Felix's Mystery Respiratory Condition

Thanks for your thoughts guys, he is feeling MUCH better today, and is starting to eat again..unfortunately I think he's lost lots of weight again :(

Lara, no they didn't put him on antibiotics as it is viral, there is no point. Just had to ride it out, and remove the mucus :(

I had a really bad day yesterday, I started crying and feeling really down, hating our house (it's a big mess) feeling isolated, and unhappy about everything..but having a much better day today, decided to take Felix to the shops as he was much better (he loved the stimulation) and bought him some new warm shoes. I feel much better today and came home with ideas about what to do with our house to make it easier to live in.

Thanks for asking, it gets a bit depressing sometimes with this rollercoaster of illness and hospital, but I just keep thinking that soon we'll have some more ideas about what is going on for definate.

I find sometimes it can be really hard to let people know that I'm having a bad day or not coping as well as I would like. And when Alana is dealing with such a serious condition, sometimes I feel guilty for not coping or having a bad day.

I definitely find that I cope better if everything is organised, especially around the house. There is nothing worse when you are trying to cope with hospital visits etc etc and then have to come home to a mess. I hate it when people say to me ask for help or don't worry about the mess. That doesn't work for me. I need to be able to do it myself and I can't stand mess!!!I'm stubborn and probably a little anul when it comes to the house!LOL!

I think I have said this before, once you know what your dealing with it will be a relief. You can just get on with it. Its the waiting and not knowing that drives you nuts.

Its always easier for other people to tell us not to worry about mess and disorganisation isn't it?? They don't have to sit in it all day long and just look around at things that need to be done! and ikwym about having to do it yourself...there are somethings that I have to do myself around the house...

When Matilda had really bad reflux days and all I did all day long is laundry and clean up vomit, yet there are dishes piled up in the sink & the floor was disgusting and there was stuff everywhere due to rennovating our "junk" room... all I could do was go for a walk to get away from looking at all I had to do. Katanya that trip out of the house sounded just like what I used to do, just get away. Luckily we have a park a 5 minute walk away and I would put Matilda in the sling and walk and swing....

Oh Katanya, so sorry to hear about Felix being unwell. I will be thinking of you both and hope that he is on top of things before the next trip to hospital. Sending heaps of positive vibes!

I know what you girls mean about the house mess, I have no excuse though, lol. Expecting visitors usually motivates me to get things done, but it's hard to keep up with things at really busy times. I just keep telling myself, keep up with the washing & kitchen & bills & nothing bad will happen. It does really get me down sometimes though. On the rare occasions the whole house is clean I feel so good, but then I can be kind of *****y about keeping it that way til I've given up again, lol.

Anyway, I say again Katanya, you're doing great!

Just wanted to say Felix is happy and Healthy again! And I am feeling GREAT..never had my happiness linked to another person (don't belive in that sort of thing) but my small son has magical powers..when he is happy he makes the whole world seem a brighter place :D

He had his fluvac (half dose) and new teeth have come through..he's such a great teether, just dribbles and bites everything in site, not even grizzly..I'm lucky there!

House is looking cleaner, we rearranged stuff around, and DP attacked the garden. So that makes everything seem better too!

Thanks everyone for the comments, I am finding I am feeling heaps better ATM, I have caught back on sleep, DP and I actually had some together time, and Felix is doing great..

Not sure when the biopsy will be, I should really ring the hospital and find out but I'm kind of enjoying this inbetween time...I don't want us to go back into hospital again :(

Thats fantastic news Katanya. I'm so happy that Felix is better.

I'm so happy that things are better for you now and you're feeling so much more on top of things :)

So glad to hear that Katanya! Wonderful for you to all be together and well.

Best wishes Michelle

Just wanted to put in an update..

Felix is going in to have a Nasal Gastric Tube tomorrow..we have been trying to aovoid it for ages, now that we are going to have it, seems almost a relief..only takes 30 seconds not even a general, just staying in overnight to get the feeds established..

He has not gained weight since being ill, lost it actually still, and no sign of catching up, the paed suggests we put it in to help him gain weight before the biopsy so he has less chance of things going wrong, and if he does get an infection or some complication he'll need some extra weight to help him...

So decided that it will be the best thing, and hopefully this will see himstack on the kilos finally..

So while it wont be pleasent for him, it will be better in the long term..

awww huge hugs katanya I know its something that has been hanging over your heads for a while. I hope it goes ten times better than expected & he gains weight quickly!

Sounds like this is a good idea. Like your Dr said the more weight babies like ours carry the easier it is to help fight infection. Though I am sorry that he has had to get it. Poor mite.

Anyway good luck with it tomorrow.

Hi Katanya

Will be thinking of you all tomorrow. Can I make a suggestion? Take some interesting toys to the hospital that occupy Felix's hands so he doesn't fiddle with the NGT and tape they attach it with.

Anything that keeps little fingers busy will do :D Hope it goes well, and he puddin's up real quick.

Hope it all goes smoothly Katanya and that Felix beefs up quickly, the chunkier the better!

Thinking of you guys
Michelle

Hugs Katanya. Hope Felix copes with it well and that it does the trick.

Thanks everyone, everything went well this time and only a 24 hour stay in hospital YAY!!
We had a trial overnight there and everything was tolerated well..he even gained 100 grams in the 2 days since weight in!!! It was exciting

The NGT being put in was quite tramatic for Felix, I don't think it hurt him, but the nurse had trouble taping it and he had stay laying down longer than expected..

Then we had everything ready to go last night only to discover that the hospital supply had left out a vital part of the pump kit !! So we weren't able to do last nights pump :( I am going to ring them this morning ..

So fingers crossed all goes well tonight..

Woo hoo a weight gain already!

It is traumatic for the littlies when the NGTs are put in, isn't it (and for the parents, too!)

Hope you get another good result next weigh in.

Kantanya fantastic news on the weight gain! When is his next weigh in?

That is GREAT news that Felix has had a weight gain already! \:D/

Bummer that they left out the pump part that you needed, I hope you can get it all sorted today then, and goodluck for tonight! :crossfingers:

Thats great news on the weight gain!! I hope he settles nicely with the NGT and gains heaps more!! :D

thanks for your well wishes everyone, after a few teething problems the feeds are going well, he has accidentally pulled the tube once and had to go back and get it put in, but good news it seems to be working as he looks like a fat gut is forming! and he feel HEAPS heavier..

I HATE the tube though, he cries everynight having the oxygen out in on top of it and trying to change dressings is a nightmare, his first birthday is coming up and the ugly tube will be in all the photos..anyhow, I hate the tube but like what it acheiving, he also is eating better through the day..

Our next appointment is the end of next week 20th! I am so excited to see how much he's gained..it will be exciting to get a positive rather than being anxious about his placement in the scheme of things..

Katanya- so good to hear good news, and I can't imagine how hard it is for darling Felix to sleep etc with all the tubes etc. He is doing so well and so are you guys. What a shame about the tubes and his birthday but you're right the main thing is him chubbing up and sounds like it's working.

Best wishes Michelle

Woo Hoo Katanya... that's great news. And try not to worry about the NGT in his birthday pics... it's all part of his history and when he lookes back at these pics later in life you will be able to explain why he's such a special boy and how precious he is to you both.

Thanks for the update Katanya, I can't wait to see how he's gained too, lol. Who cares about the tubes in the photos, it's part of his experience. You're doing great!

Very best wishes,

Katanya,

Felix is looking great - such a beautiful child. Hope the check up goes well and he has put on some weight!

Love,

Mel

thanks guys, you are right in a years time the photos with the tube will only remind me how lucky we are (hopefully not there then!!)

Speaking of tube photos here are some from his first birthday celebration with my mothers group:

http://share.shutterfly.com/osi.jsp?i=EeANmzVqzaMmzErA

We went to Abrikidazzle, his real birthday party is on saturday but just for close friends and family..

He is so cute!! I love how he is such a smiley boy, he looks really happy :)

Katanya Felix looks great. Like Christy said he is so smiley. I guess the main thing is that he is still smiling and is happy.

Happy 1st Birthday Little Man!

Well Felix turns 1 at 12.04 midnight !!

We had our family party today with his friend who we met in hospital, her mother and I have become really good friends..her name is Emmalee.

Felix decided to pull his tube out 1 hour before the party in his afternoon nap :( ..so no tube for the photos \:D/ but we have to go and get it put in in the morning :( I decided to leave the hospital visit for the morning and give him a night off

Here are the pictures!!

http://share.shutterfly.com/osi.jsp?i=EeANmzVqzaMmzEyg

Hey Kat.. he looks like a normal, happy and healthy one year old, congrats.. when he gets older you can tell him that he pulled his tube out for his photos.. :)

HAPPY BIRTHDAY TO FELIX!!!

LOL How Cute!!! YAY!!!

Happy Birthday Felix!!!!

HAPPY 1st BIRTHDAY FELIX!!! :happybday:

The piccies are gorgeous Katanya... he is looking really healthy too, and looks like he is getting chubbier cheeks :D
Its so wonderful to see how much he has grown up over the past year!

Lookin' good birthday boy. Happy birthday Felix!

Happy 1st Birthday, Felix!! :D

Happy Birthday Felix. Hope it's a good one! (and good work on the cheeky tube-removal for the birthday party shots!)

Does that look like a double chin forming?!LOL! Great pics. Happy Birthday again!

Yay! happy bday Felix.

Katanya Felix obviously didn't want the tube in his pics either. LOL

Best wsihes michelle

Yep that is a double chin LOL takes after DP ;)

when we had the tube reinserted we had a weight in..guess what??? 8.7 kgs!!!!!! he's back on the charts!!! 500 gram gain in 10 days!! hows that??

He had a wonderful birthday, even with our trip to the hospital!

A very respectable weight gain indeed, woo hoo!

What an excellent weight gain Katanya, I bet you feel great hearing that number.

He looks wonderfull too.

Best wishes Michelle