One of Kinsey's favorite books (and mine, too) is Guess How Much I Love You. In it, the little rabbit tries to tell the big rabbit how much he loves him, "As high as I can reach" for example and the big rabbit can always reach higher or hop higher. The little rabbit finally says, "I love you all the way to the moon." The big rabbit smiles and pats the little rabbit to sleep after which he says quietly, "And I love you right up to the moon, and back." So Kinsey or I will often say, "To the moon and back." Sometimes one of us will even say, "To the moon and back, and to the moon and back and to the moon and back and to the moon and back and to the moon and back . . . ." That's what the last few days feel like, with a very different destination.
The weekend was mostly uneventful following our Friday clinic visit and beginning the home IV antibiotic administration regimen. Sunday afternoon, we went to look at playground ground cover at a park on the east side of town and had a little lunch on the grass. Jillian played a bit on the playground which made Kinsey sad, but she said she was just glad to be outside and she would play as soon as she gets her own playground. On the way home (at 2:15), Kinsey's gums began to bleed. We had her drink cold water and the bleeding seemed to stop after several minutes. She crawled up in my lap in the recliner at home and we both went to sleep. When she woke, I saw a bloody blob in her mouth. I called Ann and Audrey over and Ann got some gauze to attempt to retrieve it. We weren't sure if it was attached or not but it came right out and Kinsey again rinsed with cold water. No bleeding. We told her it was time to take the bad medicine and she, as always, started to cry. When she started to cry, the bleeding began again. It wouldn't stop. We got the medicine down her but it wouldn't stop. I called the doctor. He said we needed to take her to the E.R. We did. Her platelet count was 5000 (again 200,000, 300,000 is normal; below 20,000 is dangerous). Worse news was that her red cells were down dramatically and so were her white cells. The neutrophils (the ones we had been so excited about having jumped to 100) were back to zero. Across the board her numbers were actually worse than they'd ever been! She needed a platelet transfusion, to be followed by IV antibiotics, to be followed by whole blood. It looked like we'd be there until 2 a.m. But that, of course, would have been if they didn't have us wait an hour or two between each step. At 1 a.m. the pediatric E.R. closed. The nurse started her whole blood transfusion and then moved us to the regular E.R., into a storage closet (since she needed to be in isolation and the few rooms with doors were taken. The Pediatric nurse advised us to remind the E.R. nurse of the specific steps for broviac care. She said she'd made notes indicating that Kinsey needed her temperature taken again at two, and vitals are normally taken regularly during a blood transfusion to monitor for negative reaction. After we were moved into the "closet" (one wall was lined with hanging crutches of all sizes, the other with oxygen tanks), three medical personnel came into the room. One needed an oxygen tank; the other two needed crutches. NO ONE even looked at Kinsey. At 3:30, I went in search of someone as her transfusion was about done. They said they'd send someone in. When the last few drops were going in, Nurse Michelle arrived to see what we needed. We were tempted to unhook her, attach a new clave, flush and heprinize her broviac ourselves, but we thought perhaps with a blood transfusion, there was a step we'd miss. Nurse Michelle tried to flush the line, splattering blood drops all over the floor. I asked if she'd take Kinsey's temp and she said she didn't usually do that until we were ready to go. I asked her to humor us since the other nurse indicated it should be taken every hour. It was normal. After a few more brain-lapse moves, she let us go and we arrived home just after 5 a.m.
On the way home, Kinsey began crying that her mouth hurt really bad. Her left cheek was hot. We gave her Tylenol en route and then I bent over her car seat to hold her. I put my cool cheek against hers and the pressure and coolness seemed to help. She got quiet. I raised my head up to see where we were and she reached out and pulled my face back to hers. My opposite jaw was throbbing. My knees hurt and I gripped the car seat tightly to brace myself so I wouldn't bruise her with any sudden bumps in the road. I thought, "This is Hell." But I quickly realized it wasn't at all. I was holding my little girl. I was doing something to make her feel better and in the cool morning the warmth of her jacket made my aching jaw feel better as well. She was okay for the moment, and we were taking her home. This was not Hell.
When we got home, her temperature was 101.8, the highest it had been since the 105 middle of the night episode early Friday. We went to bed for a few hours and got up to get ready for the Monday clinic visit. When we arrived at the clinic, the hematology nurse said, "Oh, what are you guys doing here?" We said, "What? It is Monday, right?" She said since we'd been at the E.R. all night and Kinsey had gotten 2 transfusions and a CBC we didn't really need to come in. We mentioned the mouth pain and suggested it might be good to see a doc, just to ask if we should consider switching antibiotics again. Night fell, and a doctor came in. Kinsey was a little more subdued than usual (probably being up all night at the E.R.) and the doctor, one she'd only seen once before, examined her without complaint from Kinsey. She then told us they needed to admit her. We were, needless to say, shocked. She explained that they suspected a fungal infection, since she still had a fever (100.3) and had been on antibiotics. She said they'd need to administer a serious IV drug with lots of potential side effects such as hard chills and kidney damage. She'd have to be in sub-acute for close monitoring. I asked how bad a fungal infection might be, meaning was it treatable generally and would it interfere with her Aplastic Anemia treatment. She said simply, "It can be really bad." I was afraid to ask the natural follow up questions because I didn't trust my voice or composure. She went on to say sometimes these infections could invade the bone or organs and treatment could last months or years. I asked how long she would be in the hospital. She said as little as 24 hours but probably several days at least. She said if the drug seemed to work, they'd want to keep her on it for a long time. If it didn't seem to work, they'd keep her on it and assume it was just resistant to treatment. So I asked where or how the 24 hour possibility fit in. She said, "Plan on several days."
To date, I have in such moments been able to reach deep inside myself and find a reserve of energy and stamina that has surprised me more than once. Moments when I thought I'd totally lose it, I've been able to hold it together, especially in front of Kinsey. I reached. I couldn't find it. I reached again, taking a deep breath. No reserve left. I lost it. Kinsey wanted to know why I was crying and I said just because I was sad that she had to go back into the hospital again. I left the room to call Ann and go to the restroom. I thought I was going to be sick, and I cannot remember what even happened in the restroom except that my cell phone rang. It was Kathy Wyatt from Channel 13. I asked if she could please call back later. She very graciously agreed to call the next day. (Bettye would shake her head at me for having my cell phone on in the bathroom). Ann didn't answer and I went back into the room where more doctors had shown up to examine Kinsey.
They asked questions and more questions. "How long since she was diagnosed?" A month. "How long was she in the hospital?" Two visits: 3 days and then 11 days. "When was she released?" 2 weeks ago. "Any other problems at home other than the fever?" You mean besides administering medications 3 times a day, flushing and bandaging a broviac, figuring out how to keep her clean, keeping her in isolation, running back and forth to the hospital every other day at best? No, none really. Well there is the gum pain, the side pain, the knee pain, the "I feel terrible" mornings with no appetite, followed by the energetic afternoons and wanting to eat everything in sight late evenings. But really, no. "Any pets in the home?" No.
Many, many, many more questions. Many of the same ones over and over by different doctors. My favorite: "Any history of anything in the family?" Anything? "You know, anything." (raised eyebrows) "Cancer?" Yes. "Heart disease?" Yes. "Diabetes?" Some. Does any of this relate to Aplastic Anemia? "Oh no, I wasn't asking in relation to that." I was ready for, "What's her sign?"
There were no beds available, and so we waited. Various people came by, told us different, conflicting things about what would happen next. We were at least finally able to get Kinsey's favorite clinic bed and start reading to her. Then they came to tell us we needed to move to "the other side." We said, "Good. A room is finally ready?" No, they told us, it's just that they were closing and we needed to go over to urgent care and wait there. Audrey's reserve which lasted longer than mine was gone by then, too. We both started crying again as we put Kinsey's mask back on and packed up our few things to move again and wait some more. One of the doctors we've dealt with a lot saw us and said, "What's wrong?" He led us into a private exam room and we let him have it. He almost cried with us. Tossing us a bone, he let us go home for a few hours, requesting that we call to see if a room was ready.
At home, we started to talk and sort out the facts. A fungal infection didn't make sense to us. And she hadn't had a fever all day. She seemed to feel pretty well considering, and they hadn't even taken a fungal blood culture. None of her regular blood cultures showed fungus. We got her back to the hospital a little after ten and expressed our concerns to the nurse and a couple of Residents. They said they needed to start the heavy-duty fungal antibiotic right away. We said, "No, not yet." We said we wanted her regular doctor consulted first and again questioned the decision. They called him and he okayed waiting until morning. No fever all night. But then a low grade one again in the morning. He called in infectious disease specialists who said there was no indication of a fungal infection and that she really should be on Penicillin. No reason she couldn't go home, but it wasn't their decision.
More hours passed and sometime after 5 p.m. her primary doctor and the Fellow whose shoulder we'd cried on came in. They said the primary reason the other doctor had recommended Kinsey be admitted and put on this drug was that she behaved as if she felt so bad. The doctor had even said to her primary, "She even let me examine her." So since she didn't kick or hit her or suggest that she be fired (as she did last time), the doctor assumed she was "lethargic" for her. Kinsey sat up at this point in the explanation and said, "Dr. Frost is wrong. I'm not that sick." She was tossing aluminum foil balls in the air and laughing loudly. The doctors agreed with her and with the infectious disease specialists and with us. They said she could come home.
Tonight, we're home and we've had another welcome home pizza party. Kinsey has no fever and seems to feel pretty good. Life could be much worse I realize and in comparison to what might have been and what could be, this has not really been Hell. We have gotten to close to glimpses of what that place would look and feel like. I told the doctor yesterday, "If you tell us we have to go to Hell and take Kinsey with us. And you tell us we have to stay for quite a while but it'll make her well. We're ready. Our bags are packed. But don't put her through hell for nothing." Audrey said, "Our child is not a guinea pig and we don't appreciate the diagnosis du jour approach." My dear friend and co-worker Helen Grandjean showed up in the middle of our crying jag, bringing us information about St. Jude's Hospital. We are considering all our options and I am so appreciative of the support I am getting from work about those possibilities as well as my current inability to be consistent or reliable.
One
bit of good news: my nephew Sean, along with several other family members,
had the Kinsey Morrison fund raiser today at FORD in Louisville and raised
more than $3000! THANK YOU SEAN!
One
bit of bad news: When we arrived home tonight, Ann announced Jillian has
a fever. It's risen a bit in the last few hours and she just took
Tylenol and went to bed. More later. I'm going to bed in preparation for
my 8 a.m. root canal.
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