Now that we seem to have “turned a corner” in Abby’s recovery, and the outlook is not so dismal, I am ready to share what has been going on over the past week. I’ve only discussed it with a select few, mostly via texts. I haven’t been able to talk about it with any amount of clarity until now. That is really unlike me, but I guess we all have our moments of weakness. This week was mine. However, I think my moment of weakness has actually made me stronger, if not in physique, then in faith! Get comfortable because I know this is going to be a really long post. You might need a beverage too…and maybe a snack! Most people know that Abby has had a rough couple of months. She has had numerous sinus infections, tonsillitis, a couple pneumonias, and even the hand/foot/mouth virus. She has completed like 7 rounds of various antibiotics. She has just not been able to kick whatever has been going on with her until the next thing had her in its grips. Through it all, she tried to feel better. She tried to smile. She tried to play. Last Saturday, we took her in to the pediatrician’s office for a shot of Rocephen and a chest x-ray. Pneumonia again. Her right lung was completely filled with fluid. Her left was congested with scattered infiltrates of inflammation, mucus, and yuck! I was having trouble keeping her clear enough to breathe on her own. The doctor who saw her warned us that I had done just about all I could on my own to help her and that we might need to consider the hospital if she did not respond really well and really quickly to the shot. By Monday, I knew I needed help, and I was ready to accept it. I called the pulmonologist. They had no appointments, so we were scheduled for Tuesday. I continued to do cycles of breathing treatments, chest percussion therapy, suction, suction, and more suction. I got her through the night. On Tuesday morning, we saw her new ENT, who recommended removing tonsils and adenoids because she has about 70-75% blockage of her airway with them in place, and her sinus infections and tonsillitis cannot clear completely until they are gone, but we did not schedule the next visit because he wanted a chance to follow up and discuss her more in depth with pulmonology and sleep medicine doctors. He doesn’t know if the benefits from surgery will outweigh the risks of sedation. We went straight from that appointment to the pulmonologist’s office. He listened to her, looked back over her file, asked some questions, and sent us downstairs for another x-ray. When we returned to his office, he told us that her lungs looked better than expected, so whatever I had been doing (non-stop chest percussion) had helped. He agreed that she was not clear by any means and that she needed help, but he said he did not feel like she needed to go into the hospital. He said that there was really nothing they could do for her there that I was not already doing for her at home, except IV meds, and we could do more shots at the pediatrician’s office if those were needed. Ok…In some ways, I agree. I would not want her to go to the hospital if I can care for her at home. There is like 1 nurse to every 6 kids. What would the other 5 kids have that she doesn’t?...stomach virus, strep, flu, the possibilities were scary. We’ll stay out if we can. But wait! Nurses have a little help. There is a doctor (or 20) telling her what to do. She doesn’t have to second guess anything because orders are clear. There are LPN’s and CNA’s that monitor vitals and share some of the responsibilities of her care. There are Respiratory Therapists who do percussion therapy and deep suctioning for maintaining her airway. With me, it’s just mommy instinct and good sense (hopefully). With nurses, someone comes on to relieve them when the shift is over. My shift doesn’t end. Granted, I do have Doug here temporarily, but he has no idea what to do for her in crisis because he doesn’t have to care for her on a daily basis, and I have Emily and Chloe, who are awesome helpers, but I can’t put too much off on them when Abby is critical. It’s pretty much all me. Think I’m complaining? Nope. I’d do it anyway. She’s my girl! Back to the pulmonologist… After we decided that Abby would not be admitted, he told us there were a few other things he would like to discuss now that we “know what we’re dealing with,” which translated to me to mean now that we have a definitive diagnosis. Mind you, we were just there for her routine visit on Oct. 23 (before receiving the Walker-Warburg Syndrome diagnosis), during which we discussed being “proactive throughout the winter to ward off, or treat quickly and aggressively, anything that affects her this winter.” It was almost like a pep talk…Are we ready team? Let’s GO!!! Anyway, he told us that he would like for us to start thinking about how far we want to go to treat Abby, how heroic we want efforts to be when she is in crisis, about her quality of life, about being bogged down with a trache and a ventilator at some point, and several other things I don’t remember because I realized we were having “the talk” and I had not taken a breath in quite some time. Breathe. Breathe. Breathe. Tune back in... as he said “I’d like for you to start working with the palliative care team to start making some ‘final plans.’ We need to know ahead of time if you want us to prolong this or just let it happen naturally.” Excuse me? You want me to just let her die because she is sick? Dude! Have we met??? You don’t know me or my little girl very well! She has beat illness waaaaaaaaay worse than this. She stopped breathing completely. She flat-lined 3 times. She died already, and doctors without the diagnosis brought her back! She has beat 20+ pneumonias. She has overcome not being able to walk, talk, or function as a “normal” person might. She has taught lessons about life and faith to those who were receptive to learning from her. She is NOT an injured animal we will “put down” to ease its suffering. She is my kid! I had to gain control of my “voices” before they said something I would regret! I was NOT prepared for this conversation. I should have been. I should have known that it will be very easy to see that diagnosis instead of my daughter. She is no longer Abby, who just happens to have WWS (and has totally kicked its ass!); she is now the WWS kid. Medically speaking, it defines her now. Mommily speaking… IT DOES NOT! This is still my child…the same child we were going to aggressively fight for a month ago…the same child who deserves to be seen as a child and not a diagnosis code. “359.0 – Congential Muscular Myopathy/Dystrophy” is not her name. Her name is STILL Abby Rose Barrett! Now before someone plans a lynching party, let me play devil’s advocate… In his defense (which has taken me all week to accept), her doctor was saying, without speaking these words that I am SURE he meant, that he was completely confident I could handle this acute illness at home but that while he had us there, we probably needed to think ahead a bit and make some plans, even if they were tentative and needed to be altered later, so that WHEN things start to happen, be it in “2 days, 2 weeks, 2 months, 2 years, 6 years, 8 years down the line…” that we would have prepared and would be ready to handle it instead of being slapped in the face with the reality that is, at that time, upon us. (Not to be picky, but it bothered me when he broke the “2 pattern.” He could have easily gone on to 22 years instead of switching up to 6 and 8, but I digress…) As the week went on, Abby got much sicker. She all but lost the ability to cough. She was so weak. Her fever hung at about 103, though meds could bring it down a degree or so for a couple of hours. The antibiotics seemed to do nothing. She lost the ability to keep her oxygen saturation level up, and she was crashing. I had an emergency tank of oxygen here, and when her O2 level went down to 82%, I hooked her up. She was blue/gray and nearly unresponsive. I called the medical supply company for more oxygen and called the pulmonologist for help with getting more oxygen. It took a while, but we got more rescue tanks here. We are still waiting on a concentrator, but that is another story! I asked if we should be admitted now, and the response from the doctor was that ultimately, the outcome is going to be the same (whether she is at home or in the hospital), so we need to decide how we want it to happen. I stopped what I was doing, put aside all of the worry and frustration I had developed over the last few weeks, and I prayed. I prayed for strength and healing. I prayed for her to do what God intended her to do. I prayed for His will to be done for her, to her, through her. I prayed to have peace no matter the outcome. That was Thanksgiving night, one of her most critical. I felt her slipping away. I prayed to be thankful for the blessing of each day I have shared with my baby girl. I prayed. I just prayed…and I drifted to sleep with the sweetest little clammy hand resting on my arm. I woke up Friday morning to the most beautiful toothy smile I had seen in over a week. She was still holding on to my arm. Her fever was gone. I turned down the oxygen and then took her off with no dips in her saturation level. She was, and still is, extremely weak. She has quite a road to full recovery, but she will recover from this pneumonia. I have no doubt in my mind that there will be more close calls, more illnesses, more uncomfortable talks with doctors, just MORE in her life. She had a really good day Friday, so later in the afternoon, Doug kicked me and the big girls out of the house. He sent us on a few errands. I realized I had not even gotten dressed in several days. I needed a change of scenery, even if just for a few hours. Thanks, Doug! Today has continued to be a good day. No fever so far. She has been more demanding today wanting to be entertained and wanting to play. She still has a rough cough, but it is a little more effective, and all of the muck in her lungs is breaking up and coming out slowly. We are suctioning a lot. I’m grateful to have my high-maintenance drama queen coming back to me. So, in summary, we had an emotionally trying week, but I did learn from it. Here is what happened in our journey with Abby… The pulmonologist asked that we get involved with palliative care (kinda like Hospice) to assist us in making some final plans for her, for coordinating doctor visits, and for help in handling issues as they arise. He asked us to consider tissue and organ donation and a DNR (No Not Resuscitate) order, but right now, I have to refuse that. I cannot be the one to make the decision to let her die when I know there is so much life in her. When things get worse, MUCH worse, that decision might be a little less daunting, but for now, the decision to take her from this earth belongs to the Almightly. I’m nothing special. I’m just a mommy who desperately wants to hold on to her baby as long as possible. I am humbled and honored by all of the posts, “likes,” comments, shares, texts, calls, and visits to check on her and us. I apologize for not sharing all of the week’s drama as it unfolded, but I honestly thought this week might have been my final with her, and I just wanted to shut everything and everyone else out. I wasn’t ready. I’m still not ready. I doubt I’ll ever be ready, but I know this is not about me, and that I am not the One in control. And, of course, after my little prayer session Thursday night and the sight I awoke to Friday morning, I know I will not be alone when she leaves me, whether that happens in 2 days, 2 weeks, 2 months, 2 years, 22 years, or 222 years!!!
Posted on: Sat, 30 Nov 2013 22:34:56 +0000
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