Felix's Mystery Respiratory Condition

hi katanya

things are certainly tough for little felix, yourself and dp right now, big hugs to you. i know only to well the hospital stays with the littlies. when my jessie was sick i was in the hospital with her for 2 wks (and we were in a single room as she had cancer and had to be isolated for fear of infection) it is a lonely and frustrating time. the nasal tube feeding isn't so bad, i know its another tube but if in the end that is what needs to be done then well what do we do. jessie had a nasal gastric tube put in about 2mths before she died, and i had to check each morning her gastric juices (to make sure tube did not dislodge) then feed her a special type of milk - called ensure to basically feed her (the tumour had spread to her facial muscles first and she could not chew) all her medication went down there two - in fact ds jay who was only 18mths at the time used to hold the tube up so i could put everything in it - bless him. sorry to go on but it really just has bought back lots of memories for me.

hopefully by the time you read this you and felix will be home again in your nice enviroment (hopefully with some answers) take it easy and look after yourself and your beautiful little boy. give him a big squeezy hug from me.

Katanya

It's good that you can comp feed Felix in the way that you wanted to. I hope the three of you get home and comfy real soon (and that the Centrlink probs sort themselves out!)

WE ARE HOME!!!!!

we have the oxygen man coming around soon to set us up for tonight, we got out this morning and stopped at the shops to buy an electric breastpump and some food before coming home, it was weird everyone was staring at Felix and a woman asked what was wrong with him. It's funny because he is actually heaps better now than before and now because of the oxygen prongs he looks sick! It is going to be hard because it's a lot eaiser to leave them on than take them off because the tape hurts him and getting the prongs in and out etc..

We finally sorted out the problems with the health care card, and are even eligable for a payment which was an unexpected bonus, I am just happy to get the card and get out of there, I was getting depressed!

Mooshie that is terrible about your DD, and I agree with what you say about the nasal gastric feeds, they are not THAT bad, BUT if he goes on them it will be hard to wean him off them IYKWIM, so if we can manage with supplimenting then I want to go this way, he looks SO different, the oxygen is meant to help him grow too so fingers crossed we keep going in that direction... Did your DD recover from her cancer okay? There was a little boy next to me last night with downs syndrome and cancer, it was heartbreaking and leveling...for me not to be worried about the short term, as what Felix has isn't life threating (as far as we know)

Anyhow I am going to have some lunch before the oxygen guy gets here..and then do some breast pumping! (TMI!)

=D> YAY I'm so glad you got home!!! I hope everything goes well now, its so much less stressful at home!

Sorry I didn't get back with you, we all of a sudden got really busy with Matilda getting a cold and tonsilitis and being up all night with cranky baby and DH...and Dr's, of course nothing like what you have had to go through, but I couldn't bring my infected contagious baby in to visit at the hospital. 8-[

Thats okay Christy I hope Matilda is feeling better too?

Our oxygen is all set up and Felix has eaten lunch with ENTHUSIASM and he looks SO much fatter already! So lets hope with the O2 and fortified EBM we'll be fattening him up really soon! ( the specialists are worried he'd end up in real trouble if he got a serious cold or flu because of his low weight)

Matilda's still sick, but at least has slept okay since last night...Keeping everything crossed that this continues!!

welcome home katanya and felix

glad to hear that he his looking and feeling better - here's hoping things will only improve from here on end. i know what you mean about the stares - we had a lot of people ask if jessie had cerebal palsy - she had a brain tumour unfortunately she died 4 1/2mths after diagnosis -she was diagnosed on 30th october 2001 and died on 3rd march 2002 peacefully at our home watching winnie the pooh whilst i nursed her in my arms. one day she was a perfectly happy and healthy 3 yr old the next thing bang - well i really won't go into the details it was horrible.

just glad to see that things are hopefully looking up for you guys. it's great to be home

i am just so glad

Katanya- so glad you guys are all home together, and hope things are better and the feeding goes well.

Cheers Michelle

Katanya and Felix welcome home! =D>

IKWYM about people giving you funny looks... Zeke has a zipper scar up the front of his chest from his heart surgery and always gets a few raised eyebrows and "oh the poor dear"s when we go to the pool, beach etc.

So glad the oxygen is helping.

Katanya I'm so glad that you and Felix are home. Good luck with the oxygen. And I hope you can stay away from the feeding tube.

The health care card comes in handy for sure. The amount of medication and drs appointments Alana has it would cost us a fortune if we didn't have it. If only it covered DB and me as well!LOL!

Anyway, you sound so much happier and positive in your post, so thats great. Take care.

Oh Katanya, I've been sooo worried, I didn't think to look in here, thank god the baby buddies redirected me!!!

I am happy you are home, you have had a tough time. Please make sure you take some time for yourself to regroup every so often. I REALLY mean it ok?? Get out of the house for an hour, have a bath, whatever. **taking off bossy boots hat now**.

Also glad you got c'link sorted out. There is a payment you can get related to the amount of extra care you need to give Felix (my darling boy)., I hope that is the one you are getting. If you have any other trouble I can try and intepret for you.

Kisses and hugs to you all

Glad to hear you're back home again! Fantastic news that the lung biopsy will be all the final test to endure and the supplimenting's working for you. Lucky he's too young to know that ppl are staring at him..

ITA with Lulu, you should take some 'you' time to take care of yourself and unwind after this whole ordeal..

Hopefully the 'unknown condition' will have a name and be treated soon and the waiting game will finally be over for you!! :crossfingers:

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i know what you mean about the stares - we had a lot of people ask if jessie had cerebal palsy - she had a brain tumour unfortunately she died 4 1/2mths after diagnosis -she was diagnosed on 30th october 2001 and died on 3rd march 2002 peacefully at our home watching winnie the pooh whilst i nursed her in my arms. one day she was a perfectly happy and healthy 3 yr old the next thing bang - well i really won't go into the details it was horrible.

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Oh mooshie that is SO quick and utterly devastating! :( it just reinforces my belief that you never know what life is going to throw you, I lay there some nights just praying to god and the universe that my little boy isn't ever taken from me before I die, I am not sure I could go on myself, I can't imagine how it must have been for you and your family. I hope that you have found the strength somehow, I guess you must have..

Thanks everyone for the welcome homes and yes Lulu we have found out additionally to Felix's health card we get a payment with isn't income tested (this was the big problem before) and since he has had it since birth we get back pay! So we will have some money for anything we may need for him.

The stares are getting to me, but the questions are even worse, somehow a baby with an oxegen prong makes him public speculation!! I have been out 3 times and everytime have been quizzed about what is going on, if I sound upbeat they look at me like I'm making light of something..but really it is only oxygen therapy, he isn't dependant on it! Like you said Mel he's too young to realise people are treating him diffrently, kids are the best because they just want to know why he has them on there and I tell them and they accpet it, not unwanted sympathy..

We are having a bit of trouble yesterday and today with the fortified EBM consumption, he gets really upset if I offer it and grabs at my top and cries..I end up feeding him if he gets like this because I don't want him to feel I am denying him..sigh..we'll get there!
It is really hard to get time to myself, I am also working this weekend, as we need the money with DP taking lots of time off to be with us in hospital.

Anyhow next week we're hoping to recoup!

Hi Katanya,

Just popped in to see how Felix is going. I can see by the posts that you've been just a bit busy!

It sounds like Felix is getting the help he needs. You must be so relieved.

Anyway, just a quick note. You are often in my thoughts as are all you other amazing ladies in this thread.

Love,

Mel

Hey there Katanya, its good to hear that you're home again :)

I'm so glad to hear that the oxygen is helping... and best of luck with the EBM feeds, I hopefully it wont take too long before Felix is a bit more used to them.

*phew* for getting Centrelink sorted out as well... they can be an unbelieve PITA at the most crucial times!

Take heaps of care of yourself sweetie, and hopefully next week you will all get that much needed time to yourselves...

Huge :hug:

Katanya: How are you going? I havent met you yet but have just read your post. You are such a wonderful mum and I am inspired by your determination.

How is Felix going?

Keep smiling

Hi Nola

We are doing just fine, things have become as normal as they can be for the time being, Felix has adjusted to his oxygen prongs and we are able to just leave the tape on when we go out so as to give him heaps of freedom. He has good day and bad with his eating, we saw the paedrictian on tuesday and we have a month to go to get his weight up (due to our new regime) and if not the nasal tube will be put in.

I got the letter for his lung biopsy and kind of freaked out and got so scared again about it, and wondered whether we were making the right decision, I wish I didn't have to make these decisions for him. We go back to hospital in just over a weeks time (18th April) he'll be in there for 4 days this time.

As for me, I have good days and bad, but I guess you just find the way to cope. I think being in the childrens hospital was good in way because I realise that we are not the ones with the biggest health problems. Day to day Felix is growing and developing SO fast (he's nearly walking) and I thank god that he is happy and laughes at the little stuff.

I think as a parent in this sitution you just try your best to do your best for them, that's all you can do, and hope you make the right decisions along the way, but apart from the additional needs it's really what every parent does everyday. I hate seeing him in pain, and I just hope it is all necessary and we'll come to the end of it really soon!

Katanya, My thoughts and Prayers will be with you and your partner/DH next week. As will all our prayers for Little Felix.

I know exactly what you mean in relation to what we do with our special needs children. It is only natural for a mother to love her child unconditionally, and I believe that God would not have given us the children we have unless we were able to cope. Yes we to have our up and down days, but believe me I would not chance any of it for anything in this world.

blessings to you all