Specialist Day

Today is specialist day. That’s always fun. Nothing is wrong, it’s just time. I hoped to get these done over Christmas vacation, but those are coveted appointments and I did not call soon enough.

Maggie, like many kids with special health care needs, has several specialists. Pediatrics is already a specialty, so these are sub-specialists. We have pediatric Pulmonology, urology, neurosurgery, neurology, gastroenterology opthamalogy and others as needed. I am supposed to keep current with all of these so that Maggie’s meds and supplies can flow steadily. It is difficult to do that, especially when she is healthy in a given area. I am definitely of the “if it ain’t broke don’t fix it” school of parenting.

To the extent possible, I try to coordinate a couple of visits on the same day. I can minimize visits and the accompanying hassle by doing this. Besides, we are up there so often with urgent needs, over which I have zero control, that it is nice to exercise control when I can. That’s easier said than done. UCSF is an enormous medical center and these specialists are extremely busy people. Each department has its own layer of bureaucratic hell for patients to wade through.

There has been some attempt to coordinate the pediatric specialists by utilizing a “pediatric specialties” clinic. Makes sense, or it would if all the specialties participated in this clinic. Some do, some don’t. Even the ones that do are inconsistent in their approach. Appointments can be a nightmare.For me getting appointments on one day is a convenience, but I only live a mile away, so I can get there on separate days if need be. Some families come from hundreds of miles away becasue there are so few of these specialists around. If they have to come more than once it's extremely difficult, stressful and expensive.

I called the peds specialty number in mid December and was directed to a separate number for peds Pulmonology. Ok. Pulmonology told me the first available appointment was Jan 12 (two days ago) Ok. Now I need to coordinate this with gastroenterology (GI). Sorry, we don’t’ have any control over their appointments. Sigh. OK. I call the peds specialty number again and connect with Peds GI. They cannot do the 12th because the woman Maggie needs to see only sees patients on Thursdays. Sigh. Really? I am trying to coordinate this with peds Pulmonology. Oh. I can do that for you. REALLY?!?!? Great.

Why can GI control Pulmonology, but the opposite is not true? I do not know and I do not care. Its’ set up.

She asked which appointment should go first and I chose GI. Pulmonology will take longer because Maggie has ongoing infection issues there. In addition, they always run late. GI will be the shorter of the two appointments because Maggie is stable in that area and we will just tweak meds and feeding schedules, and they are always on time.

I do have to give GI a little ribbing however. I received a letter addressed to me indicating (in a rather chiding tone)that my child was overdue for a visit and that it was important to be vigilant about my child’s medical care. According to this letter, my child “Zachary” had not been seen there since January 09. Ok.

I do not have a child named Zachary and we were there in June.

Other than that, it was perfect.

Watch the EYE!

Maggie’s favorite toys interact with her. If Maggie can hit a toy and make it talk, sing, beep, buzz or play music, it quickly becomes a favorite. As you can imagine, we tend to hold onto toys that fill this need. Fortunately, there are quite a few of them available.

We had a stuffed Poomba, a character from the Lion King, which said hilarious things when you shoved bugs in his mouth. Maggie quickly learned to shove her hand down his throat to make him talk. There was also a Rosie O’Donnell doll that spewed “Rosie-isms” (e.g. cutie patootie) if you hit her in the chest. To be fair, Rosie was designed to be hugged or squeezed, but Maggie could not coordinate those movements and, let’s face it, that is just not her style. Maggie found she could make Rosie talk by slamming her fist into Rosie’s chest, as both she and the doll lay flat on the floor. She would do it repeatedly. It was hilarious. Rosie finally died of old age and abuse, but she had a great run.

One of Maggie’s favorite talking toys was/is Mike Wisowski from Monsters Inc. We have a version of him that says things if you drop him on the ground or if raise up one of his arms Maggie could do both of those things and if she lifted up the arm and tossed it at the same time, as she was want to do, Mike would speak sentences in rapid fire succession. Unlike the adaptations she made from Rosie’s intended use, Mike Wizowski was actually designed to be abused and tossed around. The sayings were appropriate for that use also. You would hear a voice that sounded like Billy Crystal san things like, “Hey, cut that out” or "OW!", along with encouraging sayings like “Atta Monster” or “Mike Wisowski, on the job!”

Maggie’s favorite Mike saying was “Hey, WATCH THE EYE!” She would toss that toy around repeatedly, going through all the sayings, until she heard that one and then she would throw back her head and laugh uproariously. Everybody laughed at that Sometimes she did this 50 times a day. My dad really loved it. This activity gave my dad a better insight into Maggie. He realized from this that Maggie was doing things purposefully, and had a great sense of humor. Every time he saw Maggie, whether she was anywhere near the toy or not, my dad would greet her with “HEY WATCH THE EYE!” and send Maggie into peals of laughter.

Mike #1 bit the dust and was quickly replaced with Mike #2. He lasted for a long time, but was eventually abandoned to the bottom of the toy chest. He reemerged about six months ago when we downsized from the toy chest to a backpack. Maggie is enjoying him all over again.

The backpack works great because Maggie can reach in and throw everything hither and yon until she finds whatever interests her. Nearly all of the toys that made the cut are noisemakers of some sort, so there is always a cacophony of sounds as Maggie tosses things around. As we pile them back in, you hear all sorts of conversations and noises coming from the backpack and that is hugely entertaining. It is like the toys in the Toy Story movies talking to each other. In fact, I am sure Buzz Lightyear and Woody are in that bag too, as is the Don Rickles Mr. Potato Head.

The other day I was alone in the front room putting all the toys into Maggie’s backpack. As I stuffed something in at the top, I heard Mike in the bottom of the bag say, “HEY WATCH THE EYE.” I laughed all by myself. Of course, it made me think of my dad, who has been gone three years this week, and I smiled all over again.

Who ya gonna call?

I am home alone today. This is not unusual, but for some reason I’m more acutely aware of it than normal. Perhaps because my husband and son are out of town and I didn’t interact with either of them this morning. I got up and did the morning dance to get Maggie out the door and came back to a quiet house.

I am busy. Tim's called three times regarding transcript stuff, and I’m trying to do the tax work for Maggie’s nurses. I have to tally up their hours for 2009 and prepare appropriate forms (with the help of Turbo Tax Home and Business) . I pay them and then get reimbursed from the state. If I don’t have tax forms for them it looks like I have a ton of income from the state, whihch would trigger tax obligations that I don’t owe. This way everything is accounted for just the way Uncle Sam likes it. It’s tedious work, but not difficult.

For some reason I am having trouble concentrating. I keep hearing a noise. First I think it’s just the quiet or the creaking of our old house, or the heater or something. But it keep bugging me. If I lean way over my desk I can see the kitchen sink to see if there is water dripping periodically. Nope. I get up and go to Maggies’ bathroom to see if the shower of sink is dripping. No. Heart sinking, I run upstairs to see if something is leaking up there that might be coming through the wall. Nope. All is cool. What could it be?

It seems to be coming from Maggie’s room. The oxygen tank sometimes hisses, but that is all good. Her cd player is off, as is the space heater the radio and all her medical machines. But I still hear it. I open the top dresser drawer and find the source.No paranormal activity here. Apparently, someone put Maggie’s “roll up keyboard” away in its sack without turning it off. The batteries are all but dead now and it is just making this “click” noise every 20 or 30 seconds.

Blessed relief.

Now it’s too quiet.

One of these things is not like the other,

I'm glad I posted that picture of the deliveries yesterday. Something about it caught my eye. One of the boxes of Maggies' food had different writing on the box. I had to investigate. Sure enough, one box was a different type of food.

Good thing I caught that. For most people that would be no big deal, but Maggie is allergic to everything under the sun. Allergic enough that she has landed in the hospital several times because of allergies. Using the wrong food could have been disastrous. Presumably we would have noticed when we opened the box, but the cans are exactly the same size and shape, only the labels are slightly different.

Funny how I noticed it in a photo but didn't notice it while I was looking right at it.

Where do you want it Ma'am?

Part of managing Maggie’s life is dealing with the supplies. She has a TON of medical supplies to be ordered, delivered or picked up put away and replenished both for home and for school use. I suppose we all do, but I cannot get what Maggie needs at a grocery store or even a drug store for the most part. I have to deal with medical supply companies, pharmacies and warehouse stores. Receiving every batch of supplies comes with at least one phone call, but generally requires several.

There are at least three medical supply companies in my life at any given time. Each has its own specialty and its own set of rules. The liquid oxygen is refilled every two weeks at the most, and that means someone has to be here to let the guy in and keep the dog from eating him He’s a nice guy and comes from the company that hands all the respiratory supplies. They are very easy to deal with. I call, tell them what I need and it comes in a few days via UPS, unless they can coordinate it with the oxygen delivery. Just yesterday, the suction catheters, nebulizer kits and oxygen tubing arrived.

Yesterday I was also expecting a delivery from the company that supplies her food, tubes, feeding bags etc for her GI needs. They too are very easy to deal with but they use a private delivery service that has some strange characters in its employ. They inevitably come well after dark and leave nine boxes of food and supplies in my hallway. One person left it in the driveway and drove off. Fortunately, I saw him and got the stuff before someone took it or the rain started. Last night all those boxes arrived just as dinner was coming out of the oven. I was helping the nurse with a procedure and had to leave the bedside, corral the dog and greet the strange man warmly as he piled up boxes. (see picture above) All this was happening while the timer was ringing on the stove. It was like a bad sitcom.

The third company handles the diapers and catheters and that stuff. That means two more HUGE boxes, which should arrive next week. This company is more annoying, but improving every month. On the other hand, maybe I am just getting better at complying with their rules. Unfortunately, the diapers they send are just short of what Maggie needs in a month and I have to order a case every other month from a local medical supply store. You would think I could just increase the order from this company, but no can do. They send the amount approved by the state under this program not the amount Maggie actually needs. They are not allowed to send me more, even if I pay for them. It is stupid, but that is not their fault. If I want more, I would have to go to a hearing. I would win, but at what cost? It is easier and cheaper to go to Clement Street and get them from the local dude.

On top of that, there are the meds that I need to get from Walgreens. I am a regular at Walgreens. Maggie is on eleven prescriptions when she is healthy and more when she is sick. Right now, it is thirteen. Over a period of a year, I managed to work it so they all renewed at about the same time, or at least in two batches a month. That cut my trips to Walgreen down considerably. Of course, the two antibiotics throw a wrench into that. I am going back today for the fourth time in a week. I love the people there, or most of them. I have definitely learned to avoid certain employees.

Then there are just the regular over the counter meds and supplies like wipes, gloves etc. Those suckers are expensive. I get as many as I can as Costco. Giant bottles and boxes of things are great prices.

Juggling and chasing all this is a pain, but it is part of the deal. The real problem is storage. I wonder if I can get economic stimulus money to rent the house next door to store Maggie’s supplies.

Today? Really?

Ahhhhh Monday. The first full day weekday of 2010. Today was to be Maggie’s last day of winter vacation. School was to resume tomorrow…or so I thought. Today, Monday, was some sort of teacher in service day, or so I thought.

I asked Lucy, the night nurse, to get Maggie up early today. Maggie has really been sleeping in this vacation. I wanted her up early so she will be on schedule for tomorrow. She was up and in her chair at 7:05, which is great. She was still wearing her pajama pants, but that’s cool. It is a good thing she was up and at ‘em because about 5 minutes later the doorbell rang. I thought, "Who in the world is at my door at this hour?" I walked through the kitchen to the hall, my heart dropping with every step. It couldn’t be Janice, the school nurse, could it? School does not start TODAY, does it?

Indeed it does.

Oops.

Not only was Janice at the door, the school bus was outside with the lift down waiting to load Maggie and her wheelchair. Janice just laughed because she thought I was kidding about classes starting tomorrow. Then she looked t my face and realized I had really screwed up. I told her I would drive Miss Daisy myself. Janice had to get to school to deal with her other patient. She rides the bus with Maggie and deals with both Maggie and another child while at school.

Lucy had not left yet because she was finishing some charting. She helped me get Maggie ready to go to school. Maggie was so happy and laughing so hard at us running around like chickens with our head s cut off. Lucy had already done the feeding and diapering, which takes the longest amount of time. She changed Maggie out of her jammies while I filled the oxygen tank, programmed her talker, found the tray and pole and loaded up the suction machine and a bag of supplies.

I loaded Maggie and her gear into the van and took off for Mission High. Maggie was about 30 minutes late for school, but she was so delighted because she LOVES school and the fervor of getting there just added to her joy. She will be a tired girl this afternoon, that is for sure. I am going to have to go get her too because Janice’s car is at school and she cannot ride the bus with Maggie. That is fine. Maggie can get the additional joy of riding the bus tomorrow. You may think that is sarcasm, but it is not. Maggie thinks riding the bus is hilarious.

Suddenly I have five free hours. As soon as my blood pressure comes back down to earth, I am going to enjoy it.

Happy New Year 2010

Hope everyone has a wonderful 2010.

Maggie and I spent New Years Day just hanging out and wanted to say Hello!