I arrived at the hospital before 6 am since Dr. Russo said he would be here early today. Ashley had not slept well because her stomach hurt so frequently and so intensely from hunger. She mentioned that she had come close to calling me several times during the night to come back to the hospital. As soon as the nurse finished helping her back in bed from a restroom visit, she fortunately fell back to sleep.
Dr. Russo finally came in the room after 8:00 am. I was honestly not looking forward to seeing him. His arrival would mean the beginning of what could possibly be a very long and truly hard day for me and especially for Ashley. Since she had still not been able to eat more than 1/2 of a popsicle at a time over the last 24 hours, I was certain the NG tube (feeding tube through one of her nostrils) placement was coming.
Ashley and I first visited with him briefly in the room while the new day nurse, Kelsey, administered Ashley's morning medications. Ashley must now have the morphine prior to eating 1/2 of a popsicle and then having her morning and bedtime medications. If she does not have the morphine, then eating and taking the pain medications makes her abdominal pain skyrocket to an unbearable level. She can manage and push through the pain as long as she can keep it under 9.5 (out of a 10) level. We have even discontinued her vitamins and supplements since she has been on IV fluids and since she has so much pain with every pill that goes down.
I then asked Dr. Russo to visit with me outside the room, so I could find out more about the procedure. I had in my typical fashion, of course, researched the procedure more in the past 24 hours and wanted to make sure that some particulars were definitely included in the procedure. For instance, I wanted Ashley to have ice water at hand to drink prior to the tube being placed and while the tube was being put down. At some point in the conversation, I became emotional and starting crying. I somehow, by the grace of God, had avoided crying these past 3 weeks, until yesterday. That is when the lack of sleep began to finally catch up with me.
I first cried when I talked to Ryan on the phone in the afternoon on Sunday. He just sounded so terribly sad, and I just hated hearing that in his voice. (Josh had sounded sad when I had talked to him one day last week, but I was more rested and therefore not at an emotional breaking point then.) You realize that when you can't be with those you love that you miss the little things you do together. For instance, I have usually been the one to take Ryan to his baseball tournament games on the weekends over the years since David always works on Sundays and often works on Saturdays as well. Ryan and I always stop for ranch flavored sunflower seeds and a gatorade prior to his day of games. The ritual is just our routine, and we both desire routine.
When I began to cry while talking to Dr. Russo, however, it was due to the fact that I knew how much Ashley wanted to get home to see her dad, her brothers, her dogs, her friends, AND to attend prom on Saturday. I wanted him to know how much she was missing what home entailed and how much I wanted to get her home for the weekend, even if it meant having to come back to Dallas next week. At some point following my tears, we revisited the NG tube particulars, and I was asking if her port would play a part in any of that process. He asked if her port was unable to be accessed, and I said no.
You see, when Ashley first met Dr. Russo on Thursday, after she was admitted on Wednesday afternoon, two ER nurses had not been able to access the port. Yet, after his hospital rounds on Thursday, one of the pediatric oncology nurses accessed the port right away. Upon noticing his reaction to this important piece of information, I then asked if we could try feedings through her port instead. To my amazement, he said that he could try TPN (Total Parenteral Nutrition) feedings through her port, even though it is not an ideal option. As with most medical situations, there are risks to TPN feedings and extra care will have to still be taken to keep her port line very clean.
Since Ashley had also been able to finally start the successful 24 hour urine process, Dr. Russo was willing to let her continue with that and not have to insert a catheter to gather the much needed specimen. I thought he might give up the catheter idea when I initially arrived at the hospital this morning and found the nurse helping Ashley with her bathroom visit. However, I never in a million years expected him to modify his plan for feeding her. I knew she would be so relieved when I walked back in room 606D and told her the amazing news. Sure enough, she was....
The rest of the day involved meeting with the dietician, Lisa, and learning more about how the TPN feedings work exactly and how she determines precisely how much of what (fats, etc.) to put in them. Ashley and I were comforted by the fact that she has had two other POTS patients with difficult feeding issues. She was very surprised that Ashley could not even digest water without having stomach pain and that Ashley was also wheat and dairy free, making her transition from TPN to liquid foods to solid foods even more challenging. Lisa's intentions were to instruct her intern to research Ashley's possible diagnoses, especially the porphyria.
We also made time to take Ashley down to the on site hair salon to have her hair washed. We had applied the waterless shampoo a few days ago, but that was a very temporary fix. The bathtub in the hospital room is too low for her to get in and out of without a lot of pain. The girl feels like a new woman with clean, soft, and fresh hair now! Getting out of the room and going somewhere else, anywhere else, is always good for her! And, I am quite a site maneuvering her wheelchair with one hand and her IV pole with another! I think I have found the secret to having males of all ages hold doors and elevators open for me now....
Obviously, your prayers are working as evidenced by the fact that Ashley was able to be placed on TPN feedings instead of NG feedings AND by the fact that she avoided the catheter all together! Here are the new requests, however. Pray that she can begin to tolerate the TPN feedings well as evidenced by her soon to be daily blood draws. Pray that she can add other clear liquids to her diet. Pray that test results come back as soon as possible. Pray that we can depart for San Antonio and prom weekend no later that Friday.
Many of you have asked how you can help our family. Feeding the 4 hungry Roper boy (especially ravenous Chris) is always helpful. One less thing that David and the boys have to worry about, and one more thing that I know is taken care of in San Antonio. Debby Villers is organizing meals for them, I believe. Decorating the hospital room has become a favorite pastime for us, so mailing cards or little kid pictures or just anything to us, would be great! You can send them to: Ashley Roper, Ronald McDonald House, 4707 Bengal Street, Room 214, Dallas, TX 75235-8007. They will forward them to us in San Antonio should we leave town. Again, thank you again for the love, support, concern, and most of all, PRAYERS!
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