Aren't you glad you asked me here...

Yesterday I had the opportunity to participate on a panel with two other moms. All three of us lost a child in the last year and the panel was part of a two day course at UCSF for medical providers on end of life issues. As the day approached, I was really questioning my decision to do this and kind of dreading it. But I am impressed that these health care providers want to hear from families. There were about 50 medical people taking the course, mostly nurses. Each of the three moms on the panel recognized one or two people who had worked with our kids.

I'm not going to lie. That was a heavy 90 minutes.

I think there were times when everyone in the room was crying. We discussed the end of life issues involving out own children and what the staff did right or wrong what could have been done better . They want to get things right, even when they can't fix the medical issues.

Though it wasn't specifically applicable to what actually happened at the end of Maggie's life, I took advantage of the opportunity to address some of the disability bias she had experienced in the medical world at other times she was in medical peril. I felt I owed that to Maggie and to her disabled peers. I cautioned the audience to treat their disabled patients with the same respect as the non disabled and to make medical decisions solely on medical grounds, not on unrelated disabilities a patient might have.

I told them about the surgeon refusing to do a relatively simple procedure on Maggie and then saying right in front of Maggie, "You didn't expect her to live forever, did you?*"  I told them about doctors asking me how much intervention I wanted for her for a given malady that required nothing more than simple antibiotics. I told them about reminding some doctors they would never ask these questions if I brought in one of my sons with the exact same symptoms.  I told them that the subject of a DNR (do not resuscitate) is broached far sooner with a disabled patient than their non disabled peers. I also told them that  while "quality of life" is a real issue for medical personnel to consider in some cases, that it is open to judgement and bias and is a frightening slippery slope for the disabled and their families. I told them that many of the parents of Maggie's peers had been told to institutionalize their children because they would be vegetables. (None did and their children are thriving.) I told them to be aware of the bias against the disabled that is so prevalent in society and especially in the medical world. I told them children and families can adapt to anything - we are proof of that - and that they have to live the lives they are given in the best way they can. The medical world can and should help that to happen, not sit in judgement about the quality of those lives.

I didn't plan on saying any of that. I felt like Maggie was sitting on my shoulder saying, "mom, don't forget this and this, and what about that." And when it was over I was glad I participated and received a lot of positive feedback from the audience.

Of course those willing to take a two day class on this topic probably are the last 50 people who needed to hear it, but I was glad I got to say those things anyway.

All of the examples I gave really happened to Maggie in her life, but did not happen in her final days. There was no question about how that was handled and I told them that too.  The circumstances of Maggie's final days were different from those of the children of the other two panelists. It is likely that every single one is different, which makes it that much more difficult for the professionals to find right answers. What works for one family in one situation might not work at all for another.  Still each of the three of us believed that the personnel helped to make the worst days of our lives more bearable.


__________

* this was in 2011. We went to another doctor who performed the simple procedure, fixed the problem and allowed Maggie to enjoy the healthiest two years of her life. In fact she never spent another night in the hospital after that procedure until the day she died.

Red Tape for $500 Alex

Medical drama for Maggie.  She's fine, but she had to have a brain scan on Monday. It was clear.

I dealt with some of the best specialties available, anesthesia, post anesthesia care, neurosurgeons. But no one could help with with a HEALTH issue. Perphap medicine is a bit too specialized. No one can address the whole PATIENT. And when you have a Maggie, with multiple problems, I need someone to think about the whole person, not just their specific specialty.

Maggie had to be anesthetized for the scan because she cannot stay still. She was out for about 5 minutes, if that. Even though it was short,  they had to send her to the recovery room. That was a first - generally they just let her wake up and I take her. Maybe they used different anesthesia. No one could explain the change - why would I want to know?  I'm only the mother.

While in the recovery room she developed a separate, unrelated but acute and dramatic issue, one that required medical attention. Good thing I was already in the hospital, or so I thought. I quickly called the nurse who looked very alarmed and asked if this had happened before. I told her it had once before but she was already an inpatient at the time.  The nurse looked through Maggie's paperwork and said "But that's not what she's here for." Right, this is a new problem.  "Then I suggest you call your primary care doctor immediately."

I was dumbfounded. I'm sitting in a hospital, Maggie is bleeding from places she should not be and I can't get help.

My primary care doc is at a different location. We had an appointment with the neurosurgeons after the scan and I could deal with everything at this place. I said perhaps you should call someone who can help her now  and the said I really don't know who to call. I gave her the name and department of the doctor who would handle this problem but it wasn't going to happen. I had to leave Maggie in the recovery room to go out into the hallway to call the other specialist's office to get the test ordered. (no cell reception in the recovery room). Even that office  were reluctant to do it becasue they could not fit Maggiein  that day and would have to charge for an office visit. I said, I have already collected the sample, I just need an order for it to go to the lab.  Done - reluctantly, but done.

Now it's been 72 hours since that happened and I still haven't heard form ANYONE up there about this. I called my pediatrician (and good friend) less than 24 hours after the tests who got the results and started the antibiotic immediately.  Maggie has now been on antibiotics for 48 hours, not that anyone at the hospital knows that. By the time the specialists deal with this Maggie will be an old woman. If they ever heard this story they would shrug and say , well it all worked out. Yeah - no thanks to you or anyone else up there.

I get that specialized medicine is necessary. In fact I know the specialists have saved Maggie's life on numerous occasions. But some common sense should be injected into the equation at some point. Should I have to machete my way through red tape to get Maggie what she needs? 

Just Dance!

A voice yelling my name at 4AM is a difficult way to start the day. Miss Maggie decided to yank out her tracheostomy tube in the middle of the night. I heard the yell and instantly bounded down the stairs, or so I thought. When I arrived I learned that the nurse had been yelling for 10 minutes. (why she didn't use the extra telephone line, I don't know).  She did get the old one back in. so Maggie was safe, but she could not get the supplies she needed to replace it and tie it around her neck. I did that in about 10 minutes and went back upstairs to bed. It was hard to go back to sleep with the adrenaline pumping like that.

This is not an unusual occurrence, in fact if you've read these posts for any amount of time, you've seen the same story before. Unusual or not, it's jarring and not something you get used to. This incident and so many others are examples of Maggie's fragility and tenuous grip on health. Even when the adrenaline slows down after an incident like this, the reality of Maggie's situation creeps back into my mind.

No one in this house lives life half way, including Maggie. You have to LIVE your life. Yes, Maggie has numerous life threatening conditions, but she lives her life to its fullest potential all the time. Sometimes folks are afraid of Maggie's health issues and we try to set minds at east as much as possible without denying the reality of her situation. 

 Recently one of the professionals working with her expressed concern about Maggie's rapid change in status. She's right to be concerned, and we have to be wise, but I don't want fear to prevent Maggie from living her life. I turned to her and said kindly and simply, "She's dancing on the edge of a cliff. Let her dance."

I don't know where it came from, but that image has stuck with me ever since. The cliff is always there, we can't ignore it and we have to respect it, but we really can't do anything about it either. I like the image a lot. In fact as I lay awake this morning and some of that fear and dread started creeping in, the image comforted me.

 Forget that hackneyed "Glass half full" analogy. I'm sticking with this one. Maggie  is dancing away and we can either watch the dance or watch the edge. I'll take the dance, thank you.

I have to add this picture because after I wrote this I remembered this picture of Steve at the top of Half Dome Last year. I think this may be where I got that image. Maggie gets her dancing ability form her dad. My wildest activity is typing fast.

    

X-Ray Vision

Maggie had to have x-rays taken yesterday. It was time to get updated films to see how bad her scoliosis is. We already know she has some, and it is time to see if the curve in her spine is increasing. This was requested/required by the doctor at California Children’s Services and it makes good sense to have the information.  They requested it at least six months ago and when Maggie went back for her semi-annual checkup last week, they noted they never received it. “Oh,” I said sheepishly, “that’s because I never did it.”  Maggie has so many appointments and requires so many tests that it is hard to gear up and follow through for something done on a prophylactic basis, even if it makes good sense.

I want to be compliant and get the docs what they need, but there are a couple of reasons for lack of motivation and the delay in getting these tests completed.  For one thing, no matter what the x-rays show, Maggie is not a candidate for the scoliosis surgery. It is an amazing surgery and can make a huge difference in a kid’s life, but not Maggie.  She could not handle the surgery; and even if she made it through that, the recovery would be impossible. Another factor in the delay: though not painful, getting x-rays done on Maggie is HARD WORK.

Yesterday was no exception.

I have written about this before. The difficulty is that the technicians have no idea how to accommodate her disabilities.  Therefore, they simply ignore them and pretend everything is fine. Yesterday they told me Maggie was supposed to sit in a chair turned sideways with her back to the x-ray plate. English was not the first language for either of the two women dealing with us. They both spoke English fine, but their choice of phrases was both insistent and inartful.  

The woman in charge said, Oh, I remember you Mom, you very helpful. That good. We need help with this girl.” You tell her to sit over there and stay still. She have to stay very still”

Me: “Did you hear that Maggie?”...  (waits) “Ok, that’s just not going to happen.  She cannot sit in that chair and she cannot stay still.”

X-ray tech: It’s ok, tell her she only have to sit there and stay still for a minute. It will take longer if we do it on the table.

Me: well, she’s right here. She can hear you perfectly fine, and I can tell her anything you want, but that’s not going to make it happen. We have to use the table

Maggie’s cerebral palsy causes motor impairment. She cannot walk or stand at all and cannot even sit up on her own, partly because her trunk is so weak.She falls over immediately and it frightens her terribly.  In addition to that, or perhaps more specifically, she has neurological movement disorders including a combination of dystonia, chorea and athetosis (together known as choreoathetosis).These are three different types of involuntary movements.Suffice it to say Maggie is a girl on the move. Her body is never fully at rest unless she is in a very deep sleep.  She cannot stop moving involuntarily and cannot use her motor functions in any meaningful way.*

None of this had any effect on this tech who has worked with her before.

Tech: "No you can hold her up, just one side and you tell her to keep her legs just like this." (what she was describing was completely impossible)

Me:” I cannot hold her up, hold her in position, keep her legs the way you want them, keep the lead aprons on her and me and not be in the picture.  And I don’t think anyone is interested in my bones.”

Tech: Ignoring everything I said, “you tell her stay still.’  

Me: “Maggie, stay still.”  Maggie laughs uncontrollably and waves her arms around like crazy. I looked back at them “That is impossible. If one of you wants to try it, that's fine with me, but I am not willing to do that. (they didn't because they didn't want to be exposed to the radiation - I, however, did not get a choice.) Finally I said, "whatever time we would have saved has been wasted by this conversation.”

We used the table and no less than 6 times, the woman said how much easier it would have been in the chair. I ignored her five times. On the 6^th one I said, impatiently – “forget the chair, the chair is impossible for her, that ship has sailed, let’s just finish this.” She still said it three more times. 

When the last picture was taken I put Maggie back in the chair. Only when she was completely strapped in did they realize the last picture did not get the tailbone and they had to do it again. I told them “Maggie doesn’t have a tail bone” (which is true). They looked at each other as though they were trying to translate what I said. “Honestly, you can retake the picture, but you will not find a tailbone.” 

 The woman then said in perfect English, “then we REALLY need to get a picture.”

 I smiled. Of course they were right, but it was fun to shake them out of their comfort zone a little bit. And it was fascinating how the English improved. The whole chair/table debate was O V E R.  

*The fact that she is so good at using her talker is amazing and credit goes to her team of teachers and therapists who figured out how to harness this movement and impairment in a way that works for her.  

  

  

Shouder and sixteen!

Survived surgery. I haven't even taken a pain pill since the half one I took before bed last night. (That may change soon, though.) This pain is more tolerable than the pain I was in before the surgery AND it will improve everyday!


My sister Ellen was incredible yesterday. She was here at 6AM and stayed through the whole thing. She and Steve got me home around 2 and she stayed until about 4. She took the day off to care for me and she brought a couple of meals!. This was a busman's holiday for her. She's a nurse in a shoulder surgery clinic in Sana Rosa. I strongly considered going up there for this surgerym but it's an hour away and it just added another layer of complexity to my overly complex life. I got the best of both worlds, she came to me!

Today is Maggie's actual sweet 16th. She remains amazing!!!!!!!!!!! 
pictures from party were posted Monday!

typing one handed and signing off and heading for the pain pills.

Dog gone it

Something someone said about allergies brought this story to mind:

A few years ago, Maggie was in the hospital for one of those long stretches – maybe three weeks. Those are hard on Maggie, of course, but they are also tough on the entire family. Out home life is completely disrupted because I stay with Maggie the entire time. The boys, who were still at home had to adjust to a house without mom and generally without dad too. Steve came home to sleep and usually fed the boys, but between work and the hospital, he was not at home very much.


Of course, the boys worried about Maggie, but these hospitalizations had become routine for all of us. There were certainly times Maggie was in grave danger, but we only told the boys when it was absolutely necessary. We did not want to alarm them prematurely or (God willing) unnecessarily.

They spent a fair amount of time visiting in the hospital as well. On one visit, Eddie was laying at the foot of Maggie’s bed reading a magazine when the young resident came in with some results of an allergy test. Maggie has multiple food and medication allergies, which we already knew about, but this was the test for allergens in the environment. Turns out she has a lot of those too. Cats, dogs, mice, dust etc

Her allergy numbers for dogs was really high,.(And yes we had a dog then and still do.)The young doctor, being very thoughtful, did not want to say this in front of Maggie’s brother. Rather than give the information directly, he just cited the numbers allowing us to draw our own conclusions. Presumably he figured Eddie wasn’t paying sufficient attention or wasn’t going to catch the gist of what he was saying. What he didn’t realize is that my boys spend a lot of time in hospitals and can understand doctor speak very well.

Eddie whipped his head around and said, “Maggie’s allergic to dogs??!!??”

The resident looked very uncomfortable to be part of this moment when a kid learned that his sick sister might mean we had to get rid of the dog..

I said to Eddie evenly, “looks like she is”

Eddie went right back to his magazine and said “Then Maggie’s going to have to move”

I just laughed. It was never really an issue. We use life as a measure, not just a test result. We have to or Maggie would live in a bubble. Maggie had peacefully coexisted with the dog since she was about three years old. Having this test result information was not going to change anything. Eddie knew that, I knew that, even Maggie knew that, but that kind young doctor looked very confused.

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.

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.

Is there a doctor in the house?

Raising Maggie with all her medical issues has some distinct advantages. I am an excellent diagnostician. Really. Maggie can blink the wrong way and I know instantly what is wrong and zoom her off to the hospital. 99% of the time I’m right, based on nothing more than instinct. Doctors who initially dismiss my concerns as simply those of a nervous mother inevitably say, “good job mom” when it turns out my instincts are right again. Happily I’m losing that skill a little bit because Maggie is so much healthier than she ever was before.

I can tell you this, though – that sharp instinct was not maternal, per se. It was something that kicked in only for Maggie, not necessarily for the boys. Maggie’s life and death situations honed my responses to such a fine point , that I often overlooked the bumps and scrapes of everyday childhood. None of those compared to rushing off to the hospital for a neurosurgery. I guess I was something of a specialist but couldn’t hack the general practice.


As I my boys can tell you, if they weren’t bleeding or on fire, they got zero attention from me for medical issues.


The best example of this happened in 2007. That was a rough year for us. My dad died in January of that year and then in March, Maggie became very ill and spent over three weeks in the hospital. When she came out she had the trach and her care went from complicated to ridiculous. There were numerous complications and emergency trips back to the hospital after that and things have really never been the same since.


In the last week of August of 2007 Tim had just started his senior year of high school. He complained about a stomach ache and I ignored him. He complained the next day and I said, without even looking up, “it’s probably just the start of school and the change in your schedule.”
In the middle of the night on Thursday of that week he came into my room doubled over saying in a desperate voice “You’ve got to help me.” Allright. I got up and went downstairs with him and gave him a glass of water. Maggie’s nurse was here and said, “Sally, you’ve got to take this boy into the hospital.” I said “ok” but didn’t really share her concern.


Because I spend a lot of time in Emergency rooms, I prepared myself for a long stay. I made a pot of coffee and gathered the crossword puzzle and other parts of the paper I hadn’t read. The nurse was pacing nervously and Tim was clearly uncomfortable. Steve stayed behind to deal with Maggie in the morning and finally we left for the hospital. I still felt like I was placating the nurse and Tim.

Once there, it took about five minutes to diagnose appendicitis.

Yeah. I felt pretty bad. I apologized to Tim over and over. He was on pain meds until his surgery several hours later. Once the pain was gone, he didn’t care.

It has actually become something of a family joke. Tim told Eddie not to worry if there is an emergency and he gets real sick, mom will be right there with a glass of water.


Hey, it's the least I can do.

Thankful- November 4 another beautiful day in San Francisco. I'm thankful Tim is taking the car today so I have an excuse to walke the dog in the park.

Big Al

My husband often makes fun of me because I peruse the obituaries in the newspaper every day. He calls it the Irish Sporting Green (or sports page for those of you who didn’t grow up with the SF Chronicle – it’s actually green) It’s a habit I developed long ago. It is amazing how often I see a name I recognize, usually someone distant. If you are close to the person, you don’t need to read it in the paper because you already know.

Today was different. I read that someone died who remains very important to me, even though I have not seen or talked to him in a few years.

His name is Dr. Al deLorimier. I met him about 12 hours after Maggie was born. He was a pediatric surgeon, not just any pediatric surgeon, but one very well known all over the world. Maggie was born with so many problems and needed immediate surgery to survive. Our pediatrician told us Dr. DeLorimier was the best. He had to come over from UCSF (Maggie was born at a different hospital) and everyone was excited that he was coming. Several of the nurses in the NICU had worked with him over the years and everybody knew who he was.

We waited anxiously for this great guy to arrive. We put him on a pedestal based on all the wonderful things we heard. He was going to save our new baby girl. I asked a nurse when the surgery would start and she said, “ I’m not sure, no one has heard from Big Al yet. “ Steve and I looked at each other. This great surgeon – one of the best in the world -- was “Big Al.” I pictured a guy wearing greasy coveralls in a garage and Steve pictured Al Capone. Neither image was particularly comforting. The pedestal shook a little bit.

Then he walked in. Dr. deLorimier was tall and handsome and completely in charge, but didn’t have an ounce of arrogance. He was Big Al. He talked to us about what he had to do, drew pictures of what Maggie’s anatomy looked like and what it was supposed to look like. He calmed our fears and went to work. I asked how long the surgery would be and he said simply “I don’t look at the clock.” It was the perfect answer and, to this day, I think of that every time Maggie is in the hospital. I can ignore the time because it just doesn’t matter.

Dr. deLorimier operated on Maggie for about 5 hours that day and at least 12 additional times after that. He treated Maggie with incredible respect; he treated her as a person, not as a baby and certainly not as a baby with problems. He also treated us with respect and made himself available to assist us in more ways than I could ever recount. He intervened with insurance companies, and other doctors. His staff, including his wife, was accommodating and helpful. I had his home phone number and even after he retired, I called him for advice once or twice. This just doesn’t happen. He knew Maggie’s unusual anatomy better than anyone, because he had seen every part of it; and when doctors wouldn’t listen to me he talked to them about why Maggie had to be treated differently.

He also adored Maggie. As a mom, you just have to love a guy who loves your baby. He probably made that connection with a lot of patients and their families, but we always felt special. Of course, most people do not get to know their surgeon quite as well as we did. Most kids do not need repeated surgeries like Maggie did.

There is no way to describe what this man meant to us. Dr. DeLorimier saved my daughter’s life and he did it over and over again. He and her pediatrician, Eileen Aicardi, are the reasons Maggie survived those first few years. They did their jobs better than anyone else could have and taught me how to do mine. Dr. DeLorimier retired when Maggie was about two and a half but he operated on her at least 13 times in those 30 months. He owned a winery and went from saving the lives of children to improving the lives of adults. We visited him at his winery a couple of times and still exchanged Christmas cards but I have not seen on talked to him in several years now. He was never far from my heart, though.

I wish his family, and especially his wife Sandy, well in this difficult time. He was a great man. He was a great surgeon. In this house (and probably hundreds of others) he has a very special place, and always will.

Clean the what, now?

Brisco is the family dog. He is 11 and may be the greatest dog in the world. Happily, Brisco the wonder dog is better. I don't think he posted about his problem, but it is resolved.

He had a rather delicate problem. I believe the official diagnosis was ruptured anal gland. (YEOWCH!) I didn't run right to the vet. This dog never has any medical problems. Other than his shots, I think he's only been to the vet three times in his life, I considered whether or not this was a problem for a day or so. The dog was acting fine, but I was not comfortable with things so in we went. It was probably already getting better by the time I took him in , but I had to be sure.

It was not an emergency visit, yet it still cost $395 (ZOMG!) The office visit was a mere $53, the blood tests (all negative) were $190 and the medicine was and other $130+. As I paid the woman at the desk she asked if I wanted to make a donation for the shelter upstairs. I smiled and said, "I think I just did."

The pharmacy tech instructed me how to give the anti-biotics. Then she gave me a small vial of a blue liquid and instructed me to dilute it 10X with water and then gently spray the "anal area" a few times a day and then wipe it to keep it clean.

I'm sorry, spray the what? where?

This 1 oz magic bottle of blue butt relief cost $23. My husband was sure it was windex. (He may be right)

As I drove home from the vet with a sad dog, and an empty wallet I carefully considered the situation.

It is not often that I feel overwhelmed by my situation, but at that moment I did. I said to the Heavens: "You know, I have a 15 year old daughter whose diaper I have to change 8-10 times a day and I'm OK with that.. I don't complain about that. It's part of the deal, I get that. But I have to draw the line at the dog."

I stood my ground. The magic blue butt relief sits on the counter. It was never opened. Brisco recovered

I'm willing to re-sell it cheap. Even if you don't have the same problem, your windows will sparkle.

Multi-taskin mama

Every mother has to multi-task. In fact, I’ll bet the term was invented after watching a mom handle kids, her boss and the dog while getting dinner on the table for a dinner party. It’s exhausting to be going in so many different directions at the same time. In that respect, my life is very much like that of every other mother. It’s just that the tasks themselves are different. I can hold a feeding tube, answer the phone, suction the trach and clean out the dishwasher all at the same time. What can I say? It’s an art form.

Yesterday after Maggie’s test, I was waiting for the van to come up from the garage. UCSF has valet parking for no charge. It is a wonderful service because the design of that parking structure does not consider the amount of room one needs to unload a wheelchair. There is just enough room to get the lift down, but apparently the designers forgot that the chair actually has to come off the lift and turn. That’s difficult to do with a large vehicle parked next to you. Needless to say, I take advantage of the valet service whenever I can.
For the first time ever, they forgot us. I gave them my ticket and we were left standing there for over 20 minutes. When I asked one of the valet’s “uhhh,what’s the story with my car” he just said, “OMG, are you still here?” There is so much activity there that they just didn’t notice. I was talking to various people I recognized and wasn’t bugging them either. Maggie looks pretty helpless out there and the wind was whipping. Once they realized their mistake they felt terrible. (Maggie was fine). He sent one of the guy running to get it.

Just as the van finally pulled up I heard, “Hello Ms. McDonald, Hello Maggie” I turned to see Dr. G, her neurosurgeon, approaching us. I ran into him the other day in pre-op as well and he wanted to know how Maggie had done in the procedure. He’s a very nice guy and takes a great interest in Maggie, who he has operated on countless times. As I started filling him in the valet came around and started talking in my other ear. “I left the car running for you.” I paused from talking to the neurosurgeon and said to the valet, “No, I need the key so I can get her in the van.”

Dr. G continued speaking. I pressed the button on the key and the lift started to unfold. I explained the problems Maggie had encountered in the hospital last week. Of course my lift needs repair. It gets stuck halfway down if you don’t catch it and guide it down. This is something I do automatically. Without a break in my story, I quickly turned Maggie’s chair around, caught the lift with my foot and guided it down. The neurosurgeon just stopped and looked at me saying “wow, you’ve got a lot going on.”

I wanted to say, “Hey, it ain’t brain surgery.” It was my golden chance to say that to a brain surgeon, but I didn’t do it. The van was blocking others, and there was a cab honking. I had to load her up while I shot the cabbie a dirty look. So I just grinned at him and said “gotta go, hope we don’t see you too soon!”

So much to do, so little time.

Medical Monday

wow, Monday was a medically involved day.

We started the day back at the hospital for a previously scheduled test. No drama this time, just an upper GI, which for Maggieis a piece of cake. She doesn't even have to drink the stuff. They just put it in her stomach through the feeding tube. Everything seems to be working reasonably well, though I'm sure there's some little surprise awaiting us. The radiologist said he needed to "study" and "analyze" the films thoroughly. I've been around doctors enough to know that means he sees SOMETHING but wants Maggie's own docs to tell me. That's fine, because she's doing perfectly well and any "problem" will be academic only.

We came home and were heading up in the little elevator we have in the back yard. This thing just fits Maggie's wheelchair, but she can't be in it by herself, so I have to squeeze my ample butt in there. It's like a game of twister. I have to stand on tip toes to get the door closed while holding the button to keep the lift moving and I'm leaning across Maggie to do that. It's a slow ride to the deck outside her room. About 1/3 of the way up I heard a noise and watched as her trach popped out of her neck. The thing broke and was completely out and I'm balanced like a wanna be gymnast trying to keep the lift moving. No one else is home, of course.

There are procedures one is supposed to follow when this happens. These procedures are written by people who live in sterile laboratories and have perfect control of every situation. This is not the world I live in. I let go of the button and just shoved the broken trach back into place. Now I had to hold that in place and still get the other 2/3 of the way to the top. I switch hands. (right hand RED!) and contort to make it happen. I now have to get the door open and get her into the house driving the chair with one hand and holding the trach in place with the other. Mission accomplished, again.

If the lab people I described were watching, they would have fainted. We are several standard deviations away from sterile at this point. I knew Maggies' nurse would arrive momentarily and this woman is like clockwork, so I just stood there holding it. Changing the trach and threading a new one takes three hands.I have done it alone, but it's safer not to so I just waited a minute. She arrived right on time and we made the change.

Two hours later the new one broke and we did the whole thing again. This time, though, she was lying in her bed, so the drama wan't there. Maggie loves to yank on the ties that keep the trach in place and has successfully broken several of them. Her pulmonologist says she's his only patient that does this (I couldn't be prouder). The second one probably broke from wear, though, so I cannot blame it on the Magster this time.

We finished the procedure for the second time and headed off to another appointment.

Now, alls quiet on the western front. What excitement awaits us this evening??? Not my problem. I'm going out to dinner with some friends....

Teach Your Doctors Well

Maggie is home again. Woo Hoo! Thanks to all of you for the good wishes.

They changed her to oral antibiotics and sent her home. She is really not very sick. Apparently the broncosopy she had on Wednesday just overwhelmed her. Thursday was rough, breathing wise, and after the chest xray showed infiltrates, the pulmonologist admitted her. She had a rough evening on Thursday, but slept well and was much better on Friday. I know from experience if you don't get out of the hospital by noon Friday, you are stuck until Monday. I started lobbying hard, but it really didn't take much to convince anyone.

Maggie kept busy working the controls on the bed at 2AM. She kept trying to make it move but it was hard work for her. Either she couldn't isolate the finger to hit the button or she couldn't press the button hard enough. She is concentrating in this picture, not sleeping. Once in a while she would get the bed to move and then she could not stop laughing. This is when I knew she didn't need to be there.

I had a huge fight with two young residents on Thursday night. July is a bad time to go to a teaching hospital. All the new docs start on July 1. Not only are the new green doctors a bit over anxious, there are the newly promoted 2nd and 3rd year residents who are preening for the new docs.

It felt like the more senior resident was conducting a class for the younger doc entitled, "I will show you how to deal with a parent." Perhaps her heavy handed techniques which included doses of parental guilt and scare tactics work on some parents. Me? Not so much. I changed the curriculum of that class a little bit. Hey, it's a teaching hospital, I was just doing my part.

My husband says after I did my part those two residents are reconsidering their career choices.
I am Maggie's voice - and it turns out she has a REALLY big mouth.

P.S. Shout out to Junior, one of my loyal readers, who IS still inthe hospital with pneumonia. Get well, my young friend. Try moving the bed, it apparently has healing powers.

Alls Well

Thanks to everyone for the good wishes. I was growing increasingly nervous as the day went on. We are home - it's just before 9:00PM, so it was only 6 hours total which is not bad.
The procedure started about 20 minutes late - I was ready for a couple of hours, so that was a nice surprise. Things went about as expected. We didn't get terrible news, which is a huge relief, but things have definitely deterioriated in the last year. Why? Who knows? Some cultures and the test Monday will tell us that. Next steps? Stay the course unless the cultures show something freaky.
I have been pushing for this test for several months. In March (4 months ago!) Maggie swallowed the tip of a syringe. I wrote about it when it happened. Maggie World: No tip required
It never reappeared. We searched for weeks and I called over and over again. The GI doc was sure I had just missed it. The pulmonologist was concerned enough that they ordered a chest x-ray in May, (which I also wrote about Maggie World: Lucy and Ethel) but it didn't show up. They didn't expect to be able to SEE it because it's rubber, but they could tell nothing was plugged off either.
My continued insistence that symptoms were present finally got them to schedule this but the syringe tip alone was not enough. These pesky symptoms had to be investigated. The GI doc told me in pre op he would NOT find that syringe. I said that's fine with me, I don't want it to be in there.
Of course it was there. Exactly where I said it would be - stuck in her esophagus. In fact it was acting as a perfect plug preventing secretions from dropping down into the stomach backing up into her mouth and probably causing her pulmonary symptoms as well. Hmmm. Perhaps they should listen to moms. I did have some basis for this. She swallowed a tooth once before and they had to get it out of her esophagus months later. Her body doesn't work right and things can't go down (hence the feeding tube). That was an “incidental find”, it wasn't causing any symptoms. It was simply the most expensive tooth extraction in history. The GI doc came out of the OR with the thing in a specimen jar and said “You were right, thanks for staying on us”
If that's the root of the problem, she may get better without any more trouble. If she is aspirating, though, as we all suspect she it, we will have a road ahead yet.
But we're back and she's trying to pull her oxygen off and she's driving Steve crazy, so I better go.

Out and About

Maggie finished summer school on Friday. That means I have to find some way to keep her entertained every day for the next month. The nurse still comes in the afternoon, but generally, Maggie stays at home when the nurse is here. Therefore, I need to find activities and outings for the mornings or Maggie will not get out at all.

It really doesn't matter what we do, it's just breaking up the monotony of the day. We will have some fun outings and some not so fun. Some days we are meeting up with her former (sob) teacher to go for a walk and keep Maggie sharp for her transition to high school. (fun) Some of those days will be taken up with medical appointments.(not fun) Today is both. Maggie has some tests at the hospital late this afternoon. We had already planned a walk with Teacher Joe at noon and we are staying that course. Maggie has to go without food all day before getting anesthesia, so keeping her entertained is VERY important today.

Yesterday we had a different kind of outing. I offered to take my aunt to Trader Joes. Maggie loves to shop and I figured that would be fun for her and get the shopping done at the same time. That means a ride downtown, interacting with my aunt and spending time in Trader Joes with its music and brightly colored signs. This particular Trader Joes is near Fisherman’s Wharf, so there are lots of interesting people around too.

You may recall my aunt recently moved home from the assisted living facility. Despite the move, she still needs assistance. She is still regaining strength and her walking is still shaky. Of course SHE doesn’t think she needs assistance, which makes things more difficult. It wasn’t until I awoke on Tuesday morning, perhaps three hours before the scheduled trip that I realized I could not do all of this alone. How could I get her through the grocery store while pushing Maggie’s chair and pulling the basket. I would not have any way to assist her; both arms would be engaged. I called her to see if we were still on and was very relieved when, before I could even say a word, she suggested she bring her walker. Yes! That is an excellent idea.

When we arrived at the store, she considered leaving the walker in the car and relying on the store basket. Noooo. Let’s go with Plan A. I parked in a handicapped spot – never in my life feeling more justified in using it. In fact, I could have honestly taken two and felt ok about that. The wheelchair lift needs some repairs – things that are supposed to work automatically currently require manual control. It’s no big deal but it probably takes and extra minute or so to get out of the car. I was running around the car to release the wheelchair lock and wondered if Auntie was swaying or if that was my imagination. Thank God for that walker.

As you would expect, the handicapped parking spot is very close to the entrance. However, it is even closer to the exit. Hence, that was the door for her. I had to go through the entrance with Maggie and open the exit doors so she could enter. I am still not sure why. She went up and down the aisles of the store, albeit slowly, but she would not walk the five steps to the entrance.
We shopped. People gawked. But really, who could blame them. We were a sight. The older woman with the walker, the middle-aged woman pulling the basket and pushing the wheelchair, stopping ever 30 seconds or so to suction the child in the chair, and Maggie, who was quietly taking the whole scene in.

For some reason a line from “You’ve Got Mail” played in my head. Tom Hanks, a 40-year-old man, is in Meg Ryan’s bookstore with two young children who turn out to be his uncle and his sister. He tries to explain this to Meg Ryan’s’ character and in pure Tom Hanks fashion sums up the situation with a toss of the head and a smile and a clever statement. That statement also summed up our situation today.

We Are … An American family.

End of the Rainbow

Transition day. Summer school ends today. Maggie will move on to high school next month. One of her classmates is also moving to high school, but he will be in a different class. Maggie will not be alone in the new class, however, she will rejoin friends from years past. There just are not any that many students in Maggie’s situation – that is kids with significant physical disabilities who have good cognitive skills. The few that are near her age in the San Francisco School district have generally been in her class since kindergarten. There are a few just older than Maggie who are already in high school and those kids will be back in our world once again.

Not all of the physically involved kids are in special day classes. Those that can handle it are in full inclusion (regular classrooms) so they are not in Maggie’s class. Maggie could not keep up with that and would be miserable. She would make everyone else miserable too. She’s a smart kid, but she needs things to be paced in a certain way and presented so that she can process them visually etc. It is a laborious task, but when it is done correctly, she can really demonstrate her intellect. Often kids as physically involved as Maggie also have significant cognitive impairment. Maggie’s impairment is not significant. I am certain that the damage to her brain and the repeated surgeries and illnesses have affected her cognitive abilities somewhat, but she is a pretty smart chick. She wants to interact and show everyone what she knows.

This past year she was the only one in her class who had the ability to use the communication device. That meant a lot of attention was focused on her, but it also meant she did not have any peers using a similar device. There was plenty of communication with her girlfriends and with the other kids in the class, but having a peer using a similar form of communication challenges her. And she rises to the challenge. In the class she will enter, I know at least two other kids use these devices. Maggie will love that, even if it means she is not the Queen Bee for a while. It may be bumpy getting adjusted, but I am looking past that and expecting a good experience.

Before she gets there, though, we have a month off school. Rather than a week at the beach, we will spend part of it trying to get to the bottom of whatever these medical issues are. The school nurse called again today with more alarming news that necessitated a call to the pulmonologist. They are scheduling the procedure to scope her airway and lungs and her GI tract as well. There are some freaky colors coming out of her various tubes – but she is smiling and generally healthy. Go figga. I have learned from experience, however, that anything strange is a harbinger of problems to come. You cannot ignore it; you have to deal with it.

When they investigate strange occurrences with Maggie, you always get a very strange answer. It inevitably starts with, “Well, Mom*, this is something we’ve never seen before.” And my knees get weak. I can hear the rest now. “All these strange colors…. Maggie seems to actually BE the end of the rainbow. Good news: We found a pot of gold. Bad news, it’s in her right lung. Oh, and she’s allergic to it.”

*cringe – I hate it when they call me mom

Splashdown!

have returned to earth after yesterday’s trip into orbit. The reimbursement check was ready this morning and I went straight to the bank and waited for the teller I know best and she agreed the funds would be available tomorrow so I can pay the nurses. Often times, because the reimbursement amount is significant, the bank holds the check for several days. I have been assured that sufficient funds will clear so that I can make payroll tomorrow. I am relieved, but still fuming. I do not like to be reminded how close we live to the edge.

Maggie’s health remains in question. She made it “all day” at school today. (Note: The summer school ends at noon.) I did get two calls from the nurse because of different things coming out of various tubes. Individually none of them is particularly bad news; collectively, however, they demonstrate Maggie is likely fighting off a bug. I hope that she can make it the last couple of days at summer school. We then have. about five weeks to get her tuned up and back to fighting form.

During the school break, we are trying to schedule a couple of exams under anesthesia. Actually, it would be two exams, by two different specialists, but one anesthesia. That is better for Maggie, but it is difficult to schedule two very busy pediatric specialists for the same day. It will happen, though. Once they look around her lungs and her gut, we may have a better idea why certain symptoms keep happening as they do. If nothing else, it will give Maggie something to write about for her “What I did on my summer vacation” essay.

I need to finish a project because I’m not sure how I will be able to work once she gets out of school. I have been reviewing and gathering ideas for a couple of weeks . I waanted to work on it all week, but yesterday was lost. I really hope there's no more drama with her services because I can't afford to waste any more time.

I have to power through. Maggie better cooperate and stay healthy for the next 72 hours!

Pesky little BUGS

This is a subtle little bug, but I have to admit ignoring it is not working. I do not feel well.

At first, I figured it was psychosomatic. My mom was not feeling well and she needed a thermometer. I went over there with chicken soup and a thermometer on Tuesday and her temp was over 101. She is very good about staying in bed and taking care of herself and she is back on the upswing. When I left there, I thought I felt clammy, but decided that was power of suggestion.

On Wednesday, I walked the dog around Mountain Lake Park and the slight hill seemed insurmountable to me. I was exhausted and I could not figure out why. When I reached the top, I felt fine, so I dismissed that too.

Yesterday I felt great when I got up but as we were heading down the elevator for the bus, I felt nauseous. Hmm, maybe there IS something going on. I decided to lay low yesterday but that was not to be. At 8:30AM, the school nurse called and said Maggie was not well. This nurse is the calmest most professional woman in the world. If she is concerned, I am concerned. When I asked what was going on she described some coughing fits on the bus and then listlessness. She said “I wouldn’t say she’s unresponsive, but…” That was enough for me. I hopped in the car and headed over there to get Maggie.

We were going to have a day of chick flicks and HGTV, but Maggie perked up as soon as we got home and needed more entertainment than that. I had to just power through the malaise. We drove Tim to his final interview (yes he’s employed! can you say venti latte, please?) and shopped at the Safeway until he finished.

It is always a trip to go grocery shopping with Maggie. I push the wheelchair and pull the grocery basket behind me. Navigation is not easy, especially turns. We are an obstacle for other shoppers, who generally give us a wide berth. However, shopping aisles are getting narrower and full of more displays all the time and there is just not very much room for a wheelchair. We are a sight to behold. As I came around one turn, I knocked Maggie into a display of wine. I held my breath as a couple of cases teetered, but happily, they did not fall. (Maggie thought that was hilarious – the only thing better would have been the actual crash.)

Tim joined us as we were finishing up and I asked him to run back to produce to get me an eggplant and he said let me take Maggie. The two of them RACED across the supermarket while I unloaded the groceries onto the belt (dropping a box of raspberries all over the floor in the process). They came back with Maggie out of breath and laughing. I was exhausted.

I managed to steal a nap for about an hour after the nurse arrived and then had to run an errand with Tim in the late afternoon. Today I feel like I was hit by a Mack truck. I am surrendering to this bug and laying low today. Maggie is back in school and I do not expect and calls (fingers crossed).

I actually had plans to go out with the girls tonight but it appears those will have to be shelved. That is a bummer. Because if laughter is the best medicine, that would probably cure me right away.

This BUGS me!

Maggie has had a stubborn infection for over two months, maybe longer. She first tested positive for this particular bug in September. It was back in November and has been with us ever since. Ir it has gone and come back. Is it stubborn or recurrent? Who knows? We have tried six different antibiotics. While she is on them, she is fine. As soon as they stop, the symptoms start again.

I tried several times to convince the docs of this, but it fell on deaf ears. All I heard was “no, she’s just getting one illness (read: “cold”) one after another.” I don’t think so. At this point in caring for Maggie, I do not run to the pulmonologist for a cold.

After the last culture grew the same bacteria AGAIN I left a lengthy message about the pattern we have dealt with over the past 60, 90 120 days. They are paying a little closer attention now. Maggie is on three antibiotics. And right now, she is fine. (Ask me when they finish but that will be 21 days.) We are attacking this bug head on.

On Friday afternoon, the nurse from Pulmonology called and very gently suggested the possibility that the bacteria could be here, in my house. Whaaaa? My first thought was, “ Of course not. We take excellent care of her.” And indeed, we do. But the nurse asked, "How often do you change the tubing?" The bacteria could be living in the tubing, especially the tubing that is wet. Well, we change it regularly, of course. How often is regularly? Uh, every couple of weeks. But not the oxygen tubing. That’s less frequent. Oh, am I supposed to change that too? Oh, should I try every week.?

I agreed to consider the possibility.

I have not thought of anything since.

EWWWWW. Of COURSE, it is possible. And, dare I say, probable. Again, EWWWWW.

So now, we are “CSI, stenotrophomonous.” Where are you little microbe? You can run but you cannot hide. Well, yes you can, but now we are looking. Talk about a needle in a haystack. This is more like a needle in a field of hay, or several needles in a field.

Let me just list the tubes in Maggie room. All are on a sliding scale of possible suspects. No that is too ridiculous; I will categorize them instead. There are several categories:
1) the “not likely” which includes gastrostomy tubes and urinary catheters;
2) the possible, including nebulizer tubing and suction tubing;
3) the very likely, oxygen tubing, mist/corrugated tubing, and
4) the obvious: suction catheters (three different types).

In addition to all of those, there is the water in various containers. The water for the mist and the waterthat we clean the suction stuff in and the containers in which both sits. There is the little bag that works with the mist machine to collect the additional water.

All are on my hit list. And there are probably 15 other things I haven’t considered.

I’m sorry; I know this is too much information. But this is how my brain has been working for the past three days. I am a woman on a mission. I have boiled water, vinegar mix and attitude and I am not afraid to use ANY of them.

Be afraid little bug. Be VERY afraid. Your days are numbered.