At least she is keeping up with her homework.
We got a chance to break free from the hospital and were sent home! I know many of you are thinking, what happened to the long extended stay? The good news is that after a few days, we were able to get a few results back and found out that Sutton has Influenza B. That changed a lot of things since they weren’t going to do the Bronchoscope with all of the inflammation in her lungs. The other factor was that while she does have a bacterial infection, they were no successful at getting the picc line after a long try in both arms and we were back to the "no tubes attached" approach at dealing with her illness. We discussed with the doctors that there was no real need to be at the hospital if we were able to administer all of her treatment at home. They also relayed that they were comfortable and confident in us to stay diligent in her treatment to get her better. We will get some good bonding time together with the increased treatments.
Let me give you a snapshot of our day….
Up in the morning with SourceCF multivitamin to replace un-absorbed fat soluble vitamins, Poly-Vi-Sol to increase vitamin D intake, Tamiflu to treat the flu, Omnicef to treat the bacterial infection and we haven’t even had a meal yet. Once all of that is down, it is on to Creon, an enzyme to help absorb fats, Prevacid to help absorb Creon, Formula mixed with rice cereal and salt to replace the loss of salt from sweating. Once that is finshed and we take a moment to digest, dad gets a cup of coffee and we are on to the vest therapy for 30 minutes and possibly Albuterol if needed. About an hour and a half and we just got the day started.
After nap time, its time for another meal! The best part about the mid day meals is that all we have to do is the Creon, Formula, rice cereal and salt. We then go through another round of waiting, therapy and possibly another nap. (Rinse and Repeat until dinner)
Then comes dinner. Another round of Prevacid and Tamiful, Creon, Formula, rice cereal and salt. After our break, another round of therapy, but this time we are going to add in Pulmozyme, an inhaled medicine to help break down mucus in her lungs.
If I lost you along the way, that’s one antibiotic, two vitamins, one acid reducer, one antiviral, two nebulized meds, specially mixed food, salt, and 20 pills of digestive enzyme. Did I mention that the Creon pills have to be broken open and placed in apple sauce on a spoon. Sutton is a pro at eating food from spoon. After all she has been doing it since her second week of life. The best part about it all is that our brain function is getting sharper each day as we remember and coordinate everything. Let’s not forget about diabetic, insulin dependent dachshund…don’t worry, there isn’t a blog for that.
There are many times that we all wish we could snap our fingers and make something happen. I know parents wish this more than others. We have many times mentioned that it would be nice to "take a pill and fix everything" We wish for that ONE pill that could take the place of all of the craziness that is our normal. It would give us, and eventually Sutton, so much of our time back. We enjoy the special time we spend with her, but we would much rather spend that time doing something much more fun. We are getting close to that pill, so close we don’t even have to imagine it.
Following the introduction of Kalydeco, the research has followed to expand that dream to so many other Cf patients. They are close enough that another large percentage of the CF population is in the testing phase of their cure. Sutton isn’t far behind that group and they are in earlier phases of testing for her little pill. It all takes money and we would give everything we have to get there. This isn’t a sob story to try to get people to give money, its a plea, a continuing plea from a parent, father, mother, brother, grandparent….the list keeps going, to help us fix this. We all want to fix things for our kids, and we are so close, we have a fighting chance. I’m not asking anybody to empty their pockets, but rather help us get those small donations from our friends, neighbors, maybe even mere strangers. Stand beside us as we are part of something huge. I believe that our network of friends and family have the capability to be huge in this fight. We might not ask for this stuff to be placed in our lives, but maybe we were all placed in this for others lives. We can bring a momentum to this cure like they have never seen. I have been told that we are a passionate family, dedicated and determined. I tell people that they haven’t met the whole family. We are Team Sutton Grace because of all of you. From the deepest depths of our hearts…Thank You.
Wow … that is quite a routine …. I know that she is worth every bit of it. Get those instructions ready for Aunt Sonny so that I can babysit once we are back in Atlanta. Big hugs to all of you ….