children have made. It takes you from thinking in the moment and her and now to thinking..one day she may have a liver failure and need a transplant, not to mention the other things she has to deal with.
I remember a mother talking to me when i worked looking after group of children for vacation care, and her son was 6 and she looked at the older children, and asked me..is that what my son will be like when he is 12? I could only say to her that the common link they had was autism, but who they became as a person and how that affected them, was complete unknown. Jessalyn may share things with other Biliary Atresia kids but her journey is her own..
I can only say that I have had times where I thought like you, wondering what would happen if Felix did have an auto immunity disorder (not completely ruled out) what would I do if his systems kept shutting down..god it was torture..I think no having a diagnosis forced me to live in the present, because we have no idea really how bad his future could be or not be..
You are a wonderful mother, you are doing everything a loving mother would do, grieving for what your adored child may not have in her life, you do not have to be strong every day.. I actually never liked when people called me strong or said I was coping well, because it made me feel like a fraud because I certainly didn't feel like I was coping well..I felt like my insides were being pulled out and knotted everyday..but I do have mostly good days again now
Just trust that Jessalyn has the tools she nees to get through this the best way she can, a loving mother, a loving family, and knowledgable doctors..I just know Jessalyn is going to be a wonderful child no matter what her needs may be.
I hope you find some support through the people at the hospital, I know it is something I would feel I need..
Shannon, it's very grounding for me to read a real message, rather than a "Pollyanna" style message that glosses over what you're really feeling.
There's a lot I could respond to, and I know that Jessalyn has some other health hurdles to jump apart from the liver one. Maybe I can just focus on the liver angle?
This will be disjointed, but I have a few points to mention after reading your post and the lovely ones that followed.
First, regarding what you've said about biliary atresia being chronic, incurable, and life-shortening. I know that those words are hair-raisingly frightening, and I went over them time and time again in the early days of Rose's experience. I used to also find myself repeating the words "biliary atresia" over and over again in my head at night, so that I felt I'd go crazy.
Can I say though, that I have to disagree with the second two words as accurate descriptions of this disease? I say this, because of transplantation as a treatment option - it's not pie in the sky: it's very real. They did the first paediatric liver transplant in Australia in about 1988, I think. Before that, unless the families could fly overseas for a transplant, then maybe "incurable and life shortening" were words applicable to children whose Kasai had failed. But today, a successful transplant means that the child no longer has biliary atresia, and there's no evidence that a child with a successful transplant will have a shorter life. (Obviously, transplant hasn't been around long enough for us to know what the life expectancy is. As one of the gastro doctors at the RCH said recently at a seminar, there's nobody around who had a liver transplant 80 years ago, so we dont know!
Second, regarding the liver transplant waiting list: rest assured that if there's a very sick child on the list, they go straight to the top, across Australia and New Zealand. There are different levels on the waiting list, and I can't remember exactly what the categories are.
But Rose was on the waiting list for just 3 weeks, and she almost received a liver on day 21 (there was a problem at the last minute, so the transplant didn't go ahead that time). A few days later her priority was upgraded. This meant that she was (possibly, I'm not sure) number 1 on all the lists across all Australian states and New Zealand. She received a liver transplant the very next day, exactly 4 weeks after first being placed on the list.
Re the "living-related donor" option, we went part of the way down that road while Rose was on the list, in her last week of waiting. Shane was ruled out because of some arthritis medication he'd been on for a long time, so I began to be "worked up" as a possible donor. It was a bit iffy, since I'm no spring chicken, and had also been rather too fond of white wine over a number of years. Still, the doctors agreed to begin looking at me as a very last resort - Winita actually said that the doctors are a superstitious lot, and any time in the past that they had had a parent start to be looked at as a donor, a liver donor had come along.
We were told that in Australia, while they have done living-related transplants in the past, transplant teams do prefer not to go the living related donor way these days, mainly because of the risk to donors. The transplant teams meet every year to discuss their policy on living-related donation, and so far, the consensus is that there are far more advantages in using donated liver tissue from deceased persons.
In my case, they vigorously tried to discourage me from being a donor, because I'm already a mother to older kids. They mentioned the risk of me not surviving the operation, or of ending up with a liver disorder myself as a result of damage during the operation. Evidently some living-related donors have gone on to require a liver transplant. All this stuff we were told was a bit discouraging, but they said to us "Don't worry, we reckon a liver will turn up."
And it did! That's how the priority system works - really, the transplant team have faith in the system for good reason. Kids on the list get blue-ribbon treatment, for example, they'll be offered the livers from the youngest possible donors, receive the best "plumbing" (arteries, veins, ducts, etc.) I'm not saying that we don't need a much higher organ donation rate in Australia - of course we do. Then those who are not so seriously ill could also have access to transplants earlier, and get on with a normal life.
You're such a long way from that, and every colourful poo is a sign that her digestive system has what it needs to process the food, and for Jessalyn to grow.
OK, we're packing to go up to NSW for a few weeks, so I need to wind this up for the moment. I'll have internet access though when I'm away, so please, hit me with any questions!
BUT one practical idea I have right now is that I have a video of the head of the Victorian Liver Transplant Unit, Bob Jones, talking in April to our support group, all about paediatric liver transplantation. The video shows him giving a talk, then fielding questions from parents in the group. Also in the seminar were the RCH paediatric liver specialists Arnold Smith, and our own Winita was there for a little while. It's quite a long video, going for almost 2 hours, but my goodness, it's so positive! I'd be so happy to post it to you if you'd be interested in having a lend of it. I bought it last week when I was in at liver clinic (they charge $10 for a copy, just to cover costs). Maybe you could one day order your own copy, but in the meantime, I reckon it could be just the ticket for you to listen to Bob talking about outcomes for these kids. He was the one who did Rose's transplant, and we got to know him very well in the months leading up to her transplant. He is simply a beautiful and wise and talented man. I'd love for you to see what I mean, so please, send me a quickie reply if you'd like me to bung the video in a postbag.
I'm leaving tomorrow, but I'll bring the video with me on our trip, and I'll keep a check on whether you've left me an address to send it to, and post it. (Just email me your postal address. My email is lynnecoleman@optusnet.com.au) Maybe you can then just bring it back in to liver clinic one day - no rush though.
Hope to hear you say "yes" - and I hope you get to meet Bob one day so you can feel some of his positiveness about biliary atresia. But today, you're SUCH a long way off all that! Jessalyn's pooing in colour after all! Rose never did - they're very different kettles of fish.
I'm not saying "buck up", by the way - these teary days are very important - I cried rivers and rivers, and I cried again when I read your words describing your love for Jessalyn. Yes, that's exactly right: we love them SO MUCH! Let's wallow in this love - there's nothing on earth like it, and the intensity, while it hurts sometimes, is something non-parents miss out on terribly. You're doing your job brilliantly - love and cuddle that gorgeous little girl.
Much support,
Lynne (PS Shane is also very concerned about you all. He keeps popping in and saying "have you mentioned this. . .?!" etc.)
Hi Shannon. Just reading through & seeing where you're at. Hope the positive signs continue, & I'm so pleased to see you getting such great support. Pleased to see you allowing yourself to feel everything you need to feel too. Thinking of you!
Hi Shannon:
I'm having trouble trying to figure out the way they report the bilirubin levels, on some US sites they talk in figures really low like 1.2 and such, but hers was 128 when she left the hospital (up from 120 after the op), I assume it is a different measure, I've really got to find out.
Lindsay here........Yvette's bloke :)
Just to give you a bit of an idea about normal serum bilirubin levels and how they are reported :
The units here in Australia are usually in milligrams per decilitre (mg/dl).......so a figure of 12.8 would be 12.8mg/dl.
This is milligrams of bilirubin per 100mls of blood.
You may also see it, as you mentioned, written as 1.2.......when it would be 1.2Grams per Litre......which is exactly the same as 12 milligrams per decilitre, but just a different way of listing/reporting it.
The amount/level is exactly the same, but, of course, it wouldn't be right for them to not try and confuse us all the time!!
The levels you mentioned for Jessalyn are actually pretty good, under the circumstances.
To give you some idea, an infant is said to have hyperbilirubinaemia (too much circulating bilirubin being on-board) with levels of greater than 15 (>15)mg/dl, in a full-term infant.
With prematurity, the levels are >10mg/dl.
At 12.8mg/dl, things are looking pretty good and it's likely that those levels will be improved upon with time. In fact, under the circumstances, those levels are outstandingly good.
You are all more than overdue a little more good news and Yvette and I both remain full of admiration for you all at the incredible way in which you're all handling things. I wish you all strength and resolve to come through the other side.......always know that there are many people who are with you. You don't have to do it all on your own.......I just wish there were so much more that we could do in a direct sense.
I hope this info helps a bit and please, don't hesitate to let me know if theres anything at all I/we can help you with.
take care and look after yourselves well
all our love and warm thoughts
Lindsay, Yvette and family.
Okies........
That strange 'y'-like symbol means 'micro'..........micromoles per litre in this case. The symbol looks like a 'y' but with the 'stick' part hanging-down on the opposite(first) side. I think that's what you are recalling, Shannon.
Many levels within Australia are additionally listed in mmol/L (which is millimoles per litre), as distinct from micromoles ........it gets incredibly confusing and to try and explain just what a mole is would not be easy. It essentially is concerned with molar/molecular weight and concentration per known amount of a substance........blood, in this case. One might well run away with the idea that they don't want us to understand it too well!
There are 1000 micromoles in a millimole.......so if the reading of 128 is in micromoles it would read as 1000 times smaller if written in millimoles, that is 0.128mmoles/Litre.
The danger lies in bombarding you with way too much information.......something I certainly don't want to do. I realise that all you need to know is what's normal and what isn't and what indicates a good or bad response.............what a shift in these levels actually means, over time.
The 20 that you mention is, I believe, referring to the detected bilirubin level at blood test being greater than 20% of the total bilirubin, this being significant to indicate possible billiary atresia.......this is, of course, at the diagnostic stage and I'm not sure if it has any real use subsequent to diagnosis in the monitoring of levels. I feel that they will use other parameters and I need to find out what they are here in Australia.
I'm sorry that I can't get any precise info right now, but I will find out and in language that can be easily understood. I have a good relationship with my GP and I'll be picking his brains regarding exactly what units are being measured and just what a level of 128 really does indicate.
I certainly don't want to give you erroneous information..........bear with me :)
take care
Lindsay
Shannon there is not alot more than what has already been said. But it is a difficult time and also early stages. You just have to give yourself permission to be upset. At the moment everything is 'new' and there is so much focus on the BA. But as time goes on and things become more normal, it does seem better and those days of crying get less and less.
There is some positive things Lynne has mentioned. Hang onto those types of stories Shannon. They are the ones that keep your head from going crazy. And there is no reason why Jessalyn shouldn't become one of those stories aswell.
I personally only listen to happy, positive stories. Maybe I am kidding myself, but I refuse to spend day after day wondering if Alana will make it to her 30th birthday.
You are doing so well Shannon. Your doing exactly what every great Mummy should be doing. Big Hugs!
:hugs: Shannon.... I can only imagine what you must go through on a day to day basis. You are doing a wonderful job!
Have had a bit of a chat with my Doctor re: the bilirubin mystery. It is measured in umol, as you seemed to recall, and has an upper limit of 20, also as you stated...........thus 0 - 20 is the 'normal' range. This doesn't mean that since Jessalyn's levels were 128 that they are extremely high.........merely that they are elevated above normal levels, normal for those of us without any interruptions to our Liver/Billiary system.
I would say that it's of much geater significance to measure the levels from the baseline of what her level is and, of how this level may fluctuate and (hopefully) improve, not worsen significantly.
Another thing to consider, is that often with these tests, the figures can appear astronomically high.........many of the enzymes that are measured with Liver Function Tests often return in their thousands without being of massive significance.
I don't want to go on at great length, especially when it's possibly telling you guys things you're already principally aware of, but I do feel it's important that you jot all of these little queries down and present them, one by one, to your specialist/gastroenterologist. It's very important that you are both fully conversant with the terminology........something which, I'm certain, you're both becoming very adept at!!........but that you understand about these baseline test measurements and exactly what the significance of a shift in the numbers within these tests means.
I guess what I'm trying to say.........and not very well...........is that large numbers aren't always scary in reality. Doctors are quite often far more reluctant than I at releasing medical information that might scare people to bits : depending upon your own doctor specialist, you may have to 'prod' him/her just a little to coax them out.
Enough of all that already. I hope my long-winded approach hasn't totally discouraged you from ever asking for any future advice and want to repeat that I will always be happy to help in this small way, should you ever need me to.
Thinking of you all
Lindsay, Yvette & Family.
Can't do much more than send hugs your way Shannon & say that I think it is great that you are getting so much support & information from people who know what they are talking about or whom have been in your situation.
Hope that all with Jessalyn is still improving & that every day it just gets a little better.