Updates on Laurel: April 2003

We're off to Laurel's surgery in a few minutes - wish us luck! I'll let you know how it went.

It's been a long day! 

We finally got Laurel settled about 1:30 AM last night and she slept until about 6:30 AM. She's been overall better today, but it seems to kind of hit her in waves and she's still having some periods where she's really miserable. We decided to keep her home from the babysitter's again today - Bob's with her now and I'm heading home in about 10 minutes. Tomorrow's her regular day to be home with Bob and get therapy, so we will have to play it by ear about the therapy but at least we're already planning for her to be home and hopefully by Friday she'll be back up to going to the sitter's. This has sure been rougher than we'd been led to expect it would be!

Laurel is running a fever of 101.4. She had the Tylenol with codeine about midnight, and woke up screaming about 5:30 AM. And I'd forgotten to mention this, but she's been on Keflex since the surgery too. I got off the phone with her ped a little while ago (after trying to call Peds Surgery like I'd been told and being told that they'd paged the on-call doc three times and no response, would I like them to take my name and number and someone would get back to me?) and they want to see her in their office this morning. I got an appt for 8:30. The ped said she thought since Laurel is on the Keflex that it's just a coincidence and she has a virus, but then again sometimes pneumonia sets in after anesthesia. Her site is red and swollen (which I told the doc) and I personally think that we have somehow caused the very thing we were trying to avoid. Knowing how fast it progressed before I'm nervous about even waiting till 8:30. Actually, even while I'm writing this, we just pulled the gauze off from around the site (because it was soaked) and it's not only hard and red but it's pulled back so far that you can see the valve on the inside and it looks like it's going to come out at any minute. I just called the doc again. And just got off the phone. She told us to go to the ER. She said it's *probably* OK but better to have it checked out immediately. So one of us will post an update later. Please keep her in your prayers, we're very scared!

Laurel was admitted to the hospital for IV antibiotics and observation. Her fever came down and the site started looking better (in terms of redness/swelling) pretty quickly, and Bob (who was there when the docs came by) says they didn't seem very concerned about the infection aspect. However, they were concerned about how badly the stoma (opening) has pulled away from the tube. They are apparently considering removing the tube altogether for a day or two and giving her everything by IV to give the stoma a chance to shrink. Poor baby, she'll love that - when she's been on an IV in the past, it's seemed to me that's she's gotten hungry anyway (and would you believe, her 11 AM feeding didn't show up until *4:15* today? So happy this is one of the 100 best hospitals in the country...). Not to mention the pain of having it replaced AGAIN. Waaah (on all our behalves). Her usual surgeon has still not been to see her and there was apparently some disagreement among the ones who did so I'm not completely sure what will happen, but if they go that route of course she will be in the hospital for at least a couple more days.

Although Bob offered to stay with her tonight, and I would have been more than happy to take him up on it since I'm falling-down tired, we didn't get a private room and the other kid's mom is staying with him so I'm just home to get my things and about to head back down there. Thanks so much for your thoughts and prayers, will update again when I can (probably some time tomorrow).

[Posted by Bob] One more thing to add to these updates. For pain on Tuesday, the surgeon prescribed Tylenol with codeine. Which worked fine - except that no one bothered to tell us that it causes constipation. And Laurel has a history of constipation. We typically give her Miralax most days depending on how much she's pooped in the past 24 hours. Except that, as most of may remember, Laurel's been actually having diarrhea since the last round of antibiotics for the cellulitis that started all of this in February. Pooping 3-4 times a day most days. So, we haven't been giving her any Miralax for the past several weeks. Of course, if someone had told us that Tylenol with codeine causes constipation, we would have given her a large dose of Miralax to head that off. Obviously, we didn't. Until last night and today. But it hasn't worked yet (at least by the last I talked to Rochelle - about an hour ago). So, on top of Laurel's other discomforts, she hasn't pooped since Monday. If she were home, we'd be giving her Babylax at this point. So, I told Rochelle to get ahold of the resident on-duty on the floor tonight and get some Babylax so that at least Laurel can be comfortable down there - which would help her feeding tube problems, I would think, because when she's constipated she grunts a lot and presses down and that exerts pressure on her tummy and her button and she also inhales more air as a result, also adding to the pressure. Argh.

Sorry for the rant, I've been up too long today. Time to get some sleep. I do think Laurel feels a bit better today but I'm dubious that the ostomy bag solution will actually work. I fully expect we'll go with plan B tomorrow (balloon button for now to allow the stoma to shrink and then replace that with her regular button when that happens). We'll keep you all up to date as we can and thanks so much for all your positive thoughts. 

Another update on Laurel. (I'm at work for a couple of hours right now.) It looks like Laurel is going to be in the hospital at least through Sunday morning (whee, at least two more fun-filled nights at the hospital). They removed the ostomy bag to have a look-see today while her surgeon was there. He thinks it might be working somewhat to help close the stoma (we're not as sure) and wants to keep it that way for another day, then assess again tomorrow. It sounds likely in any case they'll send her home before she's "all better," which is good from a not-spending-the-rest-of-our-lives-in-the-hospital standpoint but I'm not too psyched about bringing her home with all that leaking still going on (the ostomy bag is *not* working very well at containing the leakage, either). I *was* relieved to see that the site no longer looks red or swollen, so at least the antibiotics are doing their job.

Meanwhile, she's still completely miserable! I did give her a Babylax last night. They didn't have any at the hospital, but after they tried a glycerin suppository and it didn't work (not a surprise, they haven't worked since she was teeny) I told the nurse I had one in Laurel's diaper bag and she told me to go ahead and give it to her. An hour and five poops later, she fell asleep (about 1:30 AM). But then woke up screaming at 3:30 AM. And has been crying pretty much every time the pain meds wear off (we've been having to use both Tylenol and Motrin, although we're trying to avoid the Tylenol with codeine now that we've learned about the constipation side effect). To top everything else off, seems she's come down with a cold! She's been hoarse since the surgery, which we put down to the anesthesia/intubation, but yesterday she started to cough and now she's sneezing out yellow gunk. (Just to be on the safe side, they took a chest x-ray today to make sure the cough isn't anything more evil.) We can't tell if she's crying because of the g-tube problem or the cold or even some third reason. For some reason she cries when we try to straighten her legs out. She also has had her arm taped to a board since yesterday morning in order to keep the IV in place and I can tell that's bothering her too (not that it would take a rocket scientist to figure that one out). She's only spent maybe an hour total today that she was awake and not crying (that's a tribute both to how much she's crying and how much she's sleeping). It's hard to believe that just 4 days ago we took her to see the preschool she's going to in the fall and she seemed interested and happy. This has been the longest four days we've spent in a long time. Thanks again for your good thoughts and I hope that I can at least report soon that she's happier!

I think last night was *the* longest night (well, except maybe for the night we took Laurel to the ER for cellulitis) I can ever remember spending with her. I can't remember another time that she didn't ever sleep for at least a 2-3 hour stretch. Last night she slept from about 4:30-5:30 and I also brought her into the cot with me and managed to keep her quiet (although not really asleep) from about 6:00-7:00. Otherwise, she was awake and crying every 20-30 minutes, all night long. I *think* a lot of it is the cold, she has a horrible cough that I think is really hurting her throat, but it also seems like it still might be sore around her g-tube site (although that might just be the ostomy bag glue or something, it's so hard to tell what's really going on) and of course, there's still that arm-taped-to-a-board thing. I asked the nurse if we could get some cough medicine, and she said I had to wait until the pediatric surgeons made their rounds (since that's the department whose care she's under). So when they did, I started the topic by saying "She has a really horrible cough," and one of them said, "Oh yeah, well, we had a chest x-ray done and I haven't looked at it but I've heard that it was clear." I paused to see if he was going to say anything else on the subject and he didn't, so I ventured, "Do you think we could give her something for the cough?" At which point they looked at me like, what a totally novel idea. I realize they're surgeons and they probably don't get hit up for cough medicine very often, but geez, you'd think one of them might have a kid. Or at least have had a cold before. Anyway, she did finally get some Robitussin, and when I talked to Bob (I'm home - I had to get a nap and a shower somewhere that didn't smell like barf - Laurel's little roomie has a stomach bug and we're just praying it's a variety we've already had) he said she was doing a bit better. The surgeons are still sounding optimistic about sending her home tomorrow, although they hadn't yet taken the ostomy bag off to have a look. There seemed to be less leakage, though.

I'm about to take off again - hopefully by the next time I post we'll all be home!

We're home! (sorry, a bit gross)

Just a (hopefully for once) quick update! I'm SO happy to say they didn't give me any trouble at all with getting a follow-up appointment for next Monday. Also in good news, so far the leakage (both into the bag and out of it) has not been too bad, so we're still hopeful that plan is working. On the other hand, Laurel's still a miserable kiddo! She only slept for about 2 hours last night (at least this time, I could let Bob deal with a lot of that) and just keeps catnapping for half an hour here and there. I *think* the worst problems are the cold and the gas pains she's having (the Keflex has clearly caught up with her, she's back to having diarrhea too). Although I think the ostomy bag is also bothering her. She just doesn't want to be moved. Bob thinks he's getting her cold, too! So things are still not fun around here, although at least it's nothing really scary at this point, just something to slog through.

When I said yesterday that I thought the biggest problems were the cold and the gas the Keflex was giving her, boy, was I wrong! Last night the ostomy bag was starting to come off and leak and we decided to take it off and start over rather than trying to reglue it. Well, we got it off and her poor tummy was covered with red welts! I had noticed a few red dots when it was taken off on Sunday and the nurse had kind of blown it off, but now there were lots of dots and ridges and lumps as well. She really hadn't leaked that much over the day (an ounce or so) and we just couldn't stand the idea of putting the bag back on over those welts and we put some hydrocortisone cream on them instead. And she has just been a whole different kid today! We kept her home from the babysitter today because we wanted to keep an eye on things, but the leaking really isn't bad at all (we actually had worse for a while after her previous button change) and even though she still doesn't feel great, she is SO much calmer and happier! I feel so relieved - it's been over a week now since the last time she was awake for any length of time without crying. I think we'll probably even take her back to the babysitter tomorrow (a good thing for me because I'm completely out of sick leave). I feel a bit guilty for not following "doctor's orders" but I can't do that to her again. I think it might actually heal better with the bag off if she's not crying all the time - most of yesterday's leakage happened while she was crying. Anyway, a big "phew" from here and hopefully we'll all get some sleep tonight!

Disregard the previous post - the part about the happier girl who isn't leaking much, anyway. I just spent the last fun-filled hour of my life watching her writhe while most of her feeding and what looked like pretty much all of her antibiotic and cold meds ran back out (and then cleaning up afterwards). I have no freaking idea what to do. Her skin's looking better but it's only back to about where it was Sunday, so I'm sure if we put the bag back on we'll be back to screaming girl in no time. I figure this does mean I'd better stay home with her tomorrow (later today) and work on the weekend. I'm SOOOO tired, and I could just cry....

It's been a roller coaster ride (you know, it's funny that I use that phrase since I actually *like* roller coasters, but I guess I can't think of any other up-and-down cliches, LOL) the last couple of days. But for now Laurel's doing better and planned to go to the babysitter's today. She was leaking pretty badly on Wednesday and on Thursday, we called the surgeon's nurse and fessed up. She talked to the surgeon and to our relief, we didn't get beaten up over taking the ostomy bag off. They just told us to go back to using gauze (we'd been putting gauze around it for a while after we took the bag off but then stopped because it didn't take long for the gauze to smell funky and we were worried it was making things worse) and bring her in today if she was doing badly. But except for some leakage last night when she was crying (gas pain, I think) she's been doing pretty well. We've been (temporarily of course!) feeding her a little less because most of the leakage was happening at the ends of the feedings when her stomach was really full. She's been sleeping better although she was up for about 45 min last night with gas pain - but the night before that she slept through and at least she's not doing the waking up every 20 minutes thing anymore. We still have the follow-up appt on Monday and I'll definitely let everyone know how it goes!

So, Laurel's follow-up visit to the surgeon was today. First off, by Saturday night the leaking had gotten so bad that we broke down and put the ostomy bag back on (her skin was looking OK again by then). We were so nervous about that but we were really getting worried about the amount of food and medicine she was getting. Anyway, she did all right with it, and everyone staying in the same clothes all day was such a novel concept. There was very little leakage with the bag on yesterday, too, but then there were a couple of ounces into the bag this morning. Anyway, the doctor peeled the bag partway off to have a look at the site, and even though we felt like the leakage had been so variable it was hard to tell if any progress had been made, he felt the site looked a lot better. His feeling was that we could just keep with the ostomy bag for awhile as long as it wasn't leaking - I don't think he got at first that my concern was that the reason her skin was irritated was not the leakage but the glue. Anyway, there was a fair amount of discussion and the upshot was to leave the bag on again as long as we could and then try really packing it with gauze (more than we'd been using) to try to snug the valve against the hole to keep it from leaking. And if all that fails, we're back to the idea of putting a different type of g-tube in there for a while.

As it happens, we got to the gauze a little sooner than expected. It didn't occur to me when he peeled the bag partway off that they didn't have any glue handy to put it back on! The nurse tried to tape it but we had a catastrophic tape failure when we got home (at least it waited till she was on the changing table). I didn't want to try to deal with the bag single-handedly with her in hysterics, so I just cleaned her up and put the gauze on. So far, so good...but I remember thinking that the last time the bag came off. Her skin was starting to break out just a little in the same place the welts were worst before, so I've put some more hydrocortisone on. We do have more bags we could use if we need to. And I guess we'll just see. I'm trying (not real successfully) not to worry about our plans to go to Pittsburgh for the weekend to see my mom (leaving Thursday night).

The good news is, she's mostly over her cold, and although Bob and I both had days where we felt like we were coming down with it, we didn't. So that's something, anyway. :-)

Laurel has been quite the character lately at her last feeding of the night. She's been fussing at it for a while but Sunday night she was totally pitching a fit so we really spent some time trying to figure out what the problem was. Turned out the problem was that I wasn't Daddy! We ended up having quite a discussion over the whole thing (Bob feeding her then really isn't an option because he does the morning feeding and, well, he has to sleep some time! And I don't want to do the morning feeding because I take longer to get ready than he does) and either we got through to her or wore her out, because she wasn't happy after that but she settled down. Monday night she actually got her wish because Bob took the last feeding because I had to get up at 5 AM to drive to Richmond for a meeting (bleah). So last night, we had more fussing, another discussion, and she finally settled down when I sang to her. Then I had to call my mom to discuss plans for the weekend and that got her going again - until I started talking about *her* and then that was OK, LOL! But eventually we *did* have to discuss something else and she just started howling. At that point I ignored her and right toward the end she got the picture and shut up (My mom: "Did you drown her or what?").

Anyway, so she's being kind of a 2-year-old but at least we've found another channel besides the all-miserable, all-the-time channel. The leakage has been pretty minor the last couple of days and she even had her Feldenkrais therapy yesterday and that went well. Her skin's healed again so if we do have to put the bag back on I'd feel OK about doing it for a little while, but so far we haven't felt like we needed to. And so at this point we're still on to see my mom (who, by the way, is 77 today. And dang, I forgot to say Happy Birthday last night!).

We got back from Pittsburgh late last night. Leaking-wise, Laurel did pretty well, although the gauze came off Saturday night and she woke up pretty wet on Sunday so we're not as close to getting the gauze off as I was starting to hope. But we've been able to increase her feeding rate (from less than half of normal to a little less than 3/4 of normal). She's been fussy, though, and it seems like she's teething again (most of her remaining teeth look like they're close, so I hope this is the one that pushes some through!) and either that she's got a little cold or some allergies. We took her to the zoo on Saturday but it wasn't a howling success (or maybe it was - it was successful at producing howling, anyway :-D). We did get her to calm down long enough to enjoy the aquarium (usually her favorite part anyway - I think she likes the fish because they're bright and shiny and close and easy for her to see).

Actually, though, our biggest stress-producer was trying to get my mom to eat something. She recently went on medication for her high blood pressure and she said it was making her nauseous and she felt too bad to go to dinner with us on Friday. Then Saturday she didn't take it and she still felt lousy. At this point she started to blame stress over this spot on her nose that her doc told her is probably skin cancer. Never mind that the doc told her that 3-4 weeks ago and she still hasn't made the dermatologist appt (she said that the upset was because she was dreading her appt with the GP next Thursday, which is a follow-up for the blood pressure medicine). She stayed nauseous the whole time we were there but Bob and I got to wondering how much of that was because she hadn't eaten much except a couple of pieces of toast and some tea. We did get her to eat some leftover (from Bob's dinner) cashew chicken and some jello Saturday night and a little chicken noodle soup we bought her on Sunday. We went out and bought her a bunch more soup before we left town but I felt horrible about having to leave. If it really *is* stress over her nose, this could drag on for weeks! I'm also worried about her because she's stopped getting her hair done, which sounds weird but it was kind of a sign she still cared about something (she has gotten her hair done once a week as long as I can remember). I know, I haven't said *I'm* worried about her nose - I guess I'm feeling like *that's* probably treatable and I'm actually more worried about her mental state. Since Dad died (in 1999) she's seemed like she's been slowly spiraling downward. I hate having her be so far away but she refuses to move and we can't move. Agh, I wish there was something I can do, but she won't discuss anything. I'm feeling pretty depressed myself about the whole thing.

Oh well, I have to go because Laurel has one more follow-up appt at the surgeon's in about 45 minutes (hopefully this will be pretty routine, since like I said the leakage hasn't been too bad - definitely better than this time last week!). Sorry to dump on you guys - I'm feeling very stressed about this right now, even though I know there's not a dang thing I can do about it.

Laurel's appt went all right. I think the doc was a *little* concerned that there was still some raw-looking skin around her site, because he wanted to see her again in a month. But mostly he seemed to think it was progressing well and said he was optimistic it would finish healing on its own.

Laurel's not getting glasses after all! We just got a second opinion, from that behavioral optometrist we'd been impressed with at her presentation about vision therapy a month ago (we've had to reschedule a couple of times because of Laurel's health problems). She said that a) Laurel's eyes weren't as bad as the prescription we got indicated and b) even the prescription wasn't bad enough to justify getting glasses at Laurel's age. So she is off the hook for now. :-) I'm so glad we got a second opinion! I had been worried about it since reading on the NACD list about how often kids with visual impairment were misdiagnosed as needing glasses. We REALLY liked this doctor, she took the time to talk with us and seemed to genuinely *care* more than I think any of Laurel's docs except her pediatrician. She also gave us a prescription for a different ointment we can use to clear up the nastiness around Laurel's right eye (her eyelid's often scaly, red and her eye tends to be gunky - the doc told us that she probably has some blockage in the tear duct as well). Laurel was allergic to the erythromycin ointment that her first ophthalmologist had given us and the doc today was the first one who came up with an alternative. She also told us we should put warm compresses on Laurel's eye (oh, now THAT sounds like fun - not). She said that Laurel's eyes move purposefully about 60% of the time (that probably sounds horrible, but it's a lot better than she used to do), and that although she often doesn't use both eyes together, she *does* use both eyes, which is good because she's not so likely to lose vision in either one and we can work on the together part. She made some recommendations for working with Laurel visually, and she was really complimentary about the work we've been doing with Laurel. She wants to see her again in about 6 months.

OK, back to work for me because I have to leave again for her Feldenkrais therapy in an hour!

Bob just called to say Laurel laughed again, finally! (And naturally, I missed it again too!) But I'm so happy she's still working on it. This is the first time since that first one back in November. She's been really vocal lately, too - and our hope for her eventually talking shot up after we saw this kid with CP at the preschool she'll be going to. He's leaving for kindergarten next fall (too bad, I think they have a lot in common) and he's kind of hard to understand but he knew all the answers to the questions and the words to the songs. And Laurel's ST (who works at the school) says that he just started talking last year! And that she also thinks they have a lot in common.

On the downside, she's got this nasty dry hacking cough that's been waking her up at night (we're not sure if it's a cold or allergies - clues anyone? No other real symptoms except a bit of a stuffy nose) and she's been pretty miserable - we're back to the gas pains/constipation routine and she's been teething. But Bob says she's in a good mood today. :-)