Wednesday, December 23, 2015

Boiling Frogs and other CF musings

So, Faith is home from her latest hospital stay. This one was harder on us all, mentally. This fall we changed CF centers from Tampa to Orlando. Although we loved her doctors and the hospital, her care is becoming more cumbersome since we chose that center seven years ago and she needs to be seen closer to home. Some of the stress was due only to the change in atmosphere. R, F, and I are all first children. We are NOT fans of change. Period. This is not a reflection on either her new doctors, or Arnold Palmer. We really like her new center and especially her new pulmonologist and GI doctors. Procedures and hospital protocols are different and we didn't know what to expect. One example of this was her IV line. In the past she has always had what is called a midline. Picture a tiny straw inserted in your vein on the inside of the elbow and run inside the vein to your shoulder. This new Dr./hospital protocol runs a PICC line. Basically the same thing, but the 'straw' runs almost to the heart and dumps the meds straight into the vena cava. This is a much bigger deal for insertion than any of us are used to, but in hindsight, she likes it better for actual delivery of meds. Remember, this is my example of several things. When Faith was first diagnosed at 18 months we were offered an opportunity to meet a young woman who had CF. We were told that Natasha was 'doing really well' and 'often spoke to newly diagnosed parents'. Natasha was coincidentally inpatient at the time. Weren't we lucky?!? My thought process at the time was "she's inpatient! How well can she be doing?" and we did not meet her. Our story with her circles back around, two states away and un CF related, because God has a sense of humor. But that is another post. Fast forward to our move to Atlanta to be near better care. Faith is two now and I have joined a parents support group. I have also given birth to another child (I was 7 months pregnant when Faith was diagnosed) and again, because God has a sense of humor, gotten knocked up for a 3rd time, despite our joint infertility issues with the first two children. Surprise! None of those drugs needed this time, but I digress. I am now in a parents support group with an AMAZING group of parents that I still lean on today. Most of us have two year olds, but there's this one mother, Linda. First of all, she has her PHD. Secondly, Linda has a 12 year old girl with CF and more life experience than I could have imagined then. Seriously, the woman answered questions that I was too stupid to even know to ask at that point! I soaked up her every word in total love/hate denial, and she intimidated the hell out of me! She was so wise, but surely I was never going to need that information... After all, a cure was right around the corner, right? That's what they all kept telling us. I was never going to need her wisdom because there was surely going to be a cure before Faith was 12! At five Faith had her first Bronchoscopy. This is a procedure where they put your baby under anesthesia, and put a camera down into her bronchial tubes. Sterile saline is squirted into her lungs and suctioned out, hopefully, along with mucus plugs that they can get to in the large airways. These plugs are then tested to determine what bacteria is growing down there. It helps them target antibiotics. Let me tell you, THAT was a Big deal! Yes, its a rather common procedure for CF patients, but this was her first big thing and it was HUGE to us! I often tell Mom friends that post 'minor' surgeries (tonsils, etc) to fb, "There is no minor surgery when its your baby going under." Obviously, we got past it with only a few emotional scars and she's had 2 or 3 since then. Two OR three. I cannot even remember at this point! At nine, Faith had her first IV antibiotics. Again, a HUGE deal! We were sent home with training and administered them ourselves. Again, administering your own child's IV's through a vein is not like giving them some pills. The pills at this point were piling up too, but when you only add one or two at a time you don't really even notice anymore. There is an order to IV's. Its called SASH or SASASH. s=saline, a=antibiotic, h=heparin. Saline rinses the line, heparin keeps the blood from clotting in the line until your next dose. R and I were both a sleep deprived nervous wreck that first time. I was so afraid of that line getting infected. Can you imagine giving your own child a deadly blood infection? Now we are on time #5 and just take it all with us. Restaurants, shopping, church, Disney. We just hook her up and keep on walking. Are you starting to notice a pattern? I was too, in the back of my mind. In the WAY back! During this last hospital stay we were sent to X-ray for a swallow study. The reason Faith was hospitalized was pneumonia, but the reason she was suppose to be hospitalized the next week was to have a feeding tube placed. After a decade of fighting it with her doctors, we had finally come around to its need. So, this still has to be done after the new year, but her lungs had to clear first. This was the reason for the swallow study. It needed to be done for the tube surgery, and well, we were there.. After her study, Faith and I sat in the waiting area for transport to come escort us back to her room. While we waited, they rolled out a baby in her cage. For those of you happily not in the know, a hospital baby bed looks just like a rolling metal cage. The kind you picture for circus animals. As Faith and I sat there joking around I flashed back to her first stay at Shands and her cage. (push it to the back, this is not the time) Then another Mom with a baby came in. She had her toddler in a stroller and had to interrupt her feeding for an X-ray. She came out without the baby, I heard the baby scream, then it was over. Instinctively, I said aloud, "Wow, that's going to be a good X-ray." and meant it. When they X-ray toddlers they sit them in a seat that wraps around and strap them in and send the parents out. The child is not happy. Faith's first X-ray went down just about the same way and we were worried. The technician assured us that it was a great picture due to her drawing in a giant breath and holding it just before she screamed. (more flashbacks, STILL not the time. Push it back) So, Faith and I are sitting there still joking around while these other two, unfortunate Mommies sat there looking shell shocked. In that moment I wanted to go to them. I wanted to put a hand on their shoulders and tell them it was going to be okay and that their babies were in good hands. Theirs mostly, but the doctor's as well. I didn't. I couldn't. Why couldn't I reach out to these women? It all came to me in a rush. Faith was now Natasha and I was Linda. You may think they might have wanted my reassurance. In a lesson that can only be learned the hard way, I knew that they did not. We were the proverbial frogs in a pot. The temperature had been turned up so gradually over the years that we barely even noticed. All at once I looked up and thought, "Holy crap! When did the water start boiling?" This revelation could not have come at a more inopportune time, so once again, Push. It. To. The. Back. When we came home from the hospital this time, Faith had night terrors for the first week. I know this visit affected her more too. Reoccurring dreams about not being able to breathe, in her words, 'drowning in her own mucus'. Hospital staff always assume Faith knows more about her long term prognosis than she does. Every stay is marked by at least one person giving her an education on a new topic about what she may face in the future. This visit was ports and transplants. This round also interfered with her birthday. After the first week of antibiotics we went back for a pft check up. Sitting on the table getting her vitals taken, my girl was all preteen nonchalance. Reading her kindle and holding out her arms and fingers for the routine stuff she's done a thousand times, you could almost hear her boredom. Then her blood pressure came back. The top # was 110. Then her heart rate. High 90's! R teased her about being a duck and it was the perfect analogy. She was all calm and serenity on the surface, but paddling for all she's worth under the water. Her PFT numbers improved significantly and the nightmares stopped. She's back to her old self again and we celebrate her 13th birthday in a few hours. The human brain is a magnificent organ. The adrenaline gets you through the water temperature increase, but it cannot be sustained. Eventually, for your own sanity you get comfortable in your new temperature and we are getting there again. Still, this time, I cannot un-see that this pot is freaking hot!

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