I know it has been over a week since my last post, and I have been meaning to update you for a few days now. However, something always seems to interfere, whether it be helping Ashley with her spur of the moment medical need, making arrangements for her care with the home health nurse, talking to the separate home health company's pharmacist or pharmacy tech, calling the local doctors about her current issue at hand, calling a doctor in San Antonio about an upcoming appointment, taking her to the local Great Clips to have her hair washed, or holding her hand and reassuring her that David and I will continue to advocate for her health and that we will never, ever give up hope.
The week following prom began with recovering from prom. We were both physically, mentally, emotionally, and even somewhat spiritually exhausted from that wonderful event that she was able to attend. She was exhausted from being discharged from the hospital on Friday, waking up at 5:30 am to catch our 8:00 am flight to SA on Saturday, running all over SA with David on Saturday to get ready for prom, having pictures before prom, going to dinner with her prom group, going to the dance for a few hours, coming home to hang out with friends after the dance, working on challenging homework on Sunday, and then flying back to Dallas on Sunday night, before having a follow up appointment in Dallas on Monday. Of course, in the midst of all that, she was having to have her TPN feedings unhooked and hooked up again at random times of the days and the nights, coupled with 4 home health nurse visits.
I was exhausted from managing all of the above and also fitting in as much time with the boys while I was home for a mere 36 hours. After her follow up appointment on Monday, she began to tackle school work, and I began to learn how to become a home health nurse! What started out as a very nerve wracking and unfamiliar experience has become second nature in just a few days time. I can flush her port with saline and heparin, add heparin and other additives to her bag of food using needles and syringes, purge the tubing before hooking up the new food bag, and so much more. I wash my hands singing the ABC song, put on my rubber gloves, and grab my mound of alcohol swabs and get right to work! Never in a million years would I have seen myself doing all of this, but as with everything in life, you just do what you have to do. Especially when it comes to your kids.
A nurse will always still come on Mondays to draw Ashley's blood to be analyzed by the lab before her next week of feedings can be prepared by the home health care pharmacist. A nurse will also be coming on Fridays to de-access her port (take out the 3/4 inch needle) and re-access her port (put in a new 3/4 inch needle) to decrease the risk of infection. Yes, this is a very painful process, one we both dread. Ashley has also been having quite a bit of difficulty tolerating the feedings, so we are hoping that aspect will settle down and be more under control before we transition back to SA.
She can definitely tell when she is not hooked up to the feedings because she feels more weak. Keep in mind that she still cannot even drink clear liquids without pain and discomfort and taking pain medication before doing so. The only two clear liquids she can tolerate lately have been Chick-fil-A lemonade and diluted chicken broth. Since it has now been three weeks since she has eaten any solid food, she is definitely missing that more than ever! I even asked her if I should eat in private so as to not make it more difficult on her. Amazingly, she said that was not necessary.
I also took time last week to make plane reservations for us to fly home this Saturday for two nights. Ashley has an appointment with her local POTS doctor on Monday, April 14, so we can begin the process of transitioning back to SA. Dr. Patel was not willing to discuss taking over Ashley's TPN feedings from Dr. Brown here in Dallas until all of her records from Dr. Brown were faxed to him. He would not have been able to see her until May 1 if I had not had Dr. Browns's office expedite those records to him and then begged two nurses to fit Ashley in on April 14. Our hope is that once he is brought up to speed on the last 5 weeks we have had here in Dallas, he will then contact the local pediatric GI, Dr. Brigman, to see Ashley for her initial appointment sooner than April 23. We realize that he has asked for her to be seen sooner 3 times in the last 6 months to no avail, but we also realize Ashley's situation is more critical right now.
The other big reason we are flying home is that Josh and Ryan will be turning 12 on Friday. For those of you that we have been friends with for a long time, can you believe they are that old? We plan to celebrate as a family this weekend in the midst of their baseball seasons and all the other things going on, and they can have their separate parties once Ashley and I are home for good, and I have had time to regroup. Josh's birthday list was very short. He wanted an air soft gun combo pack at Academy and a cell phone. Too bad he has to wait one more year for the cell phone. Ryan's list contained 6 items, ranging from a new baseball bat to gum. Ashley and I can't wait to see them, David and Chris, and the two crazy dogs we own.
I actually had the opportunity to see Chris last night when he flew to Dallas after school to go to the Final Four Championship game with Ashley and me. (Yes, I did just say that!) Ashley and I had actually attended the two games on Saturday as well. Both experiences were incredible and on Ashley's bucket list. We were able to go to the games thanks to the generosity of Coca-Cola, one of the three big sponsors of the Final Four and also a sponsor of the Ronald McDonald House. God truly orchestrated the entire process on both days, and I can't wait to share with all of you in my next entry.
For now, though, please pray in the following ways. Pray for Ashley's strength and comfort. Living in her condition as a 16 year old is very hard on her in every way imaginable, and it definitely takes its toll after such a long time. Pray for our transition back to SA to go smoothly, both with Ashley's medical care and with our family adjusting to being together again. And, please, above all else, continue to pray for answers. A cause for her digestive problems has not been yet found, and getting to the bottom of that is of utmost priority right now. She wants to eat again and wants to be off the TPN feedings. We want to know why her body will not allow her to eat, so she can be treated and on the road to recovery. Dealing with POTS is definitely harder when your body cannot have proper nutrition as God intended.
Thank you again for all of your ongoing love, support, and prayers. So many of you have done things for our family that I am not even aware of or that I am slowly becoming aware of as time passes. Whether you brought a meal, sent Ashley a card at the RMHD, made a donation to Ashley's medical fund, drove our three boys around, and/or simply just showed compassion by asking about how our family is doing, we are forever grateful. Your actions are truly the body of Christ at work, and seeing that in action helps alleviate the pain and sadness associated with this ongoing, frustrating medical crisis that effects all 6 of us.
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