Respiratory Issues?

[jandksmommy]

Anyone else out there dealing with chronic lung disease/BPD? My daughter was born way too early and has had and recovered from many issues but at 17 months old, she is still dependent on oxygen support. I was wondering if anyone else here was dealing with this as well. I would love to chat.

 

[DonnaBallona]

hi!

I'm sure we've spoken before about similar issues, but here we are again!

Jude has chronic lung disease and lung damage due to his premature birth, and was oxygen dependent until about a year ago. He came off and has been going steadily downhill since. I have a very, very sick little boy

Jude is currently battling his 3rd collapsed lung in 11 months. they don't know why it's happening, other than he constantly makes a gurgling sound after feeding which makes us wonder if his lungs are still filling up with liquid, even though he's tube fed and nil by mouth.

we are waiting on a bed at a hospital in London to get him more investigations, going back on oxygen is a very real threat for us at the moment.

How are you doing with the oxygen? does your little girl move?
I have trouble with Jude getting tabgled up in his wires when he's being fed too!

x

 

[jandksmommy]

Oh my goodness... YES! She is constantly getting tangled in her oxygen tubing... getting it wrapped around herself and everything else in her path! I'm terrified of her wrapping it around her neck when she rolls around at night .

I sure hope they can get Jude a bed. The waiting is awful. Is he on diuretics to help keep the fluid off his lungs? We have been discussing this as an option for Reese if she doesn't improve with the warmer weather and higher humidity of spring. I have been holding off on it as she would need weekly blood tests to check electrolytes if we go this route.

 

[DonnaBallona]

we are actually in the same boat with dueretics, but I'm holding off purely because I want to know where the liquid is coming from first. they are going to do a procedure called a 'Nissens' (I think that's how it's spelt!) where they sew up the top of his stomach to stop the liquid running up his osophegus and overflowing into his lungs. If that doesn't cure it then I want the duretics for him. Jude does get puffy a lot and they would really help with that.

re the tangled tubes, aaaarrrrrrghhhhhh they are a nightmare! Jude's overnight machine feed panics me too, I'm terrified he'll turn over and yank his mic-key button out of his stomach

Will your LO go to nursery at some point in the future? we are a year away from starting nursery and I'm already feeling anxious about it! I often wonder how he'll cope with tubes and other curious kids! x

 

[jandksmommy]

She already goes to nursery 2/3 days a week as I went back to work when she turned a year old. The other babies there were very curious about the O2 and the tubes and the staff was very nervous but it didn't take long for everyone to get used to it.

The trouble with her going there is the amount of viruses she has caught from being around so many other children. She was doing well without the oxygen when she started but a long winter of one cold after another and then getting RSV (even though she does get the Synagis needles) and she now is back on oxygen. She needs 4X the amount of oxygen now then she needed when she first came home from the NICU.

I have been so worried about her lungs since having to go back on oxygen but I have come to terms with it now. I have to believe that they will heal eventually. It may take until she is 3 or 4 years old but she will get there.

 

[DonnaBallona]

oh how I wish Jude was still eligible for the extra vaccines! he was allowed the synagis vaccinations the first winter he was out of the NICU but after that he's on his own. apparently they're super expensive so we had to beg the medical council for them for him anyway. He's not been great the other winters since.

when we were first told he had CLD I didn't realise how big it would become in our lives! they said really flippantly 'well, he'll grow out of it!' and we naively thought it wouldn't affect him that much. how wrong were we!!

I'm glad to hear that nursery are accomodating for her respiratory issues; that's one thing that's been playing on my mind recently. Jude has a permenant horrendous cough so other parents think he's sick when we go out to play centres etc when actually that's just him day-to-day!

Do you have much support, are you able to talk to other families in your area that a child with similar issues? I wanted to join a group called SWAN, it's for sick children with no diagnosis but I'm nervous. it's like admitting there is a problem I guess. Other than that there is no support for us here, other than his appointments and his weekly nurse visit.

xx

 

[jandksmommy]

No, we are in a small community and there is no support groups here. I have not been able to connect with any other CLD moms other than on here or Facebook. I am so thankful for the online groups I have found. Without hearing their stories, I think I would be a nervous wreck about Reese's lungs. It is wonderful to be able to connect with people who have been through this and to be able to give encouragement to new preemie moms.

The Synagis needles are super expensive! The only reason we qualified this year was because she is still oxygen dependent but I had to have her case sent to the 'board' for review before she was approved. At her weight (18 lbs) she needs 4 vials of it at $750/vial (Canadian), and she gets them once a month for the entire winter season!!! I was in shock when they told me that... so thankful it is covered by our health care system . It surprised me when she got so sick and was airlifted to the children's hospital in January to find out it was RSV that caused the problem. The doctors there said that without the needles, she probably would have been far worse and likely would have needed intubation. Such a nasty little virus!

Thank you so much for this conversation. It really is wonderful to not feel alone in the world of CLD and prematurity.

 

[DonnaBallona]

that is so lovely to hear! I have never met anyone with issues anywhere near similar to Jude either; it's soooooooo refreshing to talk to someone that knows what I'm talking about!

Does your little girl have issues with aspirating at all too? that's why Jude is tube fed actually, because he obviously has CLD and some permenant lung damage from birth, but then he inhales all food and liquid too which is just causing him sooooo many problems. still waiting on hearing from the hospital about a bed for him. I am too impatient for this

there are no support groups here for children of a similar nature to Jude either; he is very much mobile and the only groups for SN children are mainly used by parents of children with CP. I feel so cruel taking Jude along, because although he has some fairly serious issues; to look at him you wouldn't know anything is up. I am quite shy too and seriously over protective of letting people into our world so I find it hard and uncomfortable meeting new people unfortunately.

so; how do you cope with your other children and your poorly girlie? I find splitting my time increasingly difficult as Jude's needs grow, change and develop. just as I get good at dividing myself he throws a curve ball and things are up in the air again! I do think I spend too much time with him and not enough elsewhere but I am only human.... I am turning into a helicopter mother because I'm so, so scared he will put something in his mouth and choke on it! any tips on taking a step back?!
xx

 

[jandksmommy]

Reese hasn't aspirated since the NICU. We have been lucky about that! Other than having blind spots where her retinas didn't develop blood vessels, her lungs are her only major issue right now. Well... that and her temper! She is a smiley baby and is always laughing but.... wow! When she doesn't get her own way, she throws a temper tantrum that is hilarious. It won't be funny in a year or two if I can't nip it now but watching a tiny little oxygen dependent baby girl shake her fist in the air and scrunch up her face while yelling is just too funny.

I am over-protective with Reese too and I worry all the time. My prayers every night revolve around her health. I have had to learn to relax a little though because my other children are twins and are only 9 1/2 months older than Reese. They weren't quite 14 months old when Reese came home from the NICU! I bought things like a breathing alarm pad for her bed so that I could relax and spend quality time with the twins while she slept. It has not been easy. My other daughter often gets jealous of Reese. Wants medicine whenever Reese has hers, tries to get Reese's inhalers, the other day she took the old nasal cannula after I changed Reese's and I found her in the kitchen trying to put it in her nose. I try really hard to include her in everything I do with Reese, I let her help when I'm doing Reese's Physical therapy exercises, in hopes she will stop being jealous.

I am considering resigning my job and staying at home full time as a way to limit the amount of illnesses that come into our home but the twins LOVE going to daycare (nursery). I know it would be better for Reese if they didn't go there but I just hate the thought of the twins not getting to go. It is so hard to find a balance between what is best for her and what is best for the whole family.