We are now about 1 year from the date of Brooklyn's 1st heart cath in Boston where she had the 1st of her 39 coils placed in her lungs. This last year seems like such a whirlwind but look at how far she has come and how much our other kids have grown and supported Brooklyn in their journey. This was one of the many pictures that we submitted to Boston for their review board in April 2008. Wow has she come a long way during this past year! We are still scheduled to return to Boston for her next heart cath at the end of August. We should know more in the next few weeks once they are able to get her worked into their schedule so that we can start planning our lodging and travel arrangements.
I thought I would try again to update on what is new in Brooklyn's world these days. I have had several unsuccessful attempts at updating lately due to computer/Internet complications over the last several weeks...
Brooklyn is having a great day. As I type this she is getting dressed up like Cinderalla and Ashlyn is dressing up like Belle. Bennett is napping and Zach, Kaitlyn and Jacqueline are at school and Nathan is at work. So, I will try to type fast before my window of opportunity is slammed shut.
Brooklyn is being treated by a new medication to try to get her thrush cleared up since it was running wild in her mouth and on her lips. She is adjusting well to it and it seems to be helping but the progress has been slowed down since last week we learned the importance of Pulmicort and keeping her airways open. On Wednesday of last week I brought Brooklyn in to the clinic for Bennett's 1 year check up. Brooklyn had been slowly declining in her oxygen saturation and her need for breathing treatments and oxygen were becoming more frequent. Brooklyn's fingers began clubbing suddenly and she was having trouble with her intestines backing up and her headaches were back. So, after Bennett's appointment Brooklyn was admitted to the hospital for IV fluids, blood work, tests and to have 150 cc's of blood drawn off to relieve some of her symptoms from her elevated hemoglobin. Brooklyn and Bennett were amazing at the hospital as usual and Nathan meet me there after work so that I could have an extra set of hands and arms to help comfort the two children. Brooklyn had xrays taken of her chest and she was experiencing her airways collapsing again. She started receiving nebs every 2-3 hours and her airways were opening up. She was also on oxygen the entire time but was not maintaining her oxygen saturation levels for any length of time. Brooklyn stayed so still while an Echo was done of her heart to ensure she was not having congestive heart failure from all the shunting and extra work that her little heart has to do every day. After lots of IV fluids she had approximately (3/4 to 2/3 of a cup) of blood drawn off. We stood around the bed and watched as her coloring improved right before our eyes. Nathan then went home to tuck the kids in bed and I stayed at the hospital with Brooklyn and Bennett until about 12:15 AM when we were released and loaded into the car to head home. The 3 of us could have stayed in the hospital overnight for observation but I chose to go home so that I could get the kids off to school in the morning. I was so glad when I was finally able to crawl into bed at 2:00 AM after Brooklyn's last round of breathing treatments. But, it was so comforting watching Brooklyn sleeping so peacefully and so much more comfortable then she had the several days and weeks prior to this day.
Brooklyn has spent the last several days adjusting to her thinner blood and was placed on orapred for 3 days to give her little body a chance to get ahead of the tight airways. During this last week I also had two kids with other illnesses who were kept home from school and some what isolated from the rest of the family to prevent the spreading of the illness.
Over the last several months we have had some major changes in our home to improve the quality of air in our house. Thanks to Brooklyn's disability budget we opted not to have a PCA in our home (to prevent illness) so we have been able to use the
funds for other things to improve Brooklyn's quality of life.
We have had our ducts and carpet cleaned, had a filtration system and UV system installed, our furnace and A/C serviced since we have either the heat or the A/C running 24/7 to filter the air. We have not been able to have our windows open for any extended period of time as Brooklyn starts to desaturate quickly. Today we just had a HEPA system installed on her furnace for additional filtration of the smaller particulates in the air. We are hopeful that this will help Brooklyn and the other kids have a place to breath more easily.
Brooklyn was able to have an addition to our swingset put on as a trip to the park is a chance for exposure for her and she needed a way to get some physical exercise/activity after being confined all winter. It has been the best thing that we have done with her disability budget so far. It is SO NICE to hear the laughter and to see her smiling and playing with the other kids outside again. We are thankful that the company was willing to work with us on the floor models so that we could stretch the budget as much as possible. This addition was in place of any type of therapy to help expand her lung capacity.
We have been working with her to blow bubbles, balloons, etc. to encourage her to breath as deeply as possible. We have also removed all the house hold chemicals and have switched to all natural cleaning products for our home to prevent VOC's from circulating in the air since our house is sealed up so tightly. This change has not only made our home safer but it has saved us a lot of money in the process since we have to clean our home on a daily basis to prevent the spread of illness and infection.
Another change that we have made was changing the foods that the kids eat. We have switched to more whole food and reduced Brooklyn's intake of gluten or (wheat, barley, rye and oats). It has been a long process but has been very helpful for Brooklyn.
We are watching the flu outbreak very closely and have stayed out of the public other than to take the kids to the doctor and we have attended one family function since Christmas and the bennefit in March. But, it is worth every precaution that we can take right now. We will be faced with this again in the fall and we are praying that N1H1 does not take off and create a bigger problem in the fall.
Brooklyn is receiving breathing treatments every 2-3 hours or more as needed around the clock and has been improving daily. She is continuing to grow and change into a very assertive little person these days. She always has something to say and her latest thing when she does not get her way is call people stupid. It is hard not to laugh at her when she does it but she is learning that there are better ways to get what she wants.
Our family was asked to share Brooklyn's story by one of the local news stations. After some very careful consideration and LOTS of prayers we decided that the timing was not right and as much as we would love to help another person or family, we are at a point that Brooklyn needs the opportunity to just be a kid. They have requested to continue to follow Brooklyn's story and if the opportunity should present itself in the future where we would be willing to share her story to help another family or person we will do so at that time.
We hope that every MOM out there that might be following Brooklyn's journey, has an AMAZING Mothers Day!
Thank you for following Brooklyn's Journey and for keeping her in your prayers! Blessings from the Entire Pickens Family!
