Feeling down after MRT

[Kaethe108]

Hey there!
We had our yearly MRT scan today (was supposed to be in January already, but Livi had so much muccus, they could not sedate (?) her).
We were hoping for good results, but they told us, that the dark spot in the right lower lung is still there, which means that it is probably already scars. Also there is a new quite big spot in the upper left lung, which looked really huge to me. They said the lung tissue there is like glued together. Also her sinuses are swollen and look inflammed.

Since September last year she has so much muccus and coughing is getting more and more. She is only 22 months and we were hoping it would not go so fast...

We will follow a more aggressive treatment regime from now on. Starting Pulmozyme for the first time. And another round of antibiotics.

Somehow I feel so hopeless now. What if CF is faster then we thought?
i was always sure that she would not have to much serious lung damage until the time when something like Kalydeco will be also available for our girl...
was I too naive?

 

[Aboveallislove]

Is she on hyper sal? If not I'd start that with pulmozyme. One thing I would add too is I've seen a couple folks on kalydeco say what dr thought was permanent damage from scans went away after kalydeco. And one dr Sid it was making them rethink lung damage. Obviously can't know now, but definitely gave me hope. Hugs and prayers.
love

 

[Kaethe108]

Yes, she is doing hypertonic saline twice a day. Before we did 3%. Today we started with 9%.
This afternoon will be first round with pulmozyme.

Yesterday night she had 40 degrees celsius fever and threw up for the first time in her life... :-(

 

[Justinsmama]

Hugs and prayers for your little girl from friends in PA.

 

[Kaethe108]

Thank you for your thoughts. I think nobody of my friends can really understand what it means for a mother to see her baby going through this. I would not hesitate even one second if we could change. If I could take over her disease and she would be healthy.

It's so precious to read here and get some hope!

 

[baco623]

Hi Kaethe, I know you are going through a lot but you are doing exactly what you should be doing, reaching out for help and getting support. You and your family can't do this alone. It is so important that you take care of yourself as well as your baby. I am a 26 year old female with both cystic fibrosis and cystic fibrosis related diabetes. I like your child was diagnosed at birth and dealt with a lot when I was younger. There is no way to tell what is going to happen in the future but trust in your doctors and the medicine, Pulmyzime personally did wonders for me and so did hypertonic saline. I want you to know that although I have had my major struggles I live a productive and happy life. I have my ups and downs all I can do is try every day. People with CF are so so strong and there is no doubt in my mind that your child will be just as strong, even through the toughest of trials. My biggest piece of advice to you and your family during this time and going forward is 1) continue to get as much support as possible and don't be afraid to talk about what you are going through 2) learn as much as you can about CF as possible. The more knowledge you have the better!! If you want to talk more about everything please please please PM me, I would love to talk to you. I have made so many mistakes when it comes to my CF care and I want others to learn from my mistakes. Sending you lots and lots of love and positive thoughts!!

 

[kots66]

Hi Kaethe, sorry to hear your update. I know that you're going through a lot, but please don't feel hopeless. It sounds like your docs are on top of things, and I'm confident that Pulmozyme will help her. Thinking of you and your little one -- please keep us posted.

 

[heidikk]

praying for you and your little one, Kaethe.

 

[Kaethe108]

So we had a follow-up MRT scan last Friday. (It was a horrible trip because our daughter reacted paradox to the narcotics. She totally freaked out, was out of Control, crying, shouting for one hour until finally a doctor came to give her another drug that put her to sleep...)
Anyway...
Almost all parts of the lungs showed significant improvement. Less mucus, less scars than we thought, better bloodflow...
BUT in the upper right lobe theres a part that got worse. :-(
so next Monday we have to go to hospital for our first bronchoskopie and 14 days of IV...
I am very scared and cannot imagine how to spend two weeks with my two year old in hospital.
Any experiences or ideas?

 

[pipersmom]

Kaethe, unfortunately I'm very aware of what it's like to spend time with a toddler..5 yo, 6 yo, (keep going up to 11!) in the hospital..lol. There are lots of posts here about things to take to the hospital. Our constants have been comfy clothes (she never wears hospital gowns..usually tees and shorts or sweatpants), snacks that you know she'll eat (and some for you also), and lots to do. We usually bring movies, and at that age, lots of toys, fun workbooks, etc. Better to have too much to do than not enough! Don't forget any stuffed animals she's attached to. I don't know how it works in Germany, but here my biggest expense when Piper is in the hospital is food for myself. Hope this helps!

 

[jshet]

Another good thing is to buy a couple new activities or toys to give her while she is there. Ask grandparents, aunts, uncles to purchase things to keep her busy like coloring books, books, DVDs , ect. Ask them to wrap them so she feels extra special. Bubbles are another thing my son loved doing while in the hospital. Take some favorite toys with you and leave some at home and have a family pay member switch them out for her. Most children's hospitals have volunteers that can come and visit daily to help keep her entertained. My sons most favorite thing is checking upon arrival if any therapy dogs will be visiting while we will be there so I can have his name added to the list for a visit from a special 4 legged friend. Good luck!

 

[BOOS GRANDMA]

I will be praying for you and your beautiful girl! Try paper dolls we made some when my grandson was in the hospital .. Of course he had to have super heros!! But he played with them for a long time we could make new outfits each day we used post card paper so they would last!

 

[Kaethe108]

So here is an update from us...
we are in the hospital since monday. Tuesday they made the bronchoskopie and the lavage, both went very well.
They found loads of mucus, but NO (!) Pseudomonas. Only Haemophilus bacteria.
Also Tuesday we started IVs (Cephalosporin and Tobramyzin). We nebulise 3-4 times a day HTS 6% and one time Pulmozyme.
Livia is being great. She adapted very well to the new situation and is making all the nurses laugh...
only her appetite is not so big (very unusual for her), so that she lost some weight since we are here. Time to feed her more calories, which was never necessary before.
We should stay for 14 days, but I will try to get her out two days earlier, because sunday 30th is her second Birthday!!!