Maria Rose

We had an appt with Maria’s pediatrician today (we love her!). She thinks we’ve reached the time when a G-tube is necessary. Maria’s still not eating and drinking up to par (or anywhere near par), and she keeps pulling the NG tube out of her nose (do you blame her?), so I’ve had to stick it back in at least once a day, sometimes twice. It’s been rough. It’s interesting how mentally and physically exhausting all of this is for us. I can’t imagine how it is for Maria.

I really don’t know what to do about the G-tube. I’ve been fighting it for so long–6 years or more. I think I’ve been right to fight it, but maybe it’s time to give in? If any special needs parents are reading this blog and have an opinion, please leave a comment because I’m looking for guidance, but not from the typical advocates (gastroenterologists and their nutrition henchpeople; feeding therapists)

It’s hard to determine Maria’s weight with all the garb on her lower body. Before surgery, she was right at 40 pounds. At the hospital when she checked out, she weighed 39.5 lb (with all the garb, weighed with a hospital bed). At the pediatrician’s today she weighed 47+ lb on one scale and 45+ lb on another scale. I don’t believe she’s gained 6 lb in a week. Sorry. I know I’ve been shoving high-protein Nutren formula down her tube as fast as I can, but there’s no way. I weighed her at home at it was 43.5 lb, which is probably more accurate. Why didn’t I weigh her at home the day she came home? Because I didn’t think of it until today. Oops.

I told the pediatrician what happened at the hospital and she thinks I should write a letter to the CEO, that he’d appreciate the input because that’s not the kind of service they’re trying to provide. Probably should. I’m curious what type of response I’d get. Someone needs to know because it was a very big mistake / bad process, something that needs to be changed. If it happened to another child or other parents, it may not have turned out so well.

Maria’s been out of the hospital a week. I’ve been off work 2 1/2 weeks. I need to get my mind back in the game. I’m walking around like a freakin’ zombie (w/o the brain-eating part). We’re going to try and have 1 day w/o help this weekend and see how that goes.

Maria got home from the hospital late yesterday. Cathy and Manolis are still pretty frazzled. So her “three day” hospital visit took nine days.

The trip home was interesting. Maria’s legs have to be in that position shown in the picture on the July 16 entry. Not only are her legs spread, but her knees are braced and can’t bend. She has a temporary wheelchair designed to accommodate the position, but it’s a folding wheelchair so technically shouldn’t be used for transport since it will just collapse in an accident. However what’s the alternative? Call an ambulance? So they drove home very carefully.

The bracing will make everything interesting: showers, diapers, even just transport around the house. They are figuring it out, but the house is already so cluttered with equipment it’s going to be interesting. That’s going to be life for the next six weeks.

Maria’s still on the NG tube because she’s not eating or drinking much. She’s on overnight feeds, meaning a pump slowly drips Pediasure down the tube while she sleeps. However last night, Maria pulled the tube out. The pump of course kept going, so when Cathy went to check on her, Maria was playing in the big pool of milk on the mattress. This is more than an inconvenience. If she pulls the tube out partway, milk could go into her lungs.

There’s also the issue of putting the tube back in each time Maria pulls it out–and she will. Cathy could do it alone when Maria was less than a year old, but it’s a bit harder with a struggling seven year old. She had Manolis hold Maria while Cathy inserted the tube in the hospital, and Cathy says he nearly fainted.

Maria’s more awake lately. We’re hoping that she’ll rally now that she’s home. Of course once she’s more awake, she’s probably going to get sick of being strapped in all the time so that will create a new set of problems.

I’m losing track of the days and of time! Time doesn’t seem to exist the same in hospitals. I go home about every other day to shower and chill. I guess the last couple days have been ok. Maria’s eating a tiny bit more, not much though. They finally put an NG tube in so we can give her milk (formula–Nutren Jr) and stop the IV if necessary. They’re trying to change all her meds over to the tube so if the IV fails again, we dont’ have to poke her again. I can’t count the times they poked her. It’s maddening!!!

I’ve been sleeping with Maria a lot. I think she likes it. This morning, her lower body was in the middle of the bed, and her upper body was twisted to the left — I think she was looking for me because I was in the “parent bed” in the room. Her shoulder and bed were wet (from drool), so I think she was there for quite a while. Poor thing.

She’s been acting like she’s in pain a little bit more, esp in the late afternoon-evenings. We’ve been giving her non-narcotic pain meds (except for the oxycodone they gave her yesterday, which caused her to scratch her nose and eyes for HOURS. No exaggeration.) Then they gave her Benedryl, which didn’t work so well.

Anyway-the good news is she’s been acting a bit more herself–she started to pull the tube out of her nose while the milk was going in, which freaked me out. (I think the nurses are getting tired of me…). She’s been playing with the toys and smiling a bit more and her eyes have been open a bit more, but so bouncy bouncy her eyes are, so I know she’s not up to speed yet.

Cross your fingers for Friday, especially because it seems they have the back-up team on board on the weekends…. We’ve had some awesome people on the weekends, just not all of them are. Anyway, shower and back to the hospital I go!

I visited Maria in the hospital today. I haven’t gone until now because we figured she’d be coming home soon and Cathy will need me more then, but now that we are headed into the second week it seemed like a good time to visit.

She slept most of the time I was there. She’d squeeze my fingers if I held her hand so she was sort of aware, and occasionally she’d open her eyes a slit to look around, but most of the time she was out of it. She frequently winced or grunted or jerked so she’s obviously in pain, and I suspect she’s not sleeping all that deeply.

She woke up after I’d been there about an hour so I tried to feed her. She took two tiny bites and then was dead asleep again. The doctors are very concerned she’s sleeping so much. We’ve told them this is what she does, but they are still pretty freaked out about it. Until she eats and takes her medicines orally, they can’t send her home. By the time I left they were talking about doing an MRI to make sure her shunt is OK, and putting in an NG tube so she’ll get some nutrition. Frankly I think they should have tubed her days ago.

She tested positive for MRSA (antibiotic-resistant staph infection), but the doctor said practically anyone tests positive for that. Still, it’s one more thing they can obsess about. We are all washing our hands a lot just to be safe.

The orthopedic team have officially declared her to be OK, so she’s the staff pediatrician’s problem now. The surgical site is fine and she seems to be healing OK. However the staff is now making plans over the next several days, so that implies they don’t think she’ll be going home soon. At this point it’s up to Maria. Until she wakes up and starts eating, she’s going to be staying in the hospital.

I thought yesterday was going to be our day, but they put Maria in her wheelchair for the 1st time for 30-40 minutes. Then unbeknownst to us, the physical therapist got sick, so we never saw her again. Maria got pain meds before getting in her wheelchair, but, again, unbeknownst to us, the IV in her neck went bad–yes already, so she didn’t get the pain med in her bloodstream, so when she was in her wheelchair for an hour and she was in pain and we were going to give her valium and discovered her IV was blown, so we got her back into bed, called the IV Team, Thank God they sent a guy who got an IV in in one shot, so then I think they gave her valium, but by then, the damage was done and Maria was back in her happy place. Not interested at all in eating or drinking anything. So we lost another day.

Here we are on Day 6 and she’s sleeping all day. The ortho surgeon came in and is happy as a clam at how Maria’s doing. Small bump in the road. No big deal. Then the floor doc?? some doc came in, and then another doc came in (with a “higher rank” it appeared) and said she was concerned that Maria was still sleeping. She was concerned that for no reason that morning, Maria’s oxygen went down to the 80s so she was on O2 again for a couple hours. She ordered a chest xray and labs (bloodwork). By the time I left at 3:30pm or so, the nurse hadn’t been able to get enough blood and was going to have to stick her again, not sure how that went. The doc said something about previous labs where Maria’s calcium was low (1st I’d heard that) and her protein was low (1st time I’d heard that). They pulled out the catheter already, so they had to try and get a urine sample another way (cotton balls….) to see if she’s peeing out the protein, which would be bad. They’re concerned that she’s only on IV fluids for 6 days and the fluids aren’t nutritionally complete. I told her this is Maria’s way, to pass out for days, but I also told her I’m glad she’s checking blood and chest xrays to be sure there’s nothing else going on.

Debbie (Jin Shin Jyutsu) is convinced Maria’s out of it because of the morphine, but it’s been more than 12 hrs since she’s had any. We can’t give her anything by mouth until she eats, so I guess it’s morphine or nothing for pain. She hasn’t seemed to be in pain today. We put her in the wheelchair for a couple hours, she was mostly asleep, but seemed comfortable.

I came home to take a shower (do it about every other day); guess it’s about time to go back. Just another bump in the road…….

Last night, about 11 pm, I got a text from Cathy: “So now we are in the icu…They already got a central line in her neck. Long story. Long night. Poor sweet baby.” Hmm, that can’t be good.

I called her today for a little more detail. They took out Maria’s epidural yesterday and are now giving her Hydrocodone. And Oxycodone. And Toradol. And Valium. And Ativan. And Morphine(!). However there have been a few teensy complications.

Apparently the IV had been placed wrong so much of the drugs (including her seizure meds) weren’t actually going into her bloodstream. So they were telling Cathy to give her oral meds…you know, because it’s a good idea to give oral meds to an aspiration risk who is doped to the gills. So yesterday was a rough day, and the nurse was, um, less than experienced so that made it worse.

Then about 6, Maria started gasping for air. Cathy couldn’t find a nurse and nobody was answering the call button. By coincidence a respiratory tech came by and he was concerned. Maria started to panic, her heart rate shot up, her O2 level was low. They tried to give her breathing treatments, but she fought against the mask and just panicked more. The nurse finally showed up but was little help. Finally a resident came in who seemed to have a clue.

Meanwhile the IV team showed up to take blood and were sticking Maria over and over. Her platelets were WAY lower than they should be, even considering the surgery, so that was another concern. Maria went into shock, got stiff, started shaking, had no circulation in her extremities. I’ve seen it before and it’s not fun, and of course the medical people are a bit concerned. Then she just kind of went limp – we call it “going to her happy place” – and they freaked out more.

So she’s in the ICU now. She’s getting better care and things seem to be going better. They are still trying to give her oral meds and I suggested to Cathy that, as much as we hate that little yellow tube, Maria really should be on an NG tube for meds right now.

On top of this, Cathy is starting to think past the surgery and some of the challenges we have ahead. How do we change her diaper? How do we bathe her? How do we transport her? Her legs need to be spread-eagled for proper healing so they are loaning her a special wheelchair, but it’s a folding wheelchair and you can’t use that for transport.

The doctor originally told Cathy that Maria would be in the hospital for three days and Cathy said that meant it would be a week. He assured her it would be three days, and Cathy just nodded – let him believe what he needs to. Sure enough, Maria is pulling her usual trick of staying 2-3x as long as the doctors predict.

It’s been about 24 hours since Maria’s been out of surgery. I think things are going ok. She was very pale yesterday, so they tested her blood and some level was low so they gave her a blood transfusion. Her color is good now, but her face is very swollen–she looks like a little Chinese girl. Her forehead looks the same, but her chin, cheeks, nose, and eyes are all swollen. One of her hands is too. They don’t seem too concerned by it… Last night her legs were a bit swollen, so they put ice bags on them. They’re better now.

She’s been pretty much out of it (asleep) since the surgery, we could barely get her awake enough to give her her meds this morning. The difference this morning is that, although her swollen eyes were closed, she kept grabbing for me, so I had to stay close to her. Nanny Sue came today, so she’s with her now. Daddy’s coming later this afternoon, then I’ll take his car and go run a couple errands.

We’re in a new room on a new floor in a new hospital. The rooms are nice, kind of European in design. Our room is also for monitoring epilepsy, so we have a fridge–which is helpful! The bathroom w/shower is super nice and clean. The bed is so much more comfortable than the beds at St Joe’s where I was always sleeping on a big crack. This room is private, of course, has a small table and a chair, a (comfy) reclining chair with footstool, and a window with a deep window sill. Lots of floor space, cabinets, etc. They don’t provide meals like they do at St Joe’s, but the cafeteria has plenty of options. They also have great furniture in the common spaces, lovely colors, and nice artwork spread throughout; so if you have to be in a children’s hospital, Phoenix Children’s is the place to be, I suppose!

That is the name of Maria’s surgery. We went to her pre-op appointment and they’d forgotten to put us on the schedule–I think when the surgery was re-scheduled, she made the pre-op appt, but forgot to put it in the computer or something. We saw the nurse practitioner, who seems awesome, but not the doc. Then Friday they called us and said the doc wants to see us, so we’re going in again Monday afternoon. I hope it’s not a bad reason that he wants to see us…

They’re doing both hips at once because if they don’t, the scoliosis gets worse. The surgery takes about 4-5 hours, but that includes the prep time and post-op. She’ll be away from us for 4-5 hours. They’ll put her to sleep with gas and when she’s out, they’ll do the IVs and they’re going to put in an epideural to do the surgery, then for at least another day or two until the worst of the pain is over. They’ll turn it off, see how she’s doing, and either take it out or turn it back on–depending on her pain level. So it sounds like they’ll be on top of the pain situation–which is what I’m most concerned about. The doc’s son had the surgery when he was 12, and he said it was the worst thing he could be put through; the nurse practitioner says he’s been scaring the crap out of the parents. so I’m glad we saw the NP first. I felt much better after this appt (and, of course, Manolis felt worse. He’s not been freaking out like me, now I’m freaking less and he’s feeling it more.)

Ok, so what they’re going to do is cut the thigh bone up near the ball and insert an L-shaped piece of metal, which I think is intended to change the angle of the ball and have it fit nicely into the socket. You could really see how far displaced her left hip bone is. The right isn’t as bad, but it is a little out of whack too. The left ball (top of the bone) is already getting damaged; if it gets too damaged, they can’t do the surgery, or it won’t alleviate the pain, or something like that. In a year, we have to come back for them to remove the piece of metal — this was something I hadn’t heard before, but she said it was minor surgery, probably out-patient. She said Maria should be in the hospital for 3-4 days, depending on her pain level.

For 6 weeks, she’ll have knee immobilizers and a pillow between her legs to keep them spread apart. She’ll be able to sit or lay down, but no standing or walking. I can’t imagine she’ll be going to school her first 2 weeks (school starts 4 1/2 weeks after her surgery), but we’ll see. They’ll loan us a wheelchair that will accomodate her new position. She’ll have 2 long incisions on her hips, possibly small incisions on her inner thigh (if he has to lengthen her tendons), and possibly 2 small incisions around her ankles and little casts almost up to her knees (if he has to lengthen her Achilles tendons). OMG!!

Friday when Andy was there, he said she’d been calm since he’d been there. Immediately after I started talking about the surgery and bone cutting, she started freaking out (getting fidgety, moving her hands, getting stiff, seeming anxious). It really seems like she’s reacting to us talking about the surgery and she knows it’s coming and she knows it’s a big deal. So we’re not going to talk about it anymore in front of her.

Two more days of school. thank God! Thursday we picked her up from school to take her to a doc appt and she had a bruise right next to her eye. The teacher handed her off to us and didn’t say a word. I just don’t get them. I’m going to write them a note Monday morning about the bruise. What if it had been an inch over-it would have damaged her eyeball!

Speaking of eyeballs and optic nerves — still haven’t talked to the neurosurgeon. I left a couple more messages. I’m going to email him. We had an appt with him Friday, but it got cancelled. I tell you…..I can’t believe how pissed I am about him dissing us.

Maria’s had a busy week. She turned 7 on the 23rd and she lost both front teeth within a few days of each other. Fortunately she managed to get both of them out herself. I found one in her bed with some blood on her pillow, in her mouth, on her thumb. Yikes. The other one was hanging precariously for a few days. We kept trying to yank it out because it seemed to be bothering her, but we couldn’t get it. Then one evening, she was chewing on her hard plastic medicine bottle, I heard a little yelp, and there it was. Such a good girl.

I feel bad about this year’s birthday. I did manage to get a few little things for her classmates–crayons, magnifying glass, and a stencil for each kid, and a bucket full of musical instruments (cheap, plastic ones from Party City) so they could have a band. They had a little party (which of course the parents can’t go to because they don’t let the parents in the class…) at school, and the kids on the bus made her a card. We saw my friend, Monica, and her husband, Ted; they were in town for a wedding. They gave Maria one of those books you record. It has magical princess music on every page–very cute; and a fairy card that also has music. Sue gave her lots of clothes, as usual, and a cool huge card where a butterfly jumps out at you and a kid yells “Happy Birthday!” It is so cute! And of course, our buddy, Elvin (my old boss), and his wife gave her a fab card. And she got some $$ from her grandparents and a couple others. Thank goodness for friends. Manolis got her balloons and I got cupcakes, but that’s about it. We didn’t even really celebrate until the weekend, and then mostly just for the photos. Ahhh, the good and bad of having a child with severe developmental disabilities…

I guess summer school is going ok. They are all starting to fall under the magical Maria spell, and adoring her, and saying very sweet things. I expect nothing less. But it still bothers me that I’m not allowed to see her in class……I guess it’s just getting used to something new. She’s doing better with eating her snack and drinking all her milk, so it seems that she’s feeling more comfortable with them and they with her. Only a couple more weeks anyway. It’s a good thing for them that I’m so dang busy at work.

I filed the appeal for the bath chair with the state. They have a month to respond to the appeal. I think it’s pretty good, but I thought the one for the stander and walker was awesome and they still denied those (until I called the newspaper, that is). Now they’re trying to cut respite in half. They had 2 meetings on Maria’s birthday. I was going to go, but didn’t have the energy. Good thing, sounds like it was completely packed and very emotional. Not sure I could’ve taken it… Ahhhh Arizona, I really like living here, but the politicians do so many stupid, thoughtless things.

Let me caveat this blog entry by saying I’m in a big funk because my pelvic pain issue has been raging the past few days and I’m frustrated about it….

As Andy mentioned, Maria started summer school this week. There was no orientation, no meet-the-teacher, no real info handed out besides school address, times, and bus pick-up times. Manolis and I went to the school Tuesday to meet the teacher and see the classroom. He’s nice enough, but not a good communicator. We met lots of people, but since they’re all new to me, I was having trouble placing them or remembering any names. I asked to see the classroom; there were about 4 women in there, nobody introduced themselves or told us what they did–so do they all work with Maria or do they concentrate on a couple kids? Who knows? There are no tables or chairs. I was trying to figure out what Maria does, where does she sit, etc. Had to play 20 questions to get anything. She has no walker or stander, but they did say the PT was bringing her walker over. I told them how important it is that she stands, walks, etc. to strengthen her legs in prep for surgery. She’s on the floor some and on bolsters some, but that’s not 3 hrs worth. Is she in her wheelchair? Who knows. Although she’s only in school 3 hrs/day x 4 days/week, plus about 90 min on the bus each day, she’s hardly eating or drinking anything. Why? Are they not trying hard enough? Are they being too tentative? Are they even trying at all? What the hell?! As you can tell, I’m getting pretty worked up about it, but it might be my crap flaring up, not about the school. Manolis thought it was ok, so I have to trust his judgement.

We did see Maria’s home OT who she had from 0-3 yrs old! Haven’t seen her in 4 yrs. I know this because I made her a photo book and still had it, so I sent it in for her. (she’s not with Maria, but she’s at the school). I met her vision teacher-who I really liked! Don’t recall her name. She’s sharp! I saw her hearing teacher, we like her. She does sign language for/with Maria and Maria really responds; so much so that her para (aide) who we love so much was going to take sign language in summer school, but she got called in to work at the last minute and had to miss the sign language class. Bummer! That was also a good thing, that we saw Elisa. Again, she’s not in Maria’s classroom, but she’s there and they know she knows Maria, so I told them to be sure to ask her anything if there’s questions. It’s been 3 days and I still feel traumatized–I need to know what to expect and they’re not giving it to me. I know all I need to do is ask. and ask. and call and ask. Add it to the list…

Appt with neurologist today at the CRS (Children’s Rehabilitative Service) clinic today. He said her electroretinogram and visual evoked response tests came out normal–which is pretty great considering Maria has cortical visual impairment, etc. All her tests have been “normal” (considering …), which is good, but we still don’t know what’s causing the further optic nerve atrophy. Still no callback from the neurosurgeon –it’s been a good 2 months now. We have an appt with him July 8. I don’t even know what to say to him if he can’t even bother to return my call regarding my daughter’s atrophying optic nerve. Really?! And I need to call her eye doc and see what his next move is.

We met with the neuro-developmental pediatrician last week. Hadn’t seen her in over a year. She said we should take the Amantadine for 4-6 weeks, then go off it for a week. It’s more effective that way. That’s the med that is supposed to improve hearing and cognition; the one that seemed to give her a boost of energy. She also said metabolic testing isn’t necessary for the optic nerve atrophy. Good to know. Couldn’t be of more help on that topic, besides giving me an article that was rather depressing, so I just barely skimmed it (talked about all the other issues kids with optic nerve atrophy often have, like brain damage, cognitive difficulties, etc etc) I dont’ really need to read that. The doc thinks we need to get Maria an adaptive potty seat. First I have to complete the appeal for the bath seat, which I haven’t had a chance to finish because I’ve had so much other crap to do and it’s due very soon. She also recommended a gadget that would hold Maria’s arm in position to help her eat. She said I should take Maria to my PT and see if he has good ideas on gadgets/equipment that she needs. I like seeing her to check out what some of the other docs are saying. I told her about our disappointing appt with the nutritionists, and she said she’d heard similar negative stories. They were mean, condescending, rude, etc.–even Manolis noticed!

Latest thing I heard is that the state, in all their wisdom, wants to cut the respite hours by 50%, so instead of 15 hrs/wk, it’d be 30 hrs/month. Respite is a lifeline to those single parents, and even 2-parent households. When Andy comes on Sundays during the schoolyear, it’s great because I know that Sunday is my day to do what I need for myself. So anyway, I’m going to the meeting on Maria’s birthday.

Tomorrow night we’re going to some 45-minute presentation on some new company that’s like Costco and in return, we get 2 free vouchers for a 7-day cruise on Carnival, leaving from any major port in the US. We’ve been wanting to take a Caribbean cruise, but haven’t been able to figure out how to afford it. This might be just the ticket!!

The rear tires on the van were bald–we’ve had the van for less than 3,000 miles. So the $500 for tires and $300 for alignment was taken care of by the van place (Ability Center) because the van is still under warranty. thank goodness!