Sophie's World

10:30 PM: Sophie and I decided to come home today. For one thing, we were out of clothes, and mom sent us home with laundry (she just has a small washing machine, so we can handle more stuff for her). It was hard to leave. Depending on how Nannie does, we may head back up fairly soon, and I can just come down to get Elisabeth on Saturday and go back up. I haven't talked to Elisabeth today, but I did hear a couple of times from Randall. They have been very busy on their trip, and he sounds pretty wiped out, but it sounds like it's worth it. Tomorrow will be another very long day for him, but we have plans to talk at 5:00 (11:00 his time).

On my way back from Virginia, I decided to stop by to visit our friends Melissa and D'Angelos (T'yanna's parents). I hadn't had a chance to speak with them directly since the funeral. Melissa wasn't there, but I had a nice talk with D. He told me he had done a web search for T'yanna's name and found Sophie's web site. He very much appreciates everyone's prayers and support. Things are still very hard for them, but they're doing pretty well. I let him know when we had Sophie signed up for dance class, and he said they would try to put Madison in the same class. I would love to have the opportunity to see them every week.

I'll continue to check in as often as I can.

Posted by Susan at 10:35 PM | Permalink

8:00 PM: I'm back up at Mom's today. Sophie and I drove up last night after I spent most of the day taking care of a bunch of things at home. I did lots of laundry for mom, ordered and picked up medicine for Sophie, took care of errands in town, and visited Achilles at the vet. I decided to leave him there so that our cat sitter won't have to worry about feeding him special food. I also talked with and visited several people from church while I was home, and that helped me a lot.

I talked to Randall for a long time today. He shared lots of details about what they are doing and how it is affecting him. Given the heat wave we're experiencing here on the east coast, it was weird to hear him talk about Johannesburg having the coldest day on record for the last 8 years, and that it snowed there for the first time in something like 25 years. A little snow sounds pretty godo to me right about now. Tomorrow, he'll spend most of the day at game preserve, and he'll get a chance to rest, physically and emotionally.

I haven't really talked much about how Nannie is doing, because up until a couple of days ago, she was reading these updates, and I didn't want to be too negative about her health situation. But you could probably tell from my descriptions that she is not doing well. The primary issue right now is that she has multiple myeloma that wasn't responding to treatment, so she went on hospice about a month ago. In the last week or so, her blood levels have dropped dramatically, and it has really affected her ability to function. When I first arrived on Friday, she was still able to slowly make her way into the living room from her bedroom and eat meals in her chair. I think it was on Monday that it seemed to wear her out too much to come into the living room, so we put a comfortable chair in her room and she took her meals in that chair. On Tuesday, she really couldn't handle getting from her bed to the chair, so we let her eat meals in bed. The hospice nurse came that day and said she didn't think Nannie had enough strength to use the potty chair next to her bed either, so Mom started putting diapers on her. That was the day I went home, and it was really hard to leave. I'm glad I came back. She's been doing about the same. She is still able to eat, although not much sounds interesting to her. Sometimes she forgets how to take medicine, and other times she does just fine. But for the most part, she's pretty alert (which is pretty amazing, considering that she also has dementia). Mom is sleeping in a recliner in the room with Nannie, just in case she tries to get up. We don't want her to fall. It's probably a matter of days now, so we're just hanging out and spending time together, taking things day by day.

Posted by Susan at 07:57 PM | Permalink | Comments (6)

8:30 PM: Still hanging in here. Nannie had a pretty rough night and seemed a lot worse today. She doesn't wake up unless we do something to her (feed her, give her medicine, change diaper, etc.). The hospice nurse visited again today and said her abdomen didn't sound good. It sounds like she probably has some internal bleeding, and she's only urinated since Tuesday. The nurse suggested we give her morphine (orally, and it's a pretty small dose) regularly twice a day or more often if she complains of her stomach hurting. The nurse also warned us that there's a possibility she may vomit blood and suggested we have some dark towels on hand (which I had to go buy, because Nannie likes pastels!). We hope that won't happen, but we were glad to have a warning so we wouldn't be upset or surprised if it does.

Unless things get a lot worse overnight or in the morning, I will head down to NC to pick up Elisabeth from the airport and bring her back up here. Her flight arrives late afternoon, but we might be back up here around bedtime. When I talked to Karin last night, she said Elisabeth was crying yesterday because she didn't want to go home. Of course, she cried before she left because she didn't want to leave home. Go figure.

I talked to Randall briefly today, and he had a good day. He said the game preserve was amazing (156 acres), and he saw lots of animals. He also said that the place he was staying has monkeys that just run around, and they were warned not to leave window open or doors unlocked (the monkeys know how to open doorknobs). He saw one apartment where someone ignored that advice, and the monkeys were running in and out and had gotten into all the cabinets. Randall's not fond of monkeys, so he was sure to be careful.

Thanks for all the nice comments on yesterday's post. It's good to know people are supporting us with their thoughts and prayers. And Sylvia, if you're reading this, Nannie has had two slices of the peach pound cake you gave me, and she really seems to enjoy that more than anything else we give her.

Posted by Susan at 08:34 PM | Permalink | Comments (2)

9:34PM Greetings from South Africa! I will quickly try to post an update on my travels here as I "purchased" internet time (what a concept) and don't want to get halfway through the post and have my internet turned off (again, what a concept). There simply is too much to report so I won't even try. South Africa is an amazing and beautiful place with amazing and beautiful people. It is also a place of great pain and struggle but a place of great resilience and great humanity.

As our group of pilgrims experiences more and more of the history, present, and future of South Africa, I grow increasingly aware of the distance between me and my family. Especially under current circumstances (with Nannie's rapid decline), it is very, very difficult to not be with those I love. I have been able to speak with Susan almost every evening, and have spoken with Elisabeth and Sophie about once each in the past week and a half. We will all have lots of catching up to do once I return!

A little bit of news that Susan shared with me last night--being a "single parent" of two children is far more challenging than being a "single parent" of one! Elisabeth and Sophie continue to be typical siblings, which means for some frustrating parenting exercises. I know that Susan is already under a fair amount of emotional stress, so it must be even more challenging to try and manage both girls at once. I hope to get in touch with Susan tonight and maybe she's had a better day of it. We've noticed in the past that when Elisabeth goes away for a while, she comes back with extra attitude. I don't think it's a matter of mom spoiling her too much (although there was probably some of that, right mom?), but a matter of Elisabeth growing ever-so confident because she has traveled by herself and had all these wonderful experiences without mom and dad around. She may also be working through the pain of seeing Nannie slowly fade away. In case you can't tell, they're all on my mind!

Being away from the internet, I haven't had much chance to catch up on e-mail. I did get word that Diego Santiago passed away on 8/2. I'm very, very sad for that family, because I know that Diego fought very long and very hard, and I know that many, many people held him and his family in prayer for a long, long time. There are no easy answers and no easy words for a time like this. It was a special thrill for me to see Diego at Annual Conference this past year and to visit, however briefly, with Cookie (Diego's mom). I will continue to pray for Diego's family during this difficult time.

Well, I haven't talked about South Africa much, have I? Well, aside from the powerful witness of people of faith in this country, two days ago, I got to see two lions "in the wild" and today, got to see penguins wandering around, also "in the wild." Where else on earth can you see lions, rhinos, elephants, hippos, giraffes, AND penguins all in their natural habitats?

I'll share more on this experience in the future, but there is still more to be experienced and I'll need time to process much of what I've seen and heard. Continue to pray for Nannie and continue to pray for our whole family through these next few days.

Posted by Randall at 03:34 PM | Permalink | Comments (1)

5:40 PM: Today at 4:00 PM, Nannie died. The hospice nurse had visited this morning and said it would probably be today. She had become nonresponsive for the most part and had stopped swallowing liquids during the night. She went very calmly in her sleep and wasn't at all distressed when she took her last breath. The girls and I had gone out for the day to visit an old friend of mine and her daughter. We were in the car on our way home when it happened, so the girls didn't have to see it. One of the neighbors took the girls so we could take care of everything. The funeral home is driving away with her now.

Tomorrow morning, we'll pack up and head over to where Nannie grew up. Her sisters still live there, and she wanted to have the funeral there. Although we haven't coordinated the timing with the funeral home over there, we suspect Randall will be home in time to be there with us. I'll go ahead and pack up all our things, and we'll probably head home from there directly instead of coming back here. Although I've been away from work for two weeks, I'm going to try to take some time off after the funeral, because I am emotionally wiped out. I mean I'm functioning just fine (because I have to), but I've hardly felt able to cry yet, and I think it's going to take me some time to recover. I figure I'm already disconnected from work. I might as well stay that way a few days longer.

Thanks, as always for your love and support.

Posted by Susan at 05:41 PM | Permalink | Comments (9)

10:45 AM: Wow, I was amazed to see so many messages from our friends and family when I was finally able to log on to the computer today. Thank you so much for your support, prayers, and kind words. It really means a lot to us.

I'm actually sitting at my desk at work right now, waiting for Randall to arrive. His flight from South Africa to Washington DC was delayed by 2 hours, so he missed his connecting flight to North Carolina. He called moments ago to say that he's rebooked on a flight that arrives around 2:30. That will give us plenty of time to get back up to Virginia for the visitation, which is tonight at 7:00. The service will be at the funeral home (Moody Funeral Home in Stuart, Virginia) tomorrow morning at 11:00, with a graveside service to follow (Nannie will be buried next to her husband in the Woolwine Cemetary).

The girls seem to be doing well. Everyone in the family has commented about how well-behaved they are. I've been a little more irritable than normal (gee, I wonder why!), but I keep telling the girls how much I love them. Elisabeth wasn't sure about going to the funeral, but we've talked about it enough that she seems to be okay with it. Sophie is pretty matter-of-fact about the whole thing. She was talking with my great aunt Alberta yesterday and said "Nannie died. She died in her bed, and then she vanished." Which is true. The girls saw Nannie in her bed and then went next door while we sorted everything out. When they got back, Sophie looked in there and asked, "Where's Nannie?" I've tried to explain it all to them, but I'm sure some of the words I've used just don't make sense, and there aren't always simple words to use instead.

After the service, it sounds like everyone will go to Alberta's house for a meal, and then Randall, and the girls and I will head home. I'm really glad we're getting a chance to reconnect with my family. Quite a few of them keep up with us on the weblog and hadn't seen Sophie since she was 4 months old (if at all), so it's nice to reintroduce the girls to everyone.

Posted by Susan at 10:44 AM | Permalink

8:33 PM We're all home! It's been quite a day--quite a few days, actually. The visitation service was last night and Nannie's funeral was this morning. Because of the newly aggressive security screenings at airports, I was unable to make my connection in Washington, DC, but was able to get a later flight home. Susan picked me up and we had just enough time for a quick bite to eat, a shower, and we were off to the visitation last night. My journey started at around 10:00am Thursday morning in Cape Town (4:00am in the Eastern US), and my flight touched down at Raleigh-Durham at 2:30pm on Friday. It was good to be home, and especially good to be with Susan and the girls as we say goodbye to Nannie. The services were lovely, very nice to see so many people who thought well of Nannie. I know that Susan and the girls have both been through a lot, and even though I may be a walking zombie, I hope that my being here helps a little bit.

Our ride home today was a little challenging, but we can chalk that up to the past few days (and my wacked out sense of time). At the moment, I'm barely able to type and string together some thoughts, but I thought I should at least let everyone know that we made it home and are all beginning to get settled in, although that will undoubtedly take some time. At the least, we can look forward to our "normal" lives.

Thanks to all of you who have expressed support and condolences. It means so much to us to know that you all are out there and thinking of us. We know that our family is prayed for and prayed over by more people than we can ever imagine, and for that we are extremely grateful.

Posted by Randall at 08:33 PM | Permalink | Comments (1)

9:08 PM It seems as if we're slowly recovering from our recent adventures. Today is the first day that I felt close to normal as far as jet-lag goes. Sophie and Elisabeth spent the night last night with Bob and Patti (hi, guys!), which was a nice opportunity for Susan and I to recover our "date night" routine. I think we were both asleep by 9:30 last night! Today has been a day of settling back in, unpacking, doing laundry, taking care of errands, odds, and ends, and finally picking up our cat, Achilles, who has been in the cat hospital since before I left for Africa. The cats have all been out of sorts since we got back (lots of howling and otherwise needy behavior), and he just added his Siamese-voice to that chorus today. It was great having him back, but it certainly is a pain in the you-now-where to have him howling around the house all day!

We kept both girls home with us today (although we waited until late in the morning to pick them up at Bob and Patti's). They were quite a handful, and since the house is still littered with luggage and piles of clean and dirty clothes, it was a bit of a challenge having them dragging out toys in every room! Elisabeth had swim lessons this afternoon, which provided a break from all that, and they both had dance classes this evening. All of a sudden, we're falling into that routine once again.

Posted by Randall at 09:08 PM | Permalink | Comments (1)

9:00 PM: It's been a while since we posted an update, so even though nothing exciting is going on, I thought I'd check in with you all. Randall had a training seminar he had to attend today, and I had a fun day with the girls. I donated blood this morning, which was very satisfying (plus it was here in the community, so I saw lots of friends). Patti (who was also there) said she had started to get worried when we hadn't posted an update in so long and then she drove past the hosue this morning and saw that both cars were gone--she thought maybe we had gone to the hospital with Sophie. Nope, we're doing just fine. The girls and I went to Fayetteville today and saw a movie (Over the Hedge). We also had fun after dinner playing together outside. Randall and I took care of some gardening, and we blew bubbles with a new giant bubble maker. A girl (Hannah) who was visiting next door came over to play with Elisabeth, and they both had a great time. (Elisabeth asked me to talk about that when I did a web update).

I have had a good week taking some time off from work. The highlight was Thursday, when I went to a spa in Fayetteville and got my hair cut, and then got a massage, facial, pedicure, and a manicure, and had makeup done (the makeup part was free). I was there from 1:00-8:00, and I felt very pampered. I can't remember the last time I did something like that--maybe our first anniversary. I'm going to take next week off from work too, and then maybe I'll be ready to go back. It's been very nice to have so much free time.

Sophie is scheduled to go to the clinic on Wednesday--just vincristine in her chest catheter (we don't have to do a spinal tap this month). We're hoping she reacts as well to the steroids this month as she did last month. Elisabeth starts school on Friday. She's been very excited about having new school supplies and a new notebook. We can't wait to see who her teacher will be and who will be in her class. After school is over, we'll head up to mom's for Nannie's memorial service at the church up the road from her house. I realized that I haven't used Nannie's real name here on Sophie's web site. Her name is Estelle Hatcher Barnes, and she was born in April 1920.

Posted by Susan at 09:07 PM | Permalink | Comments (1)

9:26 PM Not a whole lot to report. Both girls seem to be doing well, although it would be hard to tell who is more ready for Elisabeth to return to school--her or her parents! Susan and I had a great date night last night, though, and probably had some of our best conversations in a long time. It's nice when you're no longer in "crisis" mode, how pleasant it is to just share your thoughts and feelings with another person.

Sophie was quite a pill this morning getting ready to go to school. She's typically less-than-thrilled about going on Mondays, since she has been at home all weekend and is not ready to leave us (that's what I think), but she was really, really angry this morning. Apparently (and she never helped us figure this out until it was too late), she wanted to wear her "hair" to school (a clip-on type thing with long, curly, purple-and-white hair). She was beside herself all the way to school and all the way into her school until Susan pointed out that her best friend, Tamar, was already in the classroom. In the blink of an eye, everything was sunshine and roses in Sophie's world. She's such a sociable kid, it's very sweet that she's got a special friend in Tamar (and boy, has Tamar come in handy when it comes to going to school!).

Tonight was one of two "dance nights" in our house, so we had the girls out to dinner and off to dance lessons. Sophie complained about halfway through that her legs were hurting, so she got to sit out the rest of the class. Of course, she had no problem running around the studio for the second hour while Elisabeth was in her class.

We had a bit of a scare tonight. It was dressing change night, so Susan took care of that after bath time. Sophie had insisted on having a piece of candy earlier in the night, and I promised her she could have it--a cherry Jolly Rancher. At some point, she kind of choked and got very, very upset claiming that she couldn't breathe. Her face got all red and splotchy, too. I thought at first that it was the candy, but she spit that out no problem, and continued to have trouble breathing. My next thought was that something happened with the dressing and/or cap change. When we worried once before that we had pushed a clot into her line, the doctors assured us that if we had, Sophie would quickly have trouble breathing, because the clot would go directly to her lung. We called the doctor and he reassured us that it was probably nothing, although it took some time for Sophie' breathing to return to normal. I suspect that she choked on some "candy juice" and it scared her. It's very scary when you lose your breath like that, and it takes some time to recover. By the time she went to bed, though, she was her normal self. All's well that ends well, I suppose.

Elisabeth, however, was quite traumatized by the whole thing. She was crying and asking Susan if Sophie is going to die and the like. When it was all over, I reminded Elisabeth that when she was very young, she swallowed a penny once and how she was very scared and very upset for quite some time afterwards. Then I told her that when I called the nurse to ask whether we needed to do something, the nurse first asked if the penny went all the way down (which it did), and then she said, "It'll come out the other end." When I asked, "But what if it doesn't?" She said, "They always do." Bodily functions are always good for a laugh in our household, so that seemed to cheer Elisabeth up. It's very sweet how concerned she gets about Sophie--it's clear that she loves her very, very much.

Posted by Randall at 09:26 PM | Permalink

9:36 AM Well, we ended up with more "excitement" in our house last night. Sophie never quite went to sleep and at some point (10-ish, I think), she called Susan into her room because she said she was cold. She was shivering and her teeth were chattering. Susan covered her up with a comforter, but that did nothing. Susan checked Sophie's temperature, which was normal. The first thing I thought of was that Sophie was going into shock (who knows if that is what going into shock is like--maybe I was going into shock!). While I was on the phone with Dr. Gold, Susan took Sophie's temp from her other ear, which was over 102. One ear: 97.3, the other ear: 102. Go figure. Dr. Gold suggested we run up to Chapel Hill, which we did.

Normally, Susan takes Sophie and I stay home with Elisabeth. Since we were scared and unsure why Sophie was acting this way, we decided that we would both go to UNC and called Bob and Patti to see if we could bring Elisabeth by there. Got a few things together and we were out the door.

On the way to Chapel Hill, Sophie threw up twice. Unfortunately, we didn't really have anything to throw up into, but we managed to grab the old blanket we have in the trunk and at least we were able to keep most of the vomit off Sophie and her clothes. Still had a fever at the ER. They took blood cultures, ran a urine sample, and administered some IV antibiotics. At about 4:45 this morning, we left the ER. Sophie definitely has another urinary tract infection (never saw that coming), and we're awaiting word on the cultures. Sophie was much, much better by the time we left the ER and chatted half the way home. Of course, we're all going to be sleepy and cranky today, but we're home (for now).

We're quite anxious to hear about the blood cultures because if Sophie has another line infection, then we may need to have the line removed. We've worried about that before and did not need the line removed, but we also know that with each new infection, removing the line makes more and more sense. From a health standpoint, the line may be compromising Sophie and her treatment more than helping it at this point. The question will be, if the line is removed, will another line be put in? We're nine months out from finishing Sophie's treatment. As Susan said last night in the ER, all she thought about in the car on the way up to UNC was that she did not want to do this--any of this--any more. Maybe because we know that the end is in sight and we are more or less "out in the clear," it makes it harder to accept that, for the time being, this is what we have to do and what we have to experience whether we like it or not.

Posted by Randall at 09:36 AM | Permalink | Comments (1)

11:30 AM: I just got a call from Chapel Hill, and her line has grown an infection. It's a gram positive rod, and they suspect a bacteria called bacillus, but they don't know which specific type yet. The doctor said one concern is if it's bacillus cereus (I think that's the right spelling based on the way he pronounced it), which is very resistant to antibiotics. Anyhow, we'll see what strain grows and what it seems to respond to and go from there. We're headed up to Chapel Hill shortly, and they're working on getting a room for us, although it sounds like they're very crowded right now. Sophie seems to feel well, so that helps somewhat. We'll keep you posted as we have more information.

Posted by Susan at 11:36 AM | Permalink | Comments (2)

9:00 PM: Randall's mom just called wanting to know if Sophie had gotten into a room tonight, so I figured I'd better update everyone! Randall called at around 3:30 to say that she got a room on our normal floor. She had doses of two antibiotics by IV at the clinic while they waited for the room to be ready. She's in room 15 on the 5th floor, which is the same room T'yanna was in a couple of times we visited her, so that was sort of bittersweet. Sophie is doing fine, and Randall is totally as exhausted. He got about 3 hours of sleep last night, so he was ready to go to bed when I talked to him a little while ago. Elisabeth and I will get a good night's sleep, and then we'll head up to Chapel Hill to see Sophie. I'll stay up there tomorrow night.

Elisabeth had a great time at the open house for her school and got the teacher she wanted. She's really looking forward to school starting on Friday.

Posted by Susan at 09:03 PM | Permalink | Comments (1)

8:40 PM It is now no longer a question of if, but when Sophie's line will come out. We're still awaiting results from the blood culture, but Dr. Gold has said that the line is just going to have to be removed. It has outlasted its usefulness for her treatment and is now causing more problems than offering benefits. Depending on the type of bacteria that Sophie has swimming around in her bloodstream, the catheter may come out after seven days of IV antibiotics, or it may come out sooner (or it may come out later). We're in a holding pattern (in case that wasn't obvious). I'm guessing that we'll know more by tomorrow at this time.

Since there's not much choice in the matter and the line is going to come out, I think Susan and I are okay with that. We both would look so very forward to no line maintenance (saline and heparin flushes three times a week, cap changes twice a week), no more dressing changes (once a week and always somewhat traumatic) and on the upside, we're looking forward to regular bath time (no more worrying about getting the "tail" or the dressing wet in the tub) and even letting Sophie go swimming for the first time in two years.

Of course, there is the little matter of Sophie's remaining treatments. We're down to the last nine months. Nine more visits to the clinic for either spinal tap or spinal tap with other IV medicines. Sophie will need a peripheral (hand, most likely) IV put in temporarily for that, but they're very good at the clinic and use numbing cream to help with the stick. Sophie's coping mechanism for getting the "dizzy medicine" that they use for sedation is to have her blankie over her head while they administer it. I have already suggested to her that she can do the same thing for the IV stick. We'll see. Tomorrow, the doctors will do a practice run on Susan, so she will be able to tell Sophie (based on her own experience) whether it hurts and if it does hurt, if it hurts a lot. Maybe that'll help.

Meanwhile, Sophie is doing well. No fevers since yesterday afternoon, and that one was less than 100. She is definitely feeling the steroids this week, so it'll be a fun few days in the hospital with her! It was good having Elisabeth and Sophie together today. Although they drive each other crazy sometimes (which drives us crazy), they do love each other very much. I think it was especially good for Elisabeth to see that Sophie is as healthy as she is, she worries so much.

Posted by Randall at 08:39 PM | Permalink | Comments (2)

10:32 AM Doctor Gold sure is a wily fellow. This morning the news is that Sophie's blood culture from yesterday came back positive, meaning the antibiotics are not knocking out the infection (that's not exactly bad news though--read on). His plan now is to remove Sophie's central line (as early as tomorrow morning) and replace it with what is called a PICC line (which, apparently, according to a Google search, stands for "peripherally inserted central catheters"). The PICC line would give the doctors access to Sophie's blood stream, but would be less prone to infection. The good news about this possibility is that Sophie could go home as soon as tomorrow, with a schedule of IV antibiotics that we administer at home. Of course, we had expected to not do line maintenance (which we will still have to do with the PICC line), but we won't have to worry about Sophie getting "stuck" so much. Apparently, a disadvantage of peripheral IVs (in the hand) is that they tend to not last very long, meaning Sophie would need to get stuck many times over the next couple of weeks, moving her IV around, so that she can get all the antibiotics she would need. That does not sound optimal (and it would mean staying in the hospital for that whole time). Of course, Doctor Gold finished this discussion with a caveat--"I'm not promising anything." We'll see what happens. We're getting pretty good at holding on, although it does get old after a while.

Posted by Randall at 10:32 AM | Permalink | Comments (1)

11:00 PM: It's been a really emotional day for me. I don't know why I'm having trouble now, exactly, but this has been much harder time for me than normal. The decision to remove the line so quickly came rather suddenly, and I wasn't totally prepared for it. As Dr. Gold put it, this is a nice compromise between keeping the line and having to do IV sticks, but it's still a change we have to get used to. But this allows us to come home tomorrow (hopefully), which is a good thing, because it's hard ot keep shuttling back and forth. We just want to be together in our house instead of in a small room.

Earlier today, we had heard that her status was as an "add on" for tomorrow, which means no definite time. The nurse said we should cut off food and fluids after midnight tonight. With her on steroids, we were really worried about the prospect of her facing surgery at no particular time on an empty stomach (and I can tell you that the steroids are definitely affecting her this month). When I talked to Randall tonight, he said the surgeon and anesthesiologist had stopped by to talk about how tomorrow would go. She's currently scheduled for 12:30 PM, but they will fit her in earlier if at all possible, and they said she can have clear fluids up until 7:00 AM. Randall plans on setting his alarm for 6:30 to get some juice or a popsicle in her.

Elisabeth's first day of school is tomorrow, and she's very excited. She'll ride the bus and I'll head up to Chapel Hill and will hopefully be there by 10:00. Bob and Patti will pick Elisabeth up from school tomorrow afternoon, since we're not sure how long it will take to get released, but all the doctors seems certain Sophie can come home tomorrow after surgery. It's all a little uncertain (and I'm not a big fan of uncertainty), but we're hanging in there. I know administering antibiotics at home every six hours is going to be no picnic, but we can do it. Dr. Gold said that they wouldn't normally send patients home administering antibiotics that frequently, but he knows we can handle it. Our home health agency will come every two days to draw a blood culture. As long as it stays negative (no bacteria), we can stay at home. But if it comes back positive, we'll have to return to the hospital and administer the rest of the antibiotics by regular IV without the PICC line.

Meanwhile, there's going to be a memorial service at Nannie's church on Saturday. Dr. Gold said it would be okay for us all to go up to Virginia as long as we're home on Sunday for the blood culture. Once Sophie is released though, we'll have to come home first to accept delivery of the IV antibiotics. If we're all feeling up to it, we could potentially head up to Virginia, but we'll have to play that by ear. It will depend on what time we get released and how Sophie is feeling.

Posted by Susan at 11:00 PM | Permalink | Comments (2)

10:37 PM I don't know how to begin this post, there is just so much to unload I doubt I'll be able to summarize it all. We're home--all of us--and we are so very, very thankful for that. Today has been an extremely difficult and emotional day, however.

To summarize briefly, Sophie did get her chest catheter removed today. Since it was a Friday, the operating room was booked solid. We went down at 11:00am, hopeful that this meant an earlier surgery than expected (12:30pm). Fortunately, after complaining all morning about being hungry and being thirsty (she could have no food after midnight and no liquids after 7am), Sophie dealt with the waiting by taking a nap. After about 2-2 1/2 hours waiting to go into the OR, Sophie and Susan were finally escorted in.

Susan and I went to get lunch and wait in Sophie's room. A while later, we got word that Sophie was awake and hysterical--begging for mom and dad. Only one of us was allowed in recovery, so Susan went in. While I was waiting in Sophie's room, the surgeon came in (finally) to say that all went well. While Sophie was raving in the recovery room, the doctors weren't sure whether she was in pain or not, but administered a very powerful pain reliever (Fentanyl) that is supposedly 80-100 times more powerful than morphine. As it turns out, Sophie was just freaked out because we were not there after we promised her we would be there, so it was just a little upsetting that rather than come get us, they went ahead and doped Sophie up even more.

That's not the worst part, though. The worst part came a while later when the PICC team--the people who installed the new catheter--came in to tell us that the line wasn't positioned correctly (it was running up her neck instead of down towards her heart). In order to correct this, we needed to remove the dressing (traumatic enough for Sophie, but all the moreso since this dressing is on her arm, which is already sensitive from all the poking and whatnot, and she's been on steroids all week, and still hasn't eaten much of anything). Once the dressing was removed, the team needed to "powerflush" Sophie's new line with a lot of saline to try and coax it down towards her heart. It was very, very, very upsetting to put Sophie through that. We had assumed that we were past any more trauma and pain in her treatment, but I guess we were mistaken. Once that was taken care of, Sophie got a chest x-ray to make sure that the line responded properly. It did, only now the line was getting too close to her heart (maybe going into her heart, but I might have mis-heard that). So now we needed to remove the dressing once again and slowly pull the line out manually enough to keep it away from her heart. More trauma, more tears, but we got through it. By far, that was the hardest part about today.

After some mix-ups with getting discharged and whether or not we needed to administer the IV antibiotics over 1 hour or 2 hours and how we were going to manage that at home, we finally left UNC some time this evening (I don't even remember what time). Susan went ahead and drove Sophie home while I had a prescription filled for Tylenol with Codeine. Sophie has complained about pain all afternoon, but it's hard to tell whether it is just sensitivity to the new thing in her arm or serious pain. Hopefully we'll hold off on that pain medicine until tomorrow. Sophie doesn't always respond well to some pain medications, so the last thing we want to see is for her to react badly to something that is supposed to help during the night.

I guess we're thankful to be home, after all of that, but it's been a heart-wrenching day and I am absolutely terrified that after all that has gone wrong, something else will happen--the PICC line will stop working or cause Sophie such discomfort that we won't be able to manage at home, or she will develop another fever, or there will be some other as-yet-unforseen problem. We're back to day-by-day, or even hour-by-hour. Although we're home, we're not settled.

Posted by Randall at 10:37 PM | Permalink | Comments (1)

11:45 PM: I'm having trouble going to sleep, so I thought I'd post a quick update for those of you who are checking in over the weekend. Today was a much better day than yesterday. Honestly, yesterday was a really hard day for us. Seeing Sophie screaming (several times) wasn't easy. I kept telling myself it could be so much worse (because she's really fine--we could be facing much worse things), but it was very hard in the moment.

Dealing with the PICC line isn't nearly as easy (or as similar, at least) as we thought it would be. Sophie is very protective of that whole arm, so she really doesn't like us fiddling with it for any reason. She gets very upset when we flush the line with saline (which we have to do before and after we administer the antibiotic). It's room temperature, but she says it's cold and it hurts. We've tried warming it in hot water, which seems to help, but putting the syringe in water (even if we clean it with alcohol) can introduce bacteria. We came up with a way to warm most of the syringe without getting the tip of it in the water, so I think we'll be fine. Interestingly, when we do it at night while she's asleep, it doesn't bother her at all. She wakes up, but she doesn't complain.

For much of the day, she seemed pretty uncomfortable. She was tired, fussy, and not very hungry. She was especially unhappy when we had to unwrap the pressure bandange to make sure everything looked okay under the dressing. After she complained of it hurting, we decided to go ahead and try the tylenol with codeine, and it seemed to make a huge difference. Although she was still protective of the arm, she never complained of it hurting again, and she seemed a lot happier. She rode her tricyle (one-handed) outside tonight and went to bed easily. It was really nice to see her laughing and the girls playing together so nicely.

Obviously, we weren't able to make it up to Virginia for my grandmother's memorial service. Randall talked to mom today, and she told him that it went very well. Lots of people shared their memories of her. She was very loved. I really wish we could have heard every word, but it just wasn't possible.

Tomorrow after church, our home health nurse (Amy) is coming to draw a blood culture. She will also help us with Sophie's first bath, and she'll take a look at the PICC site to help us decide whether we need to change the dressing (there was a little dried blood under the dressing when we looked at it today, but we're not sure whether it's enough to justify changing it).

Thanks, as always, for your comments, thoughts, and prayers. It's nice to hear from everyone.

Posted by Susan at 11:43 PM | Permalink

6:33 PM We have kept Sophie home from dance class tonight, which is where Elisabeth and Susan are at the moment. Sophie is watching the DVD "Barbie Diaries," so she's quiet. I thought this would be a calm time to post an update. We're slowly adjusting to the new set-up.

As much as Saturday was a blessedly calm day for us as a family, Sunday was a challenge. Amy, our home health care nurse, came to do a blood draw, help with the bath and various other things. We had been told by a nurse in the hospital that it was standard protocol to check the PICC dressing for signs of bleeding. If there is bleeding, it can become a source of infection and probably should be cleaned, sterilized, and a new dressing put in place. Of course, there was some bleeding, so we decided to change the dressing. Needless to say, Sophie screamed bloody murder (not an exaggeration) throughout the whole ordeal, with Susan and me holding her down while Amy worked on the site. It was very upsetting for all of us. The worst part was that because the site is still new, it hasn't completely healed yet, which meant that as soon as it was cleaned (no small feat), it started bleeding again. There really was not much we could do other than put a new dressing down over the small amount of blood that came out. Later, Susan talked to a nurse at UNC-Children's Hospital and got the impression that as long as the site does not continue to bleed under the dressing (such that the air-tight seal around the site is broken), it would be better to leave it alone and let it heal, otherwise we'd be changing the dressing every day, a process that would undoubtedly bring even more and more blood and more and more chance of infection and less and less opportunity for healing. Augh! Way too much information, but it was very traumatic.

Also traumatic was the process of removing the small dressing that remained on the site of Sophie's chest catheter. She was not at all interested in bathing without a bib, so we indulged that request. After the bath, we took the dressing off (more screaming bloody murder). The site looked bigger than I expected it, but there was no noticeable bleeding there. At the moment, it has a Scooby Doo band-aid over it, which is a major step forward in my book. Granted, there will be no touching the Scooby Doo band-aid if Sophie has her way, but we need to check it out every now and then. Sophie still has the EKG (?) leads stuck to her chest and the band-aid from the peripheral (hand) IV that was used during surgery on Friday. The poor child is just so overly sensitive to anything touching her skin, particularly the number of places where she's been stuck over the past few days.

Sophie did not go to Countryside today, although we offered to take her just for a visit. She's very protective of her arm and I cannot imagine how she would function in a group environment, let alone trying to play.

We get glimpses of Sophie as her normal self--she just walked in carrying a toy of Elisabeth's that plays snippets of music from "Barbie Diaries," and said, "Hey Dad! Want to hear some totally hot music?" Unfortunately, she did not get a nap today, and we are paying the price this evening. Everything is a major tragedy and she is as impatient as, well, as impatient as her parents are most of the time lately!

Elisabeth came home from school today very excited because she got a trophy for taking piano lessons last school year. When I asked her if that meant she was interested in taking lessons again this year, she nodded her head. Then, since we're reinstituting our no-TV during the week rule (halfheartedly, especially with Sophie home all the time), Elisabeth went straight to the computer to play some learning games. I'm glad she likes school as much as she does!

Posted by Randall at 06:33 PM | Permalink | Comments (2)

8:58 PM This is my second attempt at a post (the previous one crashed), so I'll be quick to make sure I say what needs to be said. We're all doing well. Sophie returned to Countryside today for the first time. She went late after her morning antibiotic and we picked her up early this afternoon to get her medicated. She reluctantly went to Countryside for a visit yesterday afternoon, but quickly fell right in among her friends and teachers. Today on the way home she said, "it's not as much fun when you're by yourself." I take that to mean that she had a good time with her friends today. Every day she grows more and more comfortable with the PICC line. Overall, I think she's recovering from the trauma of last week. Yesterday she allowed me to take off the Scooby Doo band-aid over the site of her chest catheter, and she replaced it with a Barbie band-aid all by herself. She also let nurse Amy take a look at the dressing on her arm, and she lost two of the EKG (?) leads from the surgery, one getting dressed and one in the bathtub.

One exciting thing that happened yesterday was that after dinner we were all in the yard playing and getting some fresh air. Sophie and Elisabeth were chasing bubbles that we were blowing and unfortunately Elisabeth stepped into a fire ant mound (she was wearing flip-flops). That put an end to our fun, but she recovered pretty quickly and seems no worse for the wear today. I got bit trying to get some of the ants off her feet, but nothing major. There was an article in the Dunn paper just yesterday about a gentleman from our community who nearly died from an allergic reaction to fire ant bites/stings.

Susan has been getting supportive gifts and phone calls from the folks at work. We got two gift baskets from Southern Season today--the girls practically devoured the contents of their basket this afternoon. It's nice to know that her co-workers are thinking of us. I worry that this "down time" that Susan had planned has not been as restful as she had hoped, between Nannie's death and Sophie's hospitalization. Our lives are not our own, not even our "down time," I guess.

Posted by Randall at 08:57 PM | Permalink

8:48 PM A mostly calm day in Sophie's world today. We overslept this morning, so Elisabeth missed the bus--we didn't make it through one whole week before she missed the bus (oh well). Given the fact that Sophie is getting an antibiotic treatment in the middle of the night (2-3am, usually, which lasts an hour, so at 3-4am, she needs to get "unhooked"), I'm surprised we made it until Thursday before we missed the bus!

Home health came today for another blood culture. No word on the one from Tuesday, but the one from Sunday was still negative. That's good news. Sophie let Amy take her sock off (a cut-off sock we use to cover the dressing) and look closely at the site. It doesn't look like there's any fresh blood under there, so we're okay. We're not looking forward to cleaning the site at the next dressing change. In fact, Susan had the bright idea today of driving up to the clinic in order to show the site to the team up there and have them help with the dressing change. It can't hurt to have an extra pair of hands (and eyes) to help with all that.

With tropical storm Ernesto coming through here tomorrow, it may make for rough travels. Hopefully that won't be the case. Elisabeth's school is on two-hour delay tomorrow, but that feels over-cautious. I guess after Katrina, nobody wants to be caught looking unprepared.

Sophie was very, VERY reluctant to go to Countryside today. She threw a category 4 temper tantrum in the living room when it was time to go. Eventually, I got her calmed down enough to go, but it took a long time once we got there to get her settled. As I pointed out to Susan over lunch, while Elisabeth at this age had a pretty reliable, structured schedule, Sophie's schedule changes from day to day and week to week. It's no wonder she thinks that she has some input on these things! We're hoping that once we get through the antibiotics we'll manage to keep her bug-free for the next several months and will get back into a regular schedule and routine. That'll help all of us, I'm sure.

Posted by Randall at 08:48 PM | Permalink | Comments (1)