Maria Rose

Maria’s doing better but still not feeling great. She’s got her usual reaction to antibiotics–a really bad yeast infection. Right now we are giving her four breathing medications twice a day plus the inflatable shaker vest thing, though we can do that at the same time as the breathing treatments. Some of this stuff will go away as her lungs clear, but some of it is “rest of her life” stuff.

She’s definitely going to be out of school at least another week. I know that’s part of the reason she’s cranky. She likes school and misses her friends. Cathy’s going to take her to soccer this Sunday so she can be around some kids.

Last weekend, Maria’s Aunt Rose and cousin Amelia came for a visit. Maria really liked having them there and certainly needed some fun. They had planned to go to the Renaissance Fair, but with Maria just out of the hospital they decided that would be a bad idea. They just hung around the house but had a good time.

We got another piece of bad news this week–Maria is losing her PT. Barb’s been with us since Maria was about a second old and it’s going to be awful to lose her. The reasons are complicated, but basically Arizona’s efforts to increase disabled kids’ access to therapists is driving the smaller practices out of business so there will be fewer therapists around. You know, typical government stupidity. This would normally affect only the kids age 0-3, but there aren’t enough older kids to keep Barb’s practice open so she’s going to do something different.

Not only is it going to be rough to lose Barb, but it’s going to be hard to find a PT who has time available after school or on weekends. It may be a while before Maria has physical therapy, and she’s still recovering from her hip surgery even after all these months so really needs it right now.

Just a quickie to say Maria got home from the hospital Thursday night. The doctor doesn’t want her to go back to school for another week or two! To be fair, there is a big epidemic going through the school and it would protect both her and the other students.

There is a lot of new stuff and new medicines and so on. They also found evidence of really severe reflux, but we wonder if that’s simply because during her nine days in the hospital she was not upright very much and was fed almost exclusively through the g-tube. More nonsense for us to obsess about.

I had a nice long chat with the doc last night about Maria’s condition, he showed me her xrays, dumped a whole lotta info on me! I can’t really see what’s good and bad in the xrays, tho’ I could see the difference between the one yesterday and the one from several days ago. Everyone who listens to Maria says how great she sounds, but he says she’s still compromised. He said the scoliosis makes it a little harder to clear her left lung (which is the “problem” lung) and it will get worse with time as/if the scoliosis gets worse. Nice.

He thinks it’s not a bad idea to start trying to get a hospital bed for home. It’s a long process, so may as well start now. Yikes. And we’ll probably need a lift. (We’ve talked about that before, but we’re not ready for that yet–for one thing, it’s a huge piece of equipment.) He wants to order a vest airway clearance system for her (strap on a vest-like thing and it fills with air and vibrates her to shake up the mucus. It’s like chest PT on the front and back at the same time–I think I already talked about this, didn’t I?

He also tried this strange thing that not many respiratory therapists have tried here–it’s like a vacuum cleaner with a mask attached to the hose and it blows air into your lungs, then sucks it out. He did it on me and I couldn’t figure out when to blow out and when to suck in. It’s odd and I don’t think the resp therapists like it.

And he told me a bunch of stuff about inhalers vs nebulizers (which they call SVN treatment) and how both are made to inhale deeply, then hold your breath, so even though Maria uses a tube-thingy and mask with her inhaler and breathes 6 breaths, she doesn’t breathe deeply, so he said it may not be doing what it’s supposed to be doing. So i don’t know if he’s going to give us medicine to put in the nebulizer and we’ll just do that daily or what. Oh yea, and we’re supposed to do the vest (10 min at a pop) once or twice a day when Maria’s feeling good, up to 4 times/day when she’s sick.

He’s going to send us home with anti-biotics. He thinks we should wash our hands frequently around her. He doesn’t think we should go out among the people this weekend, but it should be ok still to have Rosie and Ameilia come as long as there’s no kissing on the mouth. I forgot to ask him when it would be ok for her to go back to school, the way he was talking (in a very kind, soft-spoken manner, I must say), it seems like we should purchase a bubble for her. “If I feel organized”, she can go home today; otherwise we can stay until Friday. Ha! Friday! The nurse just came in and is totally on board to get us out of here today (as is the hospitalist). I think we’ll all be happy to be home to get back to semi-normalcy–or what’s normal for us, anyway.

Oh yea, and they’re doing an upper GI this morning to see if/how much she’s refluxing, which is good because I was going to stop giving her the reflux medicine as soon as we ran out, so it will be good to see how it’s looking now. Lots of info. Much to process. I really like this guy, he’s super thorough and kind and gentle and looks at all Maria’s records from PCH to help him paint a picture of her. It’s one of our best doc experiences, besides her pediatrician. But, did I mention Overwhelming?! Oh yea, and this room is awesome–huge bathroom with nice tile, 2 walls of windows-floor to ceiling- and the staff is all so nice and friendly. If you have to have a sick special child, I suppose this is the place to do it!

Yes, Maria has a diagnosis now. The doc says this is what she has. I looked it up on Wikipedia and it’s the 2nd most common cause of lower respiratory infection (ha! so take that, all you judgers who assume Maria has aspiration pneumonia just by looking at her!). It’s similar to RSV (a serious virus, especially dangerous for young children), which is what the doc thought it was. It’s kinda like the flu and can be mild for older children, but dangerous for the very young, very old, and the compromised. So it’s a good thing Maria’s grandparents aren’t here to visit!

The nurse told us the hospitalist (pediatrician) would like to send us home, but it’s up to the pulmonologist. He ordered treatments with a vest for Maria, which is like a wide plastic belt that goes around her and gets air pumped in it so it does chest PT (pretty much pounds her) all over, front and back to break up the mucus in her lungs. He also ordered some other treatment, but the therapist didn’t know how to use it, so they haven’t done it yet. It’s supposed to make her cough. So he may want her to have some of those treatments (every 4 hours) before going home.

Either way, I want her to go home today or tomorrow because my sister and Maria’s cousin are planning to come for a girls’ weekend, and I don’t want to miss that!

Well, it’s Sunday and Maria’s still in the hospital (her 6th night) and no escape in sight. Her pneumonia doesn’t seem to be getting appreciably better. They’re going to do her 4th chest xray in a week tomorrow. Her pulmonologist (who we really like, by the way; he’s a bowtie-wearing quirky guy who must work 100 hours/week and who has a ton of experience) thinks she has RSV in addition to the pneumonia. He’s testing for all kinds of bacteria and viruses to decide which antibiotic will work best, since she doesn’t seem to be responding to the meds they’re giving her now.

We’re in the best suite in the house, so although it’s annoying to be there, at least it’s comfortable, and we really like the staff over at Thunderbird. Manolis spent last night and tonight so I can try and get some sleep. Last night it didn’t work, we’ll see about tonight… I’ll be there tomorrow night so I can be with her on Valentine’s Day morning. I’m going to try and go to work this week since I’ve about used up all my leave. We’ll see how that goes.

Maria is in the hospital. She went to the pediatrician Monday, got antibiotics, and he said to come back Tuesday morning. Monday eve she got a little better, although when I was talking to the pediatrician about her xrays, she started shivering (like she did in November). I don’t know if it was a fever thing or a seizure or ??? She got a little worse Tuesday; by the time we got into the pediatrician’s office at 10:30am, she was low on oxygen, high heart rate, panting, pale, low-key (lethargic-ish). He said he thinks she needs to go to the hospital. In an ambulance. With lights and sirens. First time ever (although she probably was lights and sirens from the hospital where she was born to the one 3 miles away where she had her VP shunt “installed” when she was a day old; but I have no idea because I’d just had a C-section, so I was in bed.)

They did another chest xray when we got here and they said it’s definitely pneumonia, so it is worse than yesterday. The usual hospital we go to was full and they said we’d probably have to be in the ER for days until a bed opened up, so we ended up in a hospital geographically closer to our house, but it takes the same amount of time because it’s all surface streets vs highway to Phx Children’s.

She’s been well taken-care of here, but we’ve now been here over 24 hours and she’s definitely not any better, and i’d even say she’s worse. The nurse thought so too because they added more medicine and more pulmonary treatments. The pulmonary guy came in this evening and said he doesn’t think she’s worse than last night, but she’s not better. He thinks we’ll be here a week. I thought the pediatrician was exaggerating when he said 4-5 nights… I’ve been a little freaked about how bad she seems to me–worse than I’ve ever seen her or than I remember seeing her, but it helped that nanny Sue and her aide from school, Elisa, came to visit. Manolis was here in the morning, so between the 3 of them, I got a few hours out of here. I thought maybe that’s why she looked worse to me, but I dunno.

Anyway, send your thoughts and prayers to her, she surely needs them!!! Now I realize that her other few bouts of pneumonia were but mere child’s play compared to this. yikes.

That Maria, she’ll do anything for attention…. She was sick on-and-off all weekend–cough, congestion, fever; then Monday seemed a little worse, so we took her to the pediatrician. He sent us for a chest x-ray, which indicated possible left lower lobe pneumonia, so he prescribed an antibiotic and said to come in in the morning, even if we were a walk-in, that’s ok. (The front desk just loves it when you do that!) It was after 5, so I’ll have to wait until the morning to make an appt.

We didn’t get her antibiotic until late, so she only got 1 dose yesterday; after a rough night, I just gave her a 2nd dose. She didn’t respond as well to a breathing treatment this morning, so I’m glad we’re going in today. She’s whimpering, panting, and coughing–not something a mama likes to witness…

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.)