Last Saturday Bo and I sat in a waiting room while Timmie finished a two hour MRI on her leg, the one that is still attached to a wound vac. The pain in her foot had intensified and we have all figured out that when she gives in and pushes her pain pump something is definitely wrong. Our prayer was that there was no infection and she would not need surgery. I could see the worry in Bo's eyes, which is rare because he always stays so strong and positive for the both of us. Dr. Carrol, her surgeon, (I can't mention her name without reannouncing her sainthood,) gave us the message immediately, even though it was her day off, that there was no infection and she would not need surgery. We were relieved, but found out that she instead had a bone infarction in her lower leg. The best way I can explain it in my limited understanding is that blood supply got cut off to part of her bone and it essentially died. That doesn't sound good, but that is my oversimplified explanation. Once again she began asking her most common questions: "Will my leg ever be the same? Will I play basketball again?" No one really has a good explanation as to why this happened. They see it frequently in sickle cell anemia patients, and they know it can be extremely painful. The hope is that it will eventually heal itself, but it could take several months to do so. For nearly a week, she has been making slow but steady progress. Her white counts have been on a steady rise which is cause for celebration. Yesterday her ANC was 2500. She was getting more mobile, and even went for two walks with her walker. However, her low grade fever has been obstinate and persistent, causing all of us to worry that we are missing something. Then two days ago, the nausea set in again causing her to feel discouraged and miserable. We (well the doctors...I include myself because I feel so much a part of the daily challenging decisions) were just about to chalk the pesty fevers up to a medicine reaction and start making plans transitioning towards going home, when Timmie let us know otherwise. At 7:30 pm last night she woke from a long nap; she was grabbing her side and yelling out. She reached for her pain pump and hit it four consecutive times after waiting the required 20 minutes between pushes. That was a dead give away; she never hits her pain pump unless something is seriously wrong. This morning a ct of the chest showed two large collections of fluid in her lung that would explain the pain, the fever (which isn't low grade anymore at 102.8 and headed in the wrong direction) and maybe even the nausea. She will go under sedation tomorrow to have another chest tube placed to attempt to drain all the fluid. The hope is that it works, otherwise she will need another surgery. The surgeons reminded us that as painful as it is, she will need to move around as much as she can with the chest tube; otherwise, her lung will collapse and all the fluid won't drain. A predicament we remember all too well since we were just facing it a little over a week ago. It is nearly impossible to get a kid who is fighting feet, leg, and chest pain as well as severe nausea to "get up and walk around a little." The key is to give her enough of the pain and nausea meds that she will feel like she can move without screaming or vomiting, but not so much of the meds that she is completely snowed and unable to open her eyes...let alone move around without falling. A harder balance than one would think. Honestly, I felt a little angry as they reiterated what she needed to do to avoid further complications when in my heart I knew the expectation was completely unrealistic and almost entirely impossible. Last time they gave us these instructions, we sat in the picu by her bedside and she could barely lift her hand. I knew it was misplaced anger, but I'm not sure where to place it, so I guess there will do. Meanwhile, three Homecoming dresses hang in her little triangular closet at the end of her bed. October 20th is a good goal they say...or at least it was. Do I let her find things to look forward to even though I have watched her disappointment more times than I ever want to remember? What choice do I have? There are no words to tell her to stop looking into the future, to stop dreaming, that things just aren't going to work out the way she wants them to. Each October day that comes and goes brings us one day closer to the beginning of basketball season. None of the disappointment she has faced, none of the normalcy she has lost, will come close to the devastation she will feel when she realizes that her dreams of stepping on the court with the girls she loves are simply out of reach. I'm sure we will tell her that there is always next year, that at least she is just a junior, that people miss seasons due to injuries all of the time. The truth is that nothing we can say will change the fact that to a sixteen year old, hell, to anyone, this just doesn't seem right. It doesn't seem real. That literally in a moment everything can change, can be stripped away. At this moment she sits on her bed stirring her root beer icee. Her gaze is distant and I wonder what she is thinking about. About an hour ago I saw her scrolling through Facebook or instagram or one of those things. She scrolled too quickly to really take notice of anything. How trivial it all must seem to her. Now her nurse is prompting her to take her meds and reminding her how important it is for her to hold them down. Her shaky hand slowly lifts one pill at a time towards her mouth. Her daily challenges are getting to the commode and taking her meds. How trivial it all must seem to her. There was one bright spot to my day. I walked by Kenton's room (the cream soda boy) and felt compelled to stop and give him a wave. He gave me the most enigmatic wave anyone has ever given me....probably because I'm not all that exciting or impressive. He just recently had his bone marrow transplant. He gave me a double thumbs up and a grin swept across his entire face. I could read his lips as he looked to his dad and repeated, "Is that Timmie's mom? Is that Timmie's mom?" You know, it's funny...these kids don't get much of a chance to meet, but they inspire one another. Even though it seems that Timmie has had her fair share of hurdles, she will face this one head on and prepare to jump, just as she has all the rest. She will do it with a green Team Kenton bracelet on her wrist.
No comments:
Post a Comment