Maria Rose

It’s been more than 2 months since my hysterectomy and I’m finally starting to feel humanish, so perhaps I’ll keep this blog up a little more often…

This week we took Maria to get her granulated skin around her G-tube button burned again. The doc gave us some of the sticks with silver nitrate on them so we can do it next time….yikes! Not sure if I can do it. I think it would be harder than sticking a tube up Maria’s nose. We’ll see.

After that, we went to get some blood tests for Maria. There’s a great guy, named Buddy-of all things, who took my blood several months ago (27th Ave) and I literally didn’t feel it, so I knew he was the one who I wanted to take Maria’s blood the next time. I called the 27th Ave location and he wasn’t there anymore, so I called the place they said he went and there was no answer, so I called the main Phoenix number, and she called his supervisor from 27th Ave and she told her where he was, so I called there (67th Ave) and he was working that day, so we went there. The tests required 4 vials of blood and it took him only 1 poke to fill all 4 vials. To anyone who hasn’t had trauma with blood tests, this may seem like much ado over nothing, but the last time we had to get blood from Maria, it took 5–yes 5–trips to 4 locations (we went to 27th Ave location twice, before Buddy worked there) just to get one blood test, and I think that one only required 3 vials. Anyway, I’m proud to be a Buddy stalker, and I’d do it again! He is awesome! Maria wasn’t at all traumatized. She even kept a smirk on her face the whole time (well, it began to fade toward the end), but it was like watching an artist at work. With the multiple traumatic experiences we’ve endured to get blood from her (including putting her in shock 3 times in hospitals), you can perhaps understand my giddiness (giddy-ness?).

Maria’s Gtube has been working well for us. She’s been eating and drinking so well that we only have to tube-feed her once a week or so. She’s been starting to bear weight the past few weeks. She’s been taking several steps with Andy, especially as they get close to the front door. She’s been doing pretty well on her bike–pedaling independently, holding the handlebars. Her stander and gait trainer (walker) are getting too small for her to use, so we’re in the long, arduous process of getting her a new stander first, then we’ll work on the gait trainer. Of course, insurance companies are turning the stuff down, so I’m getting 2 docs and a physical therapist to write letters of medical necessity to submit in advance, rather than for the appeal. We’ll see how that goes.

2011 pretty much sucked, so we’re looking forward to a better 2012, and so far things have been going ok. I just have to figure out how to get rid of my pain bs if the surgery didn’t work (jury’s still out on that one.)

Cathy, apparently jealous of all the attention Maria gets, decided to have her own medical crisis this last month. Those of you who know her know she has dealt with chronic abdominal cramping most of her life. She’s been to a bunch of doctors but the only thing that fixed it temporarily was Maria’s birth, which took it away for about five years. Unfortunately it came back a couple of years ago and has been getting steadily worse. So in early December she had a hysterectomy, which wouldn’t have been so bad in and of itself but it was followed by several complications including a perforated bladder. She’s still recovering, but is doing much better lately.

Maria’s getting stronger. She’s doing a little standing and today she took nine steps, which I believe are the first steps she’s taken since the surgery in June! I was supporting about 95% of her weight, but she was taking the steps without any prompting from me. She’s shown a lot more interest in movement, doing some army crawling to get to toys and such, and she’s certainly gotten much happier than she was a couple of months ago.

It’s been a rough six months for all of us, so here’s hoping 2012 is a bit quieter. At least until the world ends in December.

We decided not to go to New Mexico this year since Maria’s grandparents went to San Antonio to see Ida’s oldest daughter, and our cousins were all doing their own thing, and because it’s been a long 6 months and another trip would be too much… I cooked an (expensive) organic turkey the way my mom used to do it — 350 degrees for an hour and then 23 or so more hours at 185 degrees. I used another recipe also, which called for slathering the inside and out with sage butter and filling the cavity with a lemon, carrot, celery stick, onion, and a bay leaf. Easy and delicious. Even though I melted the meat thermometer (wasn’t supposed to be left in the oven), it still turned out good! Pumpkin cheesecake was delicious (used the pumpkin that Maria got on a school field trip) and so was the cranberry sauce. I’d forgotten how easy it is to make and so delicious…nothing like the canned kind! Uncle Andy came over and we had a small, intimate dinner.

A couple weeks prior, Maria’s grandpa and Grandma Ida come over from Albuquerque for a quick visit. As usual, Maria got really sick that weekend that they came. I don’t know if she gets extra excited or what, but it seems like she often gets sick when they’re here. They must think she’s always sick! I drove back to ABQ with them because I had to be in Taos for a class. The moment I stepped into their place, I saw that Manolis left a message (unusual), it was a desperate plea for me to call home because Maria is sick and needs a doctor. I never heard my phone ring, even though it was in my pocket most of the trip. He finally (thank goodness) called Sue and she came over and gave Maria a breathing treatment. She said Maria had a blue tinge to her nail beds–it was pretty serious. I don’t know what happened, see seemed ok when I left. I think her sickness/wellness is highly dependent on her mental state. She didn’t want me to leave this time, and I guess this is he way of manifesting it. In the meantime, I was getting something in my head, I think I had allergies that turned into a sinus infection, so I felt like crap, and it was cold, and I was away from home.

Other than that, I had a good trip. Rode the Railrunner (train from ABQ to SF) for the 1st time, then rode with my friends to Taos where it snowed all evening and night. It was beautiful, but I wasn’t really in the mood since I was worried about Maria and felt like crap.

We have an appt to see an endocronologist to try and stop or slow Maria’s precocious puberty. Just another damn thing to worry about.

Her Gtube button has been doing ok, then all of a sudden, it started granulating, which means the skin around the hole started growing, so we went back to the surgeon and he burned it off with silver nitrate, so it looked really bad for several days because the skin around it was black. It’s ok now. I sure do love it (the button) for giving her medicine–you can even do it when she’s asleep! And it’s good for giving her just a bit more nutrition overnight.

We took Maria to Debbie for her Shin Jin Jyutsu treatment and, like before, a couple days later, Maria’s lungs were clear. We’ve been giving her breathing treatments like crazy for a couple weeks and one session with Debbie and she’s clear again. It’s amazing and I wouldn’t believe it if it didn’t happen to Maria. Now that Maria’s feeling better, I’m having my surgery in 10 days or so (uterus removal). I’m getting ok with it, but still quite nervous. Rosanne (my sis) is coming over before and a bit after to help out. I’m grateful because as good as my husband is, he’s not so good with that kind of stuff…

We took Maria to the zoo for the 1st time ever. It was pretty cool, lots of walking, beautiful weather, rode the train. Not a whole lot for Maria. The animals were either too far away or not moving, so she couldn’t really see them. She seemed to have a good time anyway.

The reality of the g-tube is a little different than the theory. It sticks out a lot more than I expected. It’s obviously sore so we have to be careful until it fully heals, which will take weeks. I’ve given her medicine through it twice. It’s not hard but there are a lot of little steps you have to remember to keep things clean. She’s been good, with me at least, about not pulling at the tubing.

She’s not eating or drinking great, but we didn’t really expect much of a change. Now that she gets most of her nutrition through the tub we can focus on feeding techniques and making meals fun again rather than worrying about volume. She apparently gained a pound in her first week with the g-tube, so it’s certainly doing its job.

Last week we saw the orthopedic surgeon. He’s really happy with how Maria’s hip and broken leg healed so he gave us the go ahead to get back to normal activities as she can tolerate them. As soon as we got home, I started working with her on standing. It took 10-15 minutes for her to figure out what I was trying to get her to do and then, with a lot of support from me, she stood up. She had an enormous smile on her face. I had her hold the stand for a few seconds and then sit. We did it twice more and then three times after supper. I don’t want to exhaust her, but every time she was a grinnin’ fool.

The next time I came by, I took her out on the bike. It’s been months since she’s been on it so I figured I’d be lucky to get her to pedal at all, but I wanted her to get familiar with it again. We got about three houses along the sidewalk, and I felt the bike pull away as she started to pedal! She’d do spurts of 1-2 revolutions, and then let me push for a while, and then peddle a little and so on. It was great.

There’s still a lot of work ahead, but I think she’s ready to get moving.

Well, it’s done. Monday afternoon, Maria’s feeding tube was placed in her belly. The surgery went well. It was so fast that Manoli and I barely finished our lunch downstairs when they paged us to come to the waiting room. I always hate seeing her in the recovery room (and fortunately, I always forget how bad it is). She has the oxygen mask on (I call it the gas mask), her eyes are red and wild/confused. She made a couple poopy noises, which I took to mean pain because everyone knows you don’t poop right after surgery. But it really was poop, and a stinky one at that (I only say this because they changed her when we got to her hospital room and put it in the garbage in the room, which wasn’t changed until the next day–yucko).

It took a while to find our room because the nurse first took us to the phone #, instead of the room #, then to the wrong floor. We finally got settled in, and Manolis went home at dinner time or so. At 6ish I asked for pain medicine because Maria seemed to be uncomfortable, they gave her a Tylenol suppository–I assumed Tylenol + codeine, but no, plan Tylenol. I asked for another dose at midnight-ish, the nurse said she wasn’t due until 1am. Apparently we were asleep (I was sleeping with Maria) at 1, because she didn’t end up getting her 2nd dose until 2:30am. When I mentioned to the surgeon intern/resident/whatever he was that I didn’t think her pain had been managed adequately, he said surgery like this doesn’t really hurt. Well, how about if I stab you in the stomach 3 times and then you can tell me how much it hurts.

The anesthesiologist agreed to put 2 IVs in Maria, just in case we had problems like last time, but they never flushed the unused one. Never. And when the nurse was removing the IVs so we could go home, the “spare” one wasn’t even in her skin anymore. Great back-up, huh? Also, she is listed as having MRSA, since she tested positive for it last time she was in the hospital. That means everyone who comes in the room (except parents) has to put on a gown and gloves. Recovery room nurse said Maria has to test negative 3 times in a row before they’d list her as negative for MRSA. So I kept asking them when they were going to swab her, and they never did! So that means next time she goes to the hospital, it will be the same thing–gowns and gloves. I like that hospital in many ways, but they have been doing very stupid things recently.

At 6am, they did the first tube feeding. The nurse who did it had never done it before, so had to have another nurse come check it, which she did, w/o saying a word to me. Great training for us… Maria tolerated that feed well, then they gave her another one at 11am, that was fine too, so they said we could go home. Can you believe it? A predicted overnight stay was really just overnight?! Even though I could tell Maria was uncomfortable, she ate yogurt for breakfast and pudding for lunch; ate well, seemed to enjoy it, had fun playing her anticipation game because the food is cold and she’s sensitive to cold. We got out of there by 5pm. The safety vest and seat belt on Maria’s wheelchair are either close to, or on top of, the button, so I folded over one of my shirts to protect it and we put the belt/vest on kinda loose and funky to make it home.

I could tell she was really feeling it when we got home, so I gave her her seizure meds (which she didn’t get all of her doses at the hospital–great, huh? Not getting all her proper doses of SEIZURE Medicine) and Tylenol. Waited just a bit, then gave her some of her codeine and some valium for good measure. So then she just looked uncomfortable and stoned. I did an overnight feed, which seemed to work ok. So I guess all is well, although I can tell it bothers her, of course, but in a couple days it should feel better. I know it’s the right thing, but I’m still a llittle sad we had to do it. It will be so great for giving her meds at least.

So now maybe I’ll have time to focus on what to do with my little pain issue….

Maria got her splint off on Monday and seemed pretty happy to be free. She is supposed to take it really easy and then she sees the orthopedist again in three weeks. He said she will almost certainly start on a calcium supplement at some point, but not right now. Cathy is concerned Maria won’t be able to do hippotherapy, but the doctor said it would probably be fine.

She is scheduled for her g-tube surgery in a week and a half. She supposed to stay one day in the hospital [pause for laughter]. She has never stayed only one day in the hospital. We expect 2-3. However once it’s done, it will be much easier to keep her nutrition up so she should get stronger pretty quickly.

We had our appt with the gastroenterologist and nutritionist late last week. The nutritionist was the one we had last time, the one who was judgemental and irritated the crap out of me (and Manolis). I specifically asked NOT to be seen by her again, requested the other one, and this one showed up. Manolis told me I offended her by saying I thought we were seeing Janet, I specifically made an appt with her. Tough shit! She offended me last time. She was a bit more subdued this time.

There wasn’t much to talk about, I updated them on what’d happened since the surgery, they could tell we were unhappy about our decision, but we’d decided we need to get a Gtube for Maria. The doc explained the 2 types of surgery: the easy way requires an upper GI where swallowing barium is required (NG tubed barium is ok), so they can be sure Maria’s stomach is on the right (for some kids it’s on the left). So this would be 2 more appts before the surgery–1 for the upper GI and 1 to see the surgeon. The hard way is done by laparoscopy, so the surgery is a bit more involved and no barium swallowing is necessary. A separate visit to meet the surgeon is required regardless. Our appt is Wednesday. He’ll make a recommendation on which type he thinks would be best. I already know it’s going to be the complicated one. I’m going to ask (demand?) that Maria get 2 IVs placed so if one fails, she’ll have another one available. We can’t go through what we did last time.

I asked if we needed to wait until she’s less compromised and he said no, that’s why we’re doing this. I wish I’d remembered at that moment that the reason we waited so long to see him is because HIS girl who answered the phone said we had to wait. I said I wanted to get it over with and she said we should wait a month or so. I’m sure he would like to know what the person answering the phones is saying…

Maria stayed home Friday because she had a fever Thurs eve and Friday. She was off Thursday morning, seemed very sad. We thought it might be because we were going to see the GI doc that afternoon, but maybe it was because she was already starting to feel crappy. She seems much better now. Maybe because she had a Shin Jin Jyutsu treatment Saturday?

We went to Sedona today for me to meet with a medical intuitive who gave me some interesting theories about my health. She’s one of the few in the world who’s trained to read the iris and sclera (whites of the eye) to determine your health and what to do about it. It was well worth the $ I paid — esp if it will cause me to keep my uterus and/or avoid another surgery. We’ll see… (oh yea and/or get rid of my pain)

We are all still pretty much in shock about the broken leg thing. It almost certainly occurred over the weekend, when Cathy and Manolis had her. That’s just as well. If it had happened at school, or even when Sue or I were taking care of her, it would be harder to get past. Nobody did anything wrong, but we all feel guilty anyhow.

In addition to the extra 3-4 weeks in a cast, there is the long-term “one more damn thing to worry about” aspect. This is not uncommon in kids with CP. They tend to be malnourished due to feeding problems, and often don’t walk so don’t bear weight. These lead to brittle bones and ongoing osteoporosis-type problems. Yippee.

Maria continues to refuse to drink much. She eats OK–not great, but OK–but doesn’t drink more than a few ounces a day. Cathy has to tube her every night and get two cans of stuff (Nutren, PediaSure, whatever) down her, and then Maria pulls the tube out by morning. Cathy tried three cans one night, spread over more than three hours, but Maria threw up. It’s not just the volume. This stuff is super-rich, high-calorie liquid and the body just can’t tolerate a lot at once.

Maria goes to the GI on Thursday and it’s pretty much certain she’s headed for a g-tube. That will make it easier for us to get liquids into her over the day rather than all at once. We’ll still feed her normally and work on getting her to drink, but the tube will be there as a backup.

For the past couple days, Maria has been gasping a lot whenever we move her. Her left hip seems very tender. She usually does better in school than at home, so I sent her to school with a cautionary note that she’s been extra tender so take extra care. 2 hours into school, the nurse called and said she thinks Maria needs to be seen by the doctor today. I’d already called the orthopedic surgeon at 8am, so I called them again and said we need to come in today.

When we got to the doc’s office, he sent us in for xrays. They took many films of her left leg, top to bottom. Then a few short moments later, the doc came in and told us Maria had a fractured distal femur. I said, “she has a broken leg?!” Yes. Our daughter has a broken leg (thigh bone near the knee). Her bones are porous, like from osteoporosis. He said it’s not uncommon to have fractures like that in kiddos that don’t weight-bear much. OMG! And, he said if it happens again (AGAIN?! really?!), then he’ll prescribe Fosamax for her.

They put what they call a splint on her. Looks to me like a soft cast. It goes from her toes to her upper thighs. She has to have it on for 3-4 weeks, and he recommended using the giant wheelchair again. It’s almost like going back to post-surgery.

This was the straw that broke the camel’s back, I’d say. This was too much for me. All the other stuff that’s happened to/with Maria has been out of our control, but this? This was caused by one of us. Something we did–not on purpose, of course, but still, something we did to her. I can’t hardly bear the thought. The doc was trying to blame it on school, but it happened over the weekend, I’m sure. When I called the physical therapist to cancel, she said something to the effect of, “I didn’t do it.” I quietly balled through most of the rest of the appointment, sniffling while holding Maria’s leg while it was getting wrapped, and all the way home. Manolis suffers in silence, I usually talk my way through things. This time I didn’t talk that much, but I think my crying upset Manolis in addition to the leg. I know both of us are wondering, what did I do? It may have been trying to get her damned new AFOs into the shoes they sold us that are too small, it may have been accidentally moving her wrong, who knows? When we got home, I drank 2 shots of tequila, which really helped take the edge off. I gave Maria pain medicine and valium, then shoved a tube up her nose to feed her because she’s not been drinking/eating well, so she fell asleep. too much…

Maria got her casts off last week, but the ordeal isn’t over. She’s harder handle now than when she was in the casts. Almost any time we move her she winces or cries out. I think it’s often muscle spasms but sometimes it’s obviously pain. She’s getting lots of Tylenol and Valium but those aren’t helping much. I figured she’d be weak after getting the casts off, but I never expected her to be even more immobilized. Still, it should improve as she heals.

Unfortunately her physical therapist, the one who’s been with her since she was about two seconds old, gave Maria’s spot away in the schedule. Cathy told her not to come by during the surgery recovery since she couldn’t do much, but now she’s having trouble fitting Maria back in. But Maria really needs the PT sooner rather than later.

Maria’s new legs are…odd. Her thighs are really curved and she’s kind of bow-legged. She actually doesn’t fit in her old feeding chair anymore because she’s so wide across her thighs!

Maria also went to the dentist and the geneticist this week. The dentist says she’s getting a real vertical gap in her teeth from the thumb sucking. The dentist talked about putting in a retainer but is afraid Maria would just flick it out, which I’m sure she would. Thumb sucking and crooked teeth are pretty low on our priority list so it’s hard to get that worked up about it.

The genetics doctor said that testing has made enormous leaps even over the last five years, in a large part going back to the Human Genome Project. They can find so much more than they used to, and the science is advancing so fast that if Maria’s tests come back negative the doctor wants her tested again in two years because the tests available then will be much more precise.

Obviously Maria’s not likely to pass her genes onto another generation, but it would still be a good idea to have a complete medical picture. Some of these developmental problems have other implications like organ deterioration, and it would be better to know early.