Tuesday and Wednesday – December 15th and 16th

Today we had the routine physio, training on IV’s and a “washout.” Washouts are available in Sweden and I believe in the UK. They are a way to do PFT’s on little ones prior them being able to complete a normal PFT. This gives the doctors a bit more of a headstart to treat earlier if needed, when decline is seen. The washout is done by filling the lungs with a gas and then monitoring how many breaths it take to eliminate all the gas from the lungs. In individuals with out any lung “issues.” It takes between 6.5 to 7.5 breaths to expel all the gas. May was at 8. They were very pleased with that and said it shows good function and that she sustained little damage due to her late diagnosis!! Yeah! He said that he expects to see a pretty unalarming x-ray. Fingers crossed. So, the PFT is the easiest test for CFers, you wear and mask and simply breath in and out before and after the gas is administered. Hmmm…….we had to sedate Maylie. Incredible the fight that child has inside her, she is truly a “CF warrior!” (Thanks for that term Tess.) Following her test, we packed up and left for the afternoon….like left the hospital. wow! They asked if we wanted to go to town and hang out with Nama and Elle for five hours until the next dose of antibiotics, um, yeah! So, off we went. It is such a gift to be able to leave the hospital it really makes that “prisoner” feeling obsolete, not that you would have that here.

TUESDAY
Today we met with the dietician we did not discuss the Mediterranean diet as I assumed we would. She gave me a couple pointers for meal time according to the Swedes and CF.
1) Do not make food an issue
2) Do not make food a battle it does not need that attention, it only causes problems to have food wars.
3) Meal time should be three times a day with two snacks in between, no more than five meals/snacks per day.
4) With fewer snacks, meals will be eaten and snacks will be snacked, not the other way around.
5) Meals should be well balanced and full of healthy oil and healthy fat.
6) All the children should get to pick what they want everyone to eat for one day a week. The rest of the days parents pick what EVERYONE will eat.
7) Kids who generally don’t like to eat should help with food preparation. Involvement in the making may spur interest in eating.
She said that their diet really should not be any different than any other child’s (unless they have a g-tube) except that you make smart choices for adding extra fat.
9) Very little sugar and processed foods
10) Her main suggestion for us, ” A child’s seat at the table is not a throne.”
11) Don’t worry if a child does not want to eat breakfast of skips lunch, just plan how you will make up for the calories at the next meal. DO NOT offer to make anything they want as this fixes your problem for the day, but causes a bigger one in the future.
12) Maylie’s doctor also said that if she misses a meal or eats poorly one day, don’t panic….if it persists, there is probably an underlying infection and she needs to be treated to get her appetite back.

We tend to let Maylie eat what she wants when she wants and she said, while it is difficult and good growth is crucial to CF you need to establish good eating habits as you would any other child. So 1.5 hours between eating to establish feeling of hunger and make her wait. Should prove to be interesting…

In Sweden, they use a growth chart. But, they use a different technique if the child is more than a standard deviation for the norm. They take the mother and father’s height and weight and can bring up a number for Maylie as what she should be charted at and she was right on target. So you don’t have to compare your child to the family of 6+ footers (thanks to my Burns side of the family for skewing all the charts!) Or the families that think a sit down meal is using a punch card at McDonalds. I was quite relieved to see a more accurate way of deciding if a child is over/under weight or on target.

May was in the “playland” when I had the appointment with the dietician, so she found us in there and then May’s doctor came in and we chatted for a while about May’s drugs, treatment, ect. Such a great atmosphere, May doesn’t have to listen to everything…..just be a kid! Anders (May’s doctor) and I discussed changing her treatment slightly. She will be taking a few new meds in the morning, he is putting her on the nebulized albuterol as I stated previously as well as saline to “mosturize” her lungs. She will be adding in the Bromhexine as an additional mucolitic and “cough medicine.” (While she does not have a cough currently, it is a preventative). Those are really the only changes of meds.

The physiotherapy has proven to be so wonderful. Such a fun way to do airway clearance. We obviously do not have all the balls, slides, trampoline and such here at the apartment. I asked the therapists what to do for her AC if we are no longer using CPT and we don’t have the equipment here. She said that we have to get creative, play chase, tag, tickle her walk like all the different animals, ect. It is weird to not do CPT, but looking at all their years of work with families and not using CPT for over 25 years and seeing how well they are doing, I believe for us this is a good option. It makes sense that the main purpose of AC, whether it is CPT, the VEST or physio is to loosen mucus and clear the airways and with the exercise, huff coughing, thorax compressions and breathing exercises Maylie is doing well. I believe she will have stronger lungs for this change in her treatment plan. It may not be for everyone and I don’t want to confuse anyone into switching ways of practice that are comfortable, I just agree with the need for physical activity to move mucus, it works best for Maylie and it is a way of life that we want to encourage for her. That being said, she moves mucus much more so this way than with CPT. You can actually see her swallowing throughout the physio time. I took a video everyday of her doing her physio, however…..Elle spilled candle wax on the new Droid phone and while everything is on the SIMM card, I cannot transfer any of the media. So, the videos and pictures will have to wait unfortunately. I will post them once we get home and settled. But, to give you an idea, following her nebs on the exercise ball, I hold the ball against the wall and hold her hands and she bounces for five minutes….which we worked up to. When we first got the trampoline, it was a minute. So, after the bouncing, she huff coughs (as well as about four times during treatment) and then runs out to the gym. In the gym an obstacle course is designed around balance, upper body strength, rolling, jumping, climbing, ect. So, the last obstacle course was a bunch of rings that she had to jump from one to the next (approx. 5) and then jump on the dots, go up the stairs down the slide (head first for the position) and run up to the wall, climb the ladder it is about 8 feet high and 15 feet across, so she goes up one side and “scoots” across and jumps of the other side, bounces on the trampoline, huff coughs, walks across two balance beams and starts over. While she deviates quite a bit, runs, jumps on the mats, the therapist said it is extremely important to keep it fun, if she doesn’t like an activity, ask her to do it one time in order for it to go away, but to not make it a struggle or she will rebel at some point. While it sounds like a lot of equipment, it is really quite feasible. We got a cheap indoor trampoline (which I would like to upgrade at some point!!) an exercise ball, painter’s tape for hopscotch, a balloon to hang from the ceiling to jump for, a used slide from mom a tunnel from my friend and her trike and she is ready to go. So, you have to be creative and have fun!! More tomorrow.

MAYLIE PULLING AROUND HER SWEET THERAPIST, JENNI

A GOOD EXAMPLE OF PHYSIO IN SWEDEN