The last week was on the scary side. Just to follow up about her scans, they passed inspection. Praise God! Her WBC and CRP counts have come back down. CRP is not quite down far enough yet, but was moving in the right direction. Karly hadn't been feeling very well since about Sept.20....probably fighting off a virus. She traveled to NIH on Thursday, Sept.27 with her scans on Sept.28. It seemed as though her neck was a little thick when Tracy left her at the airport. The ENT doc said her esophagus looked thickened. She began experiencing an increased swelling in her lymph nodes on Saturday morning. The swelling just kept slowly increasing, next came pain in her teeth, then pain in the throat, and her entire neck was sore to just touch the skin. By 4:30am Sunday morning she looked like she had the mumps. She texted a photo to her nurse case manager who sent it to her doctor. She talked with her doctor Sunday morning, and Aunt Debbie and Deana drove her quickly to NIH. She was admitted and seen by a doctor on her team. IV antibiotics were started and pain meds. Her pain level was 9/10 which she has only had a couple times in her life. Karly was living in another dimension because of the medication, Versed. I am actually glad that she cannot remember this. The swelling was increasing at an accelerated rate. Her doctor came in and took one look and sent her to the ICU. She didn't have a neck, the pain was intense; she could barely move her head, and couldn't open her mouth. A hefty dose of steroid was administered and given 2 hours to work. After seeing no positive reduction in the swelling, the team was very concerned they were losing her airway. The CT showed her glands were the size of plums pushing on both sides of the trachea closing it. Through much anxiety and fear, we were gently persuaded that she needed to be intubated. This was the first time we had been back in ICU and facing intubation. Her family and I talked with Karly on the phone and felt she was handling it very bravely, and she understood the situation. We were very grateful that the doc that performed it was very familiar with us, Kelsey, and our anxieties. He "handled" me and my questions very well. I teased that everyone must have decided to draw sticks, and he got the short one. Anyway, he called me right after the procedure, it had gone well, she was sedated for the night, and that we had made the right decision to intubate...it was very narrow. I was on a flight the next day. I talked with her nurse case manager first thing as he walked thru the doors to work Monday morning. He went to see her right away and found her awake and holding her phone. He immediately called me and told me how she was doing. I was so relieved that she could be awake and not fighting it. I got to the hospital in the afternoon, and it was a happy time to see each other. My sister and Deana did so well taking care of her, speaking with the doctors, and advocating for her. The swelling started coming down, ENT looked again, and decided that the airway was looking good for the tube to come out on Tuesday. She handled that very well also. She was able to speak right away. It hurt, but nothing like it had been. The pain and swelling were moving in the correct direction. Later Tuesday evening/Wednesday is really when Karly came back into reality. She had to pass a swallow study in order to able to eat again. She went for that on Wednesday. She passed, however, Karly has a steady history of getting larger pills and food stuck. What was really good was that FINALLY that happened during the study. The pill stayed stuck for quite awhile, but what was most disturbing was that her parotids were swelling again at that point. They got her back to ICU for observation. The swelling didn't progress, but took another day to start going back down. Since she had passed the study, she was able to eat...just not much...her stomach didn't want very much and it hurt her glands. We were finally discharged from ICU on Thursday to a regular room. Another first, the floor she likes was full; she was put on the adult floor. It is a change...definitely prefer the other floor and nurses. The swelling has continued to go down. The steroid continues to be reduced. All good things. Another first for the nurses and doctors here was this story. Early the morning she was moving to her new floor, she had stepped on her already bad IV. It was pulled and another was started below that one. They ran medication thru it in ICU before we left. After we got to her floor, she was started on another IV med. After a bit Karly says that she is wet. I look over and at first think she is sweating(she had a heat pack on the new IV) After looking closer I see her IV med trickling out the hole of the previous IV. She was leaking the IV med into her gown and robe. We called in a nurse, she put pressure on it. It didn't stop. She called in another nurse, she didn't know. Finally in comes a doctor who decided to just move up the PICC line placement. She made it happen very quickly. The nurses had said that had heard this could happen, but had never seen it. How odd! Another disturbing event, that perturbed me mostly and frustrated her, was that her Bactrim was discontinued in ICU. I had even asked the ICU fellow that question directly, "When are you going to give her Bactrim that she was desensitized to?" His comment was that it would stay in her body a few doses." But the problem was it had already been 2 days. When her primary doctor heard of this, she wasn't pleased. An allergy consult was required. It was determined that in the current situation with what Karly had just been through, they had to desensitize her again. It was a 4 day process. What we chose to see as good was that since we had no diagnosis and didn't know what the swelling would do coming off the steroid, being here to observe was safer for her. It has all worked out. We have a flight to come home on Monday with home health in place for the IV meds. I can only think that these happen to us for God's greater plan. I just keep trying to find this plan and jump in. He definitely keeps things swiftly moving around us, but so grateful for all of it.
Love, Mom
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