“To admit you were wrong is to declare you are wiser now than before.”

“To admit you were wrong is to declare you are wiser now than before.” Yes….I have been known to misinterpret people, read things incorrectly and jump the gun….for those of you that know me well, feel free to laugh out loud! This is not to say that our trip to Sweden has been anything but INCREDIBLE and a truly life changing experience for how we will treat our daughter, just not exactly how I described it earlier.
So, I will do my best to give all the information to the best of my ability and correct the preconceived notions that I had prior to our visit with the amazing Goteborg team.

Monday December 14th

The day started off incredibly well despite sleeping through our alarm and only having 25 minutes to get myself and Maylie ready for the walk to the train. As to be expected I went to the wrong building,forgot to bring many of the items specified in the “don’t forget to bring” email and ended up fifteen minutes late to May’s first physiotherapy appointment with Margareta Sahlberg. Margareta was an incredible woman that taught me more about respiratory therapy, physiotherapy and basic CF in an hour than I have learned over the past couple of months. She had a number of wonderful tips, some may be obvious or commonplace to many of you…but they were not for me, so I will assume it will beneficial for at least someone.

The first technique that she showed me is that nebs should be given in conjunction with bouncing on a exercise ball. Maylie vacillated between bouncing while sitting on my lap and having me sit behind her and hold her hips while she bounced. She loved this, it makes the time more fun and they believe that it encourages bigger breaths…and really good deep breaths when the giggling begins! Another tip from Magareta was that as soon as possible the mask should be put aside! They only use masks until kiddos are about two years old. They use them on occasion when there is nasal congestion, but then only for the first few breaths (10-15) to help moisturize the nasal area. They promote the mouth piece as it gives a much more direct lung treatment, not having to worry that the medication may go in through the nose and then be blown back out through the nose prior to it reaching the lungs. Makes sense. Prior to this Maylie had never used a mouth piece, we had always been really hesitant about it, but she took it like a champ!

Another technique they use is called thorax compressions. I am sure you can imagine what this means, I could do a quick video if anyone wants, but you “intertwine” your fingers between all the ribs (facing towards or away) and then you listen/feel for the exhale and then about every other breath, you compress slightly, (it should feel good, not pain or too much pressure) and then almost vibrate your hands ever so slightly. The whole time lasts only as long as it takes for a long exhale. We did approximately five each time, either following physio or when she stops to “take a break.” However, she said anytime you can hear congestion and want to help loosen it is a good technique.

Maylie was also taught to huff cough, on the first visit. Yet another technique that I thought was a long way off. So interesting how you realize how easy it is to teach, when you know the techniques! They used tubes about the diameter and length of the mouth pieces for the nebs. Then they took May to the mirror and had her “fog” it up and then draw smiley faces in the clouds. She loves it, now she makes “clouds” every time she sees a mirror and she can exhale much longer than I expected and she has us write names in the clouds…it so sweet.

MAYLIE’S FIRST DAY OF HUFF COUGHING

Pulmozyme. Okay, my understanding of all of this was way off. They do use pulm, they just don’t believe it is a wonder drug and feel it should be used in fairly specific populations. Most kids are not on pulm here, unless they have had pretty regular chronic coughs. Anders (May’s doc) will be keeping her on it for the next year or two with hopes to take her off of it once he sees her without a cough for a prolonged period of time. He also said that he does not put patients on it that are older with more severe lung disease, he compared it to taking a bucket of water to a burning house. As far as administering the drug, they give pulmozyme at night. Due to the “work” that Pulm has to do to break down mucus, it is best to give it prior to sleep so that you don’t exhale the drug out of your lungs too quickly, before it is able to work as it is intended to.

One of MY personal favorite things that they do here in the hospital, which is an absolutely novel concept, is a drug called EMLA cream. You put this lovely little patch on your little peanut and then an hour later the skin is completely numb and you cannot feel the IV placement. Sure would have made the last year easier, and may have kept Maylie from becoming quite as nervous around hospitals. It was an incredible experience once she realized that the IV was placed and she didn’t feel it, she started laughing and said, “Mom, we have to get the stuff at our home!” The women that placed the IV were the picture of comfort. They were both grandmothers and were so incredibly understanding that she was terrified and talked with her every step of the way, blew bubbles and then when she was done, she got a little bear and Tinkerbell stickers. Needless to say she was quite happy!

Then Maylie got to play for a bit while I got a quick rundown on what the week would hold. She will be doing physiotherapy twice daily, she will have her PFT’s done (more about that later), meet with a dietician every other day, have an xray and then I will be taught how to do the home IV’s. YIKES! Still not real excited about that.

Her meds have changed slightly while we are here they are as follows:
1) Ventolin (albuterol) nebulized rather than in the inhaler (they feel that is quite ineffective) in the morning
2) Sterile saline or 3% with the ventolin in the morning
3) Pulmozyme once a day at night
4) Bromhexine a pill, given three times a day.
And then of course her antibiotics, PROBIOTICS and a truck load of vitamins!

As far as the children’s hospital, all I can say is it is incredible. You walk in the door and there is a huge wooden boat with ropes with all these levels and kids playing on it, it is very welcoming and not so “hospital-like.” May has a gorgeous room with full length windows looking out at the forest, live plants and traditional contemporary swedish design. Then the ward itself has a play area that is larger than our house, it is full of dolls, trucks, trains, dollhouses, craft tables, couches, esspresso machine and a foosball table. They actually get meals in a dining area, they encourage the rooms mainly for sleeping otherwise…..there is so much to do, we were rarely in the room. So different. It is so nice because May is in the clinic that is all scheduled, so everyone is screened for pathogens and the majority of the patients are oncology and cardiac. May was the only CF patient in the ward, so we were free to move about anywhere, and we could as May was not stuck to an IV tree. That is such a gift. It can make the treatment time a bit more difficult, but it is so nice to not have her connected to a pole for a week straight. Maylie kept saying this is my favorite hotel! I think that is probably a good sign. Then downstairs, there is a game room, a play room (and that does not do it justice) an arts and craft room, a pool room, library (books, cds and dvds) massage room and a parents lounge while the kids play. They also have quite a few kids that are here for extended periods of time, so they have a school as well. If they had internet they would have to throw us out!! Maylie did not take advantage of the play groups or arts and crafts projects as we were so busy, but they looked incredible.

MAYLIE ON THE BOAT

So, all in all…… an exciting week. While this was not super helpful in giving new ideas……more is to come and I am certain that there will be a couple of things to take away for most everyone! Thanks for checking in on our journey!!