Maria Rose

Maria did better than I expected at school this week. Of course, everyone was so happy to see her! She actually made it through an entire day on Wednesday. The other days she fell asleep in early afternoon. One or two days the nurse couldn’t even get her medicine down her, she was so OUT.

As far as eating and drinking — not much of an improvement. We’re still fighting it a lot. She’s not doing well at all with this. I’ve had to stick that damn tube in her nose many times this week, and I’ve been having a hard time with it more often than I like. I know it has to do with positioning, mostly, if she tilts her head back, it doesn’t go past the curve in the nasal cavity –TMI, I know!! I’m so proud of Manoli, though–yesterday morning I had to tube her before school and I told him he could go away, but he said he’d help. And I had the hardest damn time that time. I don’t know how many tries it took, and she was yelling! Oh my….it SUCKED! But, we got ‘er done, and she promptly fell asleep.

Of course, I pulled the tube out before school, then had to tube her again in the evening. Gave her 2 cans of Nutren (like Pediasure), then at 12:30 or 1am, I gave her another 2 cans. She was asleep when I started the drip, but I guess she can feel it and she woke up. I was laying in bed with her because I don’t trust her to keep the tube in while it’s dripping, and danged if she didn’t stay awake the entire 2 hrs it took (I dripped it slower than usual–1 can/hour). Since she was still awake, I let Manoli have the next shift, and he said she stayed awake for another couple hours or so.

He said she kept yelling, like maybe she was in pain. Shen sneezed the tube out at about 3am, and kept yelling, so it wasn’t the tube bothering her. She’s been yelling a lot in her sleep, like she’s having nightmares. Poor sweet thing!

Today, thank goodness, I asked Sue to come over for part of the day. She tried so hard for so long to get Maria to eat, then to drink, same with Andy last night, try again and again and nicely and patiently and nothing. Finally at about noon today Maria started drinking out of her bottle, not sure how much she got down. Wow. It’s amazing how much this type of stress takes out of you. I’ve found my multi-tasking capabilities are greatly compromised (partly from my pain medication, too, I’m pretty sure), and I’m even more forgetful than usual.

Tuesday it will have been 6 weeks, so we have an appt with the ortho surgeon. I do so hope she gets all the crap off and he doesn’t say–oh, let’s keep it on for another week or more.. Then Friday we’re going to see a geneticist. I’m very curious if Maria does have some sort of chromosomal abnormality. Might give us more info? or depress me more. we’ll see!

Can you believe Maria’s in 2nd Grade?! Can you believe her mom scheduled an appt at the eye doc the morning of the 1st day of school before school? I thought it’d be a quick in-and-out, but although we were the 1st ones there at 7:45am, we still waited 45 minutes to be called back and 2 doses of dilating drops later…. it was 10am before Maria got to school. Annoying! Her optic nerve looks stable, not worse, good! Her astigmatism is worse, esp in her right eye, not related to the optic nerve. So she needs new glasses again…$200 cha-ching! Everyone was so happy to see her. The school wanted to meet with me last week, in fact I went in twice to make sure they knew everything about her casts, etc. So different than summer school! She made it to 12:30p when the nurse called and said she was so out of it, she couldn’t give her her medicine. Tomorrow’s another day!

Yesterday we went to soccer. She did ok for a while, then faded. But Jill couldn’t be swayed, she got everyone to play parachute and duck-duck-goose to try and make Maria smile. I think she felt kinda crappy all weekend, actually.

Monday eve and I stuck the tube in again. 8oz per day just isn’t enough liquid in AZ in August. I may try and slip in another can as long as I’m up… then I’ll try and get another couple cans in her in the morning, if she hasn’t pulled the tube out yet.

We’ve all reluctantly come to the conclusion it may be time for the G-tube. Even Manolis agrees. Cathy called the gastroenterologist’s office about it and they said she has to meet with a nutritionist first, and that won’t be until mid-September. We are a little concerned because Maria needs better nutrition *now* while she’s recovering.

Maria started eating well early this week, though she was still drinking less than she should. She was even off the NG tube because she was getting enough orally. That lasted all of two days. Now she’s back to eating little and drinking little. Cathy’s going to put the tube back in tonight and see how much Nutren (basically heavily vitamin fortified milk) she can get down it before Maria pulls it out again. Maria’s also fighting her medicine a LOT.

Maria saw the orthopedic surgeon this week. He’s happy with how she’s healing. He agrees with the decision on the G-tube but is fine with waiting until September. He said they couldn’t do it now anyhow since Maria is already compromised from the hip surgery. Even though the G-tube is pretty minor surgery, it’s still inpatient and should be done when she’s stronger.

We got into see the neurosurgeon today. You know, the neurosurgeon we’ve been trying to get an answer from about Maria’s optic nerve atrophy for MONTHS. He said it’s definitely not from shunt pressure and explained why. I guess that’s why he hasn’t called – no news is good news. However that still doesn’t explain what’s happening. Just to be 100% sure everything’s fine he’s going to tap Maria’s shunt next week – stick a needle in and see if some fluid oozes out. It’s a quick procedure in his office.

The neurosurgeon was VERY concerned about Maria’s lack of eating and drinking. He pointed out that after surgery the body needs a lot more calories to recover. That’s kind of obvious in hindsight, and I’m surprised the orthopedist wasn’t more concerned. So we are going to push the NG tube more and it seems increasingly certain Maria’s going to get a tube in her belly.

We’ve heard lots of second hand stories about parents who went the G-tube route. Every story ends with the parents being really happy with it. It takes the stress out of eating, the kid gains more weight, is more healthy and energetic and so on. Still, it sucks to do it.

Maria isn’t scheduled to get her casts and bracing and so on off until just over a week past the beginning of school. We aren’t sure how that’s going to work. Since she can be transported only in the new, loaner wheelchair that means she can’t ride the bus–the loaner doesn’t have a rigid frame, isn’t crash tested and isn’t designed for transport. We also don’t know how well she’s going to manage in school, but we’ll figure that out then.

Her legs will of course be really weak after the casts come off so there will be a lot of work before she can get back to standing and walking. She’ll be much stronger in the long run, but there’s still a long road ahead of us.

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!