The Aftermath

I will write in more detail about Katie’s surgery in an upcoming post, but today, I just want to check in so folks know I’m alive and that we’re maintaining. I wouldn’t say we’re thriving, but we’re not going under, so I count it as a win.

We owe a massive debt of gratitude to the folks behind Baby Toolkit for their absolutely lifesaving gift of Dinner Done!. Not having to worry about food shopping, prepping, or really cleaning up after has been such a blessing and a gift. I strongly recommend searching out similar services in your area and putting their phone number on speed dial. When someone is in a really bad place, this is a gift that can make a HUGE difference in their quality of life as they go through whatever their struggle is.

Katie is doing well, but having a lot of difficulty sleeping. I think part of it is fear, since the last time she went to sleep she woke up to a great deal of pain, but part of it may be residual effects of the anesthesia and the intubation. I know it took me a few weeks to work through the additional air in my system after she was born last year. The only way she will sleep is in her swing and only after she has been held and swayed for a while. P thinks we’re spoiling her; I think she’s been through something hugely traumatic and needs some extra nurturing while she recovers.

Her hair would do a Marine proud. It’s roughly an eighth of an inch all over (except at the actual incision site, which is covered in steri-strips). The first day home she couldn’t roll over or crawl, but by day three she was doing both. Yesterday and today, she was cruising from one piece of furniture to another. Took a couple of tumbles. She cried, but cheered right up. My heart stopped, but all is fine.

She’s eating like a champ and has gained back almost everything she lost post-surgery (she went in at 18 lbs; came out about 16.5 lbs and is now almost back to 18 lbs). This is why they were so adamant that she be strong and healthy, and gain weight prior to surgery. Makes sense now.

Ben has dealt with all of this reasonably well. He was very frightened when he came in the first day. He came running over, very excited, but saw Katie’s head and stopped cold. By yesterday, when my mother came to visit, he explained to his Nana that she “cannot touch Katie’s head” and was reasonably protective of her. He’s saying some things we’ve not heard him say before, but nothing that’s really out of order for a four year old. Although, yesterday, calling Katie “stupid Katie” got him sent to his room to cool off.

I’m ended up turning over the classes I was teaching after a very long weekend of very little sleep. So, I am not working until next week. Well, some course prep, but not much else (except some holdover course design issues, that are in the process of being resolved). So, we’ll spend the next few days off doing things that need doing. Planning for November and December homeschooling. Making new charts for Ben. He likes his routines on charts where he can see them, so I oblige. I have some holiday planning/birthday planning to do.

Katie has her follow up appointment on Monday, where hopefully we can get clarity on when she can start being around people a bit more. We have been in virtual seclusion for over a month now, and we’ll have to decide how much exposure is acceptable and whether we need vaccines for flu and H1N1 or not. I likely can’t have them, but can the rest of them? We don’t know. So you know, I believe strongly in vaccination as it’s a means of protecting people like me who cannot take them — so it’s a wee bit self-serving.

In any event, we’re here. We’re hanging in there. I’ll talk more about the surgery and the immediate following time soon. I still need to process my feelings and thoughts on it a bit more.

And on with the show . . .

After much wrangling and discussion we now have a new set of surgeons and, more importantly, a surgery date. Along with this surgery date, we have a number of other things that we have to do prior to Katie’s surgery.

First, she will have a blood draw for blood typing as soon as I can arrange it. This is to determine initially whether P is compatible so he can do a directed donation if he is. This is the preference for the cranio-facial surgeon. The neurosurgeon indicated that he didn’t care one way or the other.

About a week before the surgery, she will have a pre-op appointment with the cranio-facial surgeon. We will go back over the surgery procedure and what it will entail. This shouldn’t be surprising in any way since we’ve been over all of this so many times.

Next up, Katie has a pre-op physical with Dr. D. I’m quite certain neither of them are looking forward to it. There is a one page form that he will fill out that we will hand carry to the hospital on the day of the surgery. We’re also going to squeeze in Ben’s 4 year old well kid exam. Because we’re homeschooling him, he can delay his shot for a year, which I think is a good thing.

After that, things will ramp up considerably. The day before the surgery we will be dropping the girls off at their vet’s office. Because we will be erratically available, it makes the most sense to get them somewhere that they can be fed and cared for consistently. With Sam’s issues, it’s unfair to ask someone to care for her who isn’t experienced with her sorts of problems. They have a large space for her and that will work. I need to iron a few details out with the office manager regarding how we want to do a couple of things, but that can be done sooner or later.

We are still working on Ben’s care during this. We’re hopeful that will be sorted out in the next day or so. Whatever plan we come up with for him will likely involve getting him settled, at least for a couple of days, with someone who can take care of him during the most difficult parts of Katie’s surgery experience.

After all of the others are settled, we will be taking Katie to the hospital for pre-op lab work. They’ll test her six ways from Sunday and make sure they have blood that is compatible with her (assuming that P’s is not compatible, we will be using the blood bank). We’ll then move into wait mode until the following morning.

Katie is allowed to drink formula until midnight. After midnight, she can have Pedialyte (clear) until 4:30a. After 4:30a, she is not allowed to have anything.

We are to report to the hospital at 5:30a. Presumably, there will be some time with Katie while they’re getting her prepped for surgery. At some point, her head will be shaved, but I don’t know if they plan to do that while we’re with her or not. I know she will have IVs, etc., inserted during this time as well.

She is scheduled for surgery at 7:30a. This could be delayed if there are more pressing situations, but she should go that day if not at that time. Of course, it will be much, much harder to explain to an 11 month old that she can’t eat than it was to explain it to me. I’m not clear about the length of time this surgery will take, but hopefully she’ll be through surgery by sometime in the early afternoon. She will spend at least one night in the PICU because of the nature of the surgery. We have had estimates of everything from three days to seven days as the amount of time that she will likely spend in the hospital. It really depends on her. We’re praying that she recovers quickly and feels well enough to go home quickly.

We know that post-op she is going swell a great deal and that her eyes will be swollen shut for at least a couple of days. I think I’m prepared for this, but I’m not sure. I understand that she’s going to be very frightened and disoriented. I suspect she will also be very clingy and want to be held as much as possible to be reassured that she’s okay and that she doesn’t have to be scared.

We’re currently planning to be in the hospital in shifts, switching off which one of us is with her. The major issue here is that I have work. Unfortunately, school doesn’t stop, so I will be teaching throughout this. Should be interesting at any rate. Fortunately, we’ve found a place to stay that has wireless/ethernet and the hospital also has wireless. This should be workable.

Once Katie is home, she will be kept fairly isolated from others to avoid infection until she gets an all clear from her doctors. This likely means that her birthday party will be postponed, but not canceled. It will likely have implications for Ben’s Halloween, but we’re working on that to see if we can keep from losing the experience for him even if his sister can’t go, too.

Katie will have her first post-op appointment approximately two weeks after the initial surgery. We’ll find out then what they think and what else she may need to do with respect to this. There is a possibility that she will need a second surgery when she is either five or six, but that can’t be determined at this point. We have to see what happens with the bone as she ages.

There are other things: no immunizations for awhile before or after the surgery. Nothing but Tylenol for two weeks prior to the surgery (so we do have a solution if she starts teething again), and she has to avoid illness. This means we’re pretty much living under quarantine for the forseeable future. She needs this surgery and she needs it to go off without a hitch, so this is where we are.

We’re nervous; we’re worried; we’re scared. We have faith and we are praying that she will be okay and that this is a one time deal for her. If you’re looking for something to do for us, please, please pray for a successful outcome for her.

10 Months Ago . . .

my daughter was born. At this point, she was out and they had taken her to be weighed, cleaned up, and all that fun stuff while I was being sewn back together. Actually, first they were taking pictures of my uterus (sigh) and then putting me back together. I have “interesting fibroids.” It’s unfortunate that one of those interesting fibroids tore probably not too long after the photographs.

In any event, Miss Katharine is now ten months old. The tag with her name came yesterday. I wear a necklace that has a tag for each of my children, their first names, and their birth dates. I’ve felt weird the last ten months wearing it without Katie’s tag, but now I don’t feel weird anymore and I’m grateful that the tag got here before her surgery date arrives. Katie is doing a lot of things now. She pulls up to a stand, she crawls, she puts everything in her mouth. She can say Mama, Dada, Baba. These are pretty much all the things she needs to say to get her way right now. And trust me, a more demanding Mama you have never heard. If she thinks she’s being ignored or if she thinks that I should be in front of her, “Mama, Mama, Mama, MAMA” until she gets her way.

I’ve joked many times that Katie is lucky she’s our only daughter as her name is the only girl’s name P and I could agree on. Had Ben been a girl, Katie would have been in big trouble. However, he wasn’t and his name is special for its own reasons, as is Katie’s. Ben’s middle name is Alexander. When my mother called our Aunt Joyce and told her Ben’s full name, my aunt’s response was, “That was Marion’s middle name, too.” Well, yeah, I knew that. I named Ben after Uncle Marion, but I just couldn’t bring myself to use Uncle Marion’s first name. I believe he would have understood. I hope that Ben will be like Uncle Marion — a nicer, more pleasant person, I don’t think I can imagine. He was as generous with his time as I hope to be someday. He was devoted to his mother (let’s hope Ben gets that trait, for sure), and he adored his wife. I loved my Uncle Marion very much and I do miss him. Ironically, and really, I didn’t realize it at the time, we also named Ben after the two male characters in my favorite book as a child, The Crystal Tree. The two boys we’re introduced to in the book are Benjamin and Alexander and they become fast friends. So, perhaps a bit literary as well.

And yes, this is Katie’s post, but I needed to preface a discussion of Katie’s name with that so that you’d see I have a habit of choosing names that have both intentional and accidental significance. In Katie’s case, both of her names have significance to me. I suspect that it is going to come as something of a surprise to someone who sometimes reads this blog to find out that my daughter is named after her, but she is. My sister has a friend named Katherine who I have known since they were both about eight years old. I quite liked Katherine and really admired her determination to be who she wanted to be and her willingness to try new and different things while trying to find herself. I think she grew into an amazing young woman who I am proud still to know. I had decided around her mid-twenties if I ever had a daughter I’d want her to have that same strength, that same fearlessness that I see in my sister’s friend and, after some discussion with P, we agreed that a daughter of ours would bear that name. Admittedly, it’s spelled differently because I’m also a huge Katharine Hepburn fan and it worked for us. Again, ironically, it turns out that the slightly different spelling of my daughter’s name is the same as the spelling for the mother of the lead character in Ellen Emerson White’s White House series of books (it begins with The President’s Daughter.)

Katie’s middle name is for my grandmother, my father’s mother. She was my rock for most of my growing up years and into my young adulthood. It was a severe body blow when she died and I didn’t think I would ever get over it. I don’t know if I’ve “gotten over it” yet, but I don’t find myself sobbing for no apparent reason the way that I used to, and I was able to watch football this past weekend without getting overly melancholy, which was a major accomplishment. But Marie also connects Katie to her other great-grandmother, Mary Margaret, her great Aunt MaryAnn, her Grandma Maria, and her Great-Aunt Marie and a cousin, Mary, too. All of those women were strong. They were fighters. And that’s who I want my daughter to be.

If I hadn’t survived her delivery, P might have been able to explain parts of the reasons for her name when she was older, but he wouldn’t have understood or been able to explain all of the reasons. I had meant to write them down, but I didn’t get around to it. Now I have. Not that I think I’m going anywhere, but all of the deaths of the past year have reminded me, forcefully, that we don’t know how long we’re here and we shouldn’t take for granted that our children will know the stories unless we tell the stories.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: cough variant asthma, chronic hypertension, chronic anxiety, and PTSD (from Katie’s delivery)
2. I was diagnosed with it in the year: 2002 with the first three, the last was late 2008
3. But I had symptoms since: childhood for the asthma. Since college for the anxiety
4. The biggest adjustment I’ve had to make is: shifting from teaching in person to teaching online.
5. Most people assume: that I can do anything and everything because Jerome Bettis played football and Jackie Joyner-Kersee was an amazing athlete.
6. The hardest part about mornings are: remembering to take my medications with the hustle of children and dogs.
7. My favorite medical TV show is: Diagnosis, Murder.
8. A gadget I couldn’t live without is: my nebulizer
9. The hardest part about nights are: getting to sleep. I’m always afraid of waking up in the throes of an asthma attack. It’s the scariest feeling.
10. Each day I take _16_ as needed pills & vitamins. (No comments, please) plus two puffs of advair and albuterol as needed.
11. Regarding alternative treatments I: have not really found any that are viable for me.
12. If I had to choose between an invisible illness or visible I would choose: I don’t think I would change for something more visible. I just wish I could make people understand that there are things you just shouldn’t do around me
13. Regarding working and career: I miss the fact that I don’t see my students in person. I miss teaching books that I love. I miss going to conferences. I haven’t been since Colorado Springs. I spent the whole thing wandering around wheezing.
14. People would be surprised to know: how much I hate leaving my house and being exposed to triggers. I have my asthma under good control as long as I don’t have a lot of exposure.
15. The hardest thing to accept about my new reality has been: how hard it is to do things that I consider normal. I can’t even weed my garden because it stirs up too much pollen and makes it impossibly hard to breathe.
16. Something I never thought I could do with my illness that I did was: travel to a school graduation last year. The last time I did extended travel, I got really sick, so I was worried that this, with all the people in enclosed spaces, was going to do a lot of damage, but it didn’t.
17. The commercials about my illness: make me sad. I can’t do anything and everything and the commercials make it hard for people to understand that.
18. Something I really miss doing since I was diagnosed is: being spontaneous. Everything has to be planned and organized. I have to remember medication whenever I go anywhere.
19. It was really hard to have to give up: being places like church. The enclosed space, lots of people thing is like a breeding ground for illness for me.
20. A new hobby I have taken up since my diagnosis is: I started knitting. It helps me calm down and keep track of my breathing. Particularly good for the anxiety portion of the program.
21. If I could have one day of feeling normal again I would: go to the movies. I haven’t been able to sit in a movie theatre in years. I start wheezing and I have to leave.
22. My illness has taught me: that patience is important. I might not be having a good breathing day today, but tomorrow might be better. I might not be be so stressed or so easily triggered.
23. Want to know a secret? One thing people say that gets under my skin is: You don’t really have asthma. Or, my other favorite, you use asthma as an excuse not to do things.
24. But I love it when people: are considerate and remember that things like perfume trigger me.
25. My favorite motto, scripture, quote that gets me through tough times is: Just keep swimming. (Dory from Finding Nemo.
26. When someone is diagnosed I’d like to tell them: It’s not the end of the world, but it will change your world and the way that you view it.
27. Something that has surprised me about living with an illness is: how much my perspective changed. I always thought that I was good at empathy, but I’ve discovered I wasn’t nearly as good at it as I thought I was.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring things for the baby. After the delivery, I couldn’t do anything and the people who helped in that first two week period really made things so much better. They honestly have no idea how much.
29. I’m involved with Invisible Illness Week because: I don’t look sick when you look at me, but my body knows differently. I want people to know that you just don’t know who might have what by looking at them.
30. The fact that you read this list makes me feel: like you care. Thanks for taking the time .

We Need Health Care Reform

This is not a political issue. This is not a party issue. This is a human issue. Every one of us, insured or uninsured is one major illness away from a catastrophe. No matter how well insured you think you are or how well off you think you are, one major illness could wipe you out. No person should have to go bankrupt in order to preserve his or her life.

I’ve stayed quiet on this for as long as I think is rational, but I can’t stay quiet any longer. Consider this. My insurance company covered the birth of our daughter. They didn’t balk at the extra expenses of more exams because the pregnancy was high risk, but they did refuse to cover the high risk specialist, though they did cover the ultrasounds that he did every month (go figure that one out; we’ll pay for the test, but not for the guy who reads it). They covered the immediate birth of my daughter, no sweat. They attempted to argue every single charge related to my near-fatal complications.

They refused to pay for the second anesthesia on the 17th because it wasn’t “medically necessary” for the purposes of giving birth. It was medically necessary, however, to save my life. That, apparently, was secondary. They argued about the number of units of blood. They argued about the amount of fluid I was given. They argued with the tests run to make sure my kidneys were functioning (a common complication after the surgery I had), and on, and on, and on.

This same insurance company feels I should stop taking the asthma drug that controls my asthma except during extreme situations, and take something that is “similar” — it’s not the same pair of drugs and it doesn’t work the same, and my doctor doesn’t believe we’ll have the same results, but my insurance company argues (and sends me letters monthly) suggesting that it is in my best interests to switch. They believe that I should have no more than 4 migraines in a month and so limit my medication on that front to four pills.

I get that people don’t want the government controlling their health care, but, honestly, your doctor isn’t controlling it now. Your insurance company is and they don’t care about you, your health, or what’s best for you. They care about what’s best for their bottom lines. And that’s no way to care for patients.

I have incredibly weird reactions to drugs. For example, I am severely allergic to Naproxen. Like, throat swelling, can’t breathe, nearly died, allergic. My insurance company doesn’t care about that and frequently tries to insist that the medication that I can take for migraines should be substituted with one that contained Naproxen. So, I pay more in order to stay alive because the only drug I can take is not on their preferred list.

Or, if you want another example, take my daughter. While her life is not threatened by her condition, her eyesight and normal development is. Because of all the screwing around on the part of the insurance company, we are now assured this surgery won’t take place before October 1. Because it won’t, we are now going to be out $4000 plus 20% rather than $3000 plus 20%. It’s going to be hard to absorb that hit, but we can. And the worst of it is that they reset the policy on October 1, but the calculations of our out of pocket expenses gets reset on January 1. It works to their benefit, not ours. This is the result of letting private industry regulate our health care.

Or, you want to argue quality of care? Okay, I can do that, too. My daughter had an outstanding surgeon. One we felt extremely comfortable with and were really happy with having do the surgery. But, because our insurance company won’t cover her, we can’t afford to use her. And remember, even though I needed I high risk specialist for both of my pregnancies, neither insurance company covered that cost, so we had to. We’re fortunate that we could afford to do that. What if we couldn’t afford it? Then what would have happened?

Add to that what I’m seeing with my mother- and father-in-law, both of whom have been hospitalized for nearly a month. A conservative estimate of my mother-in-law’s care? $300,000 to $1 million. My father-in-law’s care will likely be somewhere in the neighborhood of $200,000. They have no insurance and no money. We certainly can’t afford to pay for that (nor are we legally responsible to pay it). So, who pays it? I don’t know. I do know that they will end up bankrupt. I know that my father-in-law, who is a World War II veteran was told at the VA that there’s no help for him there at all.

Finally, P and I lived uninsured for the first five years of our marriage. It was extremely scary and not something I would ever want to do again. But insurance doesn’t fix the fear or save us because insurance isn’t actually there to benefit us. They bet on us. If we’re well, we’re a good risk, but if you get ill or develop a chronic illness, health insurance works against you in every way that it can.

We need a system that protects the people of this country and puts the health and welfare of the people above the cost. We need our doctors to be doctors and not be dictated to by people who read spreadsheets, but who have never set foot in a medical school class. We need a system that is not broken and that allows everyone to receive care pre-existing condition or not without fear of losing their homes, hopes, and dreams.

We need health care reform and we need it now.

Playing Possum

I’ve always been reasonably good at this. Pretending to be asleep to avoid something was an easy way out with my parents for a long time. Now, usually, it only postponed whatever I was trying to avoid, but my mother’s feelings about early mornings and housework, particularly on Saturdays, made me master the skill early and quickly. I have to wonder if we were the only family who divided chores up in what were weird, arbitrary fashions on Saturday so that everyone would be “released” sooner. My dad vacuumed. Easy chore, if you ask me. My mother cleaned bathrooms. Thankless chore, in my opinion. This left dusting and, there must have been a fourth thing because I have a sister and I know she had to clean things, but for the life of me, I cannot remember what the fourth thing was. Dusting wasn’t just dusting the furniture and the knick-knacks, it was also for the baseboards. As in, dusting the baseboards. Yes, I spent many years dusting baseboards, and since this was done weekly, it wasn’t a particularly satisfying task as there was never any dust built up to remove.

I still play possum but it’s now to avoid the two males in my life. I usually wake up when P starts the shower in the morning or when he’s getting himself together for the day. It might be the muttering that he does while he’s getting organized, though he’d never admit that. He usually knows I’m awake. I’ll sneak a quick check of my email account, my twitter account, and so forth. The second I hear the gate on Ben’s room swing, though, I ditch the handheld, close my eyes, and pretend to be asleep. Until very recently, Ben would come in, put his face right up next to me, and call MomMom in his best approximation of a quiet voice (read, you could hear him two states away).

About a week ago, this changed. I realized that I was actually falling back asleep and there was no little voice blaring in my ear to wake me up. Today, I stayed awake, though still with eyes closed to find out what happens now. Today, he got up, ran across the house to peek in my room. Once he determined I was asleep. He told his Sheep that MomMom was still asleep, but they needed breakfast. I popped one eye open to see the kitchen light come on, hear the fridge door open, and the sound of him getting a cup of yogurt for himself. He got out his spoon, settled into his chair and ate his yogurt, all the while keeping up a running commentary with Sheep about the day, what he was eating, what he hoped to eat when MomMom woke up, and so on. I listened for a few minutes and was charmed by both his complete confidence that everything was going to go his way and his attempts to be considerate and let MomMom sleep. He tells Sheep: MomMom is sick right now and she needs her rest, so we’ll be very quiet until she wakes up and can play with us. I did “wake up,” we did play, and a good day is being had by all. Well, so long as I keep taking DayQuil and resting anyway.

The Sandwich

And how I wish I was about to write an ode to food. I would love to be writing about food. In fact, I would give anything to be writing about the wonderful pork chops I made or the grilled cheese sandwich my son ate for lunch. Instead, I’m talking about the sandwich generation, of which I am now a card-carrying member.

The saga began last Tuesday. I was on the phone with P and his work cell phone rang. We said goodbye and I went on with my day for about three minutes. Our phone rang and it was P. The other call had been his mother, she was feeling very sick and needed him to take her to the hospital. I did not see P again until Thursday.

His mother is still with us, but she is very ill. Ill enough that her time in the hospital will likely be measured in weeks, not days, and will involve an incredibly risky surgery from which she is not guaranteed to live, but without she is guaranteed to die. So, we’re moving forward toward a surgery date that keeps getting moved as her condition doesn’t deteriorate and her doctor believes we are gaining ground that will be valuable post-surgery. He’s good and I hope that he’s right about this one. A notable fact about P’s family is that his parents do not have health insurance of any kind. Not for want of arguing on our parts, but they do not have it and that is that.

P’s father has not been well for some time. In my eyes, he exhibits all of the signs of a person with Alzheimer’s disease, but because he refuses to see a doctor for any reason, and believes that we are conspiring against him when we suggest he take an aspirin, there has been no diagnosis. P was stretched to the end of his rope by Wednesday night. His father kept wandering off. P could not keep track of him. They went back to his parents’ house to get some sleep and his father kept waking him up wanting to know who he was and what he was doing in the house.

After some discussion, we agreed that hiring home care for his father was a prudent move because, unsurprisingly, P needs to be working and we have obligations to our children, not the least of them to Katie. The home health care lasted less than twelve hours before P’s dad threw them out of his house and called the police.

During the course of the discussion with the officers, P’s dad made it clear that he didn’t want to see P and he didn’t want P on his property, so P had to abide by those wishes.

In the meantime, we discovered some issues with our insurance and Katie’s upcoming surgery. Issues large enough that the surgery was almost completely derailed. Fortunately, we have good friends who were able to recommend another surgeon who is not a problem for our insurance, so we have an appointment with that person on the 2nd of September. Ideally, surgery for trigonocephaly is completed before the 1st birthday. We are just under 3 months from Katie’s first birthday. I’m hoping we can get this done quickly and settled. I hate that we’ve wasted over two months waiting for people to figure out what they want to do only to discover at the last minute that this is simply not going to happen the way that we thought it would.

However, given the way things have turned out, it’s a blessing that her surgery is not a month from now as we had planned. We planned for September 18. In the current circumstances, P’s mother will not be back in her own house and we are not sure whether P will have enough time to take to be in the hospital with Katie were the surgery to happen then. So, moving it a month later, even, would be a huge bonus for us.

But this is what the sandwich is about. We’re caught between our responsibilities to our children and our responsibilities to P’s parents. How do we integrate a woman who needs quiet and rest into a house with a super-active almost four year old (read that to mean LOUD)? How do we find space for her in our three bedroom house? How do I add her care to the demanding schedule that I already have of children, dogs, house, husband, and work (read students)?

I don’t know. I wish I did know, but I don’t. I wish I could say that I’ve handled all of this super gracefully, but in the interests of the integrity I claim to have, I haven’t. I’ve been difficult and frustrated and seriously pissed off about the reasons this situation is coming about. I called my parents and confirmed that they have insurance, long-term care insurance, and every other freaking thing you can think of to keep this insanity from happening twice.

I have reined in my inner pain in the ass to some degree and have not looked at P and said, “See . . . this is why I insisted on two children. No one person should have to deal with all of this essentially by himself.” However, my inner pain in the ass was not as kind about the dishwasher that died (immediately after the death of the garbage disposal), the code violation we were given, and so on. The garbage disposal now works thanks to one of P’s friends. I am remembering all of the handwashing techniques that I learned when I lived in Auburn (the land of no dishwashers, at least in any house I could find). And we were found in compliance with code as of today and we discovered we have a crank in the neighborhood who is apparently calling in violations on everyone they can. It’s truly charming.

Right now, I’m hanging on by my fingernails and hoping that we will pull through this without losing our minds. It’s hard and it’s painful in many ways, particularly for P. I feel for him and hope that he knows how much I admire his strength in facing an impossible set of circumstances and choices. One man cannot be in four places and having to choose and prioritize is hurting him terribly. Having his daughter turn away from him when he came back after almost 72 hours away was incredibly painful for him. She settled back quickly, but that initial reluctance hurt him.

Long days and hard decisions are facing all of us. Pray for us as we go through these challenging times and remember to talk to your parents about their plans, their insurance, and all that stuff. Keep talking and arguing until they do the things that need to be done. It’s important, and it’s responsible.

Today is my birthday . . .

My son has a book that he adores The Birthday Box by Leslie Patricelli. It’s a great story about a little baby (gender undetermined) who is all excited about getting a box for his/her birthday. Inside the box is a puppy. It’s a nice, gentle story and makes birthdays, even not super exciting ones, seem good.

Today, however, is my real, actual birthday. Not that you would know this by anything that’s going on, but it is. And not only is it my birthday, it’s a milestone birthday. Today, I am 40. I am not upset by this or distressed or anything. I don’t feel like I’ve just crossed some imaginary line that means I will never be what I was or anything.

I had big plans for my birthday. After years of not taking my birthday very seriously, I decided that this year I was going to do what I wanted to do. What I wanted to do was go out with some of my friends, minus my children, then take the kids to Safari Nights at our zoo, and finally, go out to dinner with my husband — by ourselves.

Unfortunately, none of that is going to happen. The immediate reasons involve a health crisis for my mother-in-law which has put my husband in some very difficult situations in the last few days.

I’m not upset about it and I’m thankful that I didn’t let myself get too excited about the plan, but I’m honestly not sure how much more we can take as a family without cracking a bit.

I don’t really even have much else to say right now. Just that we’re very stressed and no part of this is easy. Every time we think we’re out of the woods, something else happens. It would be unbelievable if I heard someone telling the story of the last five days, and I just cannot believe that I’m living it.

When Asthma Doesn’t Seem Like Asthma

Quick. When you think of someone with asthma what do you picture? What do you hear?

For most people the answer is wheezing. They see someone who always seems to struggle for air a bit or whose breathing is audible a lot of the time. My aunt had that kind of asthma. It was scary stuff. She could go from feeling fine to not feeling fine quickly and listening to her struggle to breathe was painful and when you were familiar with her triggers, you took great pains not to trigger an attack.

But my aunt’s asthma is more complicated for me because, it turns out, that I, too, have asthma, even though I’ve never sounded the way she did. I knew about exercise induced asthma and I knew that wasn’t what I had. Exercise and I have always been on somewhat unfamiliar terms (my current attempt at a 30 day challenge, not withstanding). But I always knew I struggled sometimes to breathe. I would start coughing and I couldn’t stop and I couldn’t seem to catch my breath. It was uncomfortable, but I didn’t think it was life threatening. Life limiting maybe, but not life threatening.

And then, almost ten years ago, it wasn’t so simple anymore. I got sick. Very, very sick. My poor doctor was taxed almost beyond his abilities trying to figure out what was wrong with me. He ran tests; he thought he had an answer. Off to a specialist I would go and they would determine that what he thought wasn’t it. He thought I had polyps in my nose. There’s family history and it seemed logical. Except, upon much closer examination by an ENT, it was determined that I absolutely didn’t. More blood tests and he found RSV. Yeah, that RSV. The one that kills babies and old people. That one.

I was so sick that I ended up taking two weeks leave from teaching — in the middle of a semester. Let me tell you how often that’s done. Yeah, very rarely. But, with his note and sick leave built up, I was able to do it without a loss of income. And still, I was sick afterward. It took another three months of me not getting better and him struggling to figure out the problem before the magic day happened.

I started coughing in the office. The spontaneous, racking cough that would get where I honestly thought I would die before I would stop coughing. The cough where I couldn’t catch my breath, couldn’t speak, couldn’t do anything but cough with tears streaming down my face.

He had been on his way to see another patient when he heard me. He burst into the room, and this was real bursting because I hadn’t even seen the nurse yet, and said, I know what it is.

I’m looking at him like he’s lost his mind and he hands me a rescue inhaler and tells me to breathe squeeze and breathe in. I did. He told me to do it again. I did.

And suddenly, I could breathe. It was like a miracle. It was Albuterol.

He called it non-wheezing asthma and he knew how to treat it. I take two different drugs, carry rescue inhalers on my person at all times, and have a nebulizer in my bedroom (and in my carry on luggage when I go on trips). You’d think it would be a relief to know what it is and how we can manage it, and in many, many ways it is. Now I can explain why some things set me off and make me cough and uncomfortable, and yeah. But, because it doesn’t sound like the asthma my family has known, it’s been hard, at times, for them to accept that it is, in fact, asthma.

At one time, I was advised that I should get full-fledged asthma testing because “it’s not really asthma unless you have those tests.” My doctors have a different point of view. I would not respond so well to the drugs that I take if I didn’t have asthma — in other words, they would have no appreciable affect on my coughing and on my struggles to breathe.

These days non-wheezing asthma has a new name: cough variant asthma. What’s particularly interesting, if you read around on it, is that it is difficult to diagnose because the usual tests for asthma don’t work. In fact, there are really only two ways to diagnose it 1) be lucky enough to have an attack in the doctor’s office, or 2) inhale irritants to trigger an attack in the office. In other words, have an attack to prove that’s what’s going on. So, I guess I got lucky in that I had an attack in the office and my doctor knew what he was hearing.

The really tough part is that because I have it, both of my kids have an increased chance of developing it. The first pediatrician we had didn’t think it was an issue, but our current one asks me every time we bring Ben in if I’ve seen any signs or anything that worries me. Because it’s difficult to diagnose and it does occur in children, the best way to catch it is for parents to be aware that it exists and that it doesn’t behave like typical asthma. So, what do I watch for:

1) Coughing. A dry cough that is completely unproductive. It can sound a bit like barking and a bit ragged. It can also seem uncontrollable, like the kid literally can’t stop coughing. Sometimes the kid may say that their ribs hurt from coughing or talk about a little tickle in the back of his/her throat that seems to be making them cough.

2) Specific things that seem to trigger a cough. My triggers are grass, pollen, cigarette smoke, dust, and perfume. So yeah, I don’t get out much.

Of course, this means when Ben has an unexplained coughing fit, I get a little nervous, but I don’t see the uncontrollable aspect that I associate with my asthma. He seems to be able to get it under control and he doesn’t seem to get breathless. I guess that means so far, so good.

Excuse me, I have to go find an inhaler — the dogs just came in and I’m having a “bad breathing” day.

Waiting

Waiting sucks.

We are waiting, patiently, for the doctors to coordinate and let us know when they plan to operate on Katie. We have a tentative date and I’ve used that tentative date to book kennel space for the dogs, but we can’t make arrangements for Ben until we have an actual date. We can’t inform all of the parties who want to know what’s going on because we don’t know ourselves.

I only received the tentative date because I begged for it. I had to explain that Sam (the older dog) has serious medical issues, which she does. Serious enough that she cannot be kenneled by any reputable kennel in this area. There are too many pills and too many issues that have to be dealt with for her to be comfortable and safe in a normal environment. She has, in the past, gone to stay with my parents, but at this juncture, her needs are a little too complex for them to handle and their environment (having to be walked where other dogs are walked) is not ideal for her. Fortunately, her vet is willing to board her and, from what we’ve been told, goes to some rather serious extremes to protect her when she’s with them. They’ve agreed to take her partner in crime as well, even though that takes away one emergency space should they need it. I am so grateful the girls can stay together. Sam will be calmer and less likely to stop eating if Peyton is with her. Since Peyton won’t stop eating for anything, it’s very likely that Sam will eat, too. Plus, I know that if anything starts to go wrong, Sam is in the best place for her, so I don’t have to worry about her while we’re handling Katie’s situation.

Katie continues to grow and, to me at least, it’s becoming more obvious that her forehead isn’t keeping up with the rest of her. She’s adorable, but her face does look out of proportion and that makes me sad. I know that P has continued to believe this is all wrong and she’s suddenly going to surprise everyone and just be fine, but I think even he is letting go of that dream now. Even he can see that something just isn’t quite right with our adorable little girl.

And she is adorable. While she’s waiting for this big event, which still seems so unreal to me, she is getting teeth (top front right came in on Monday), learning to stand, crawling, and starting on puffy snacks. She’s doing this all with amazing grace and speed.

We’re living our whole lives in a before the surgery vs. after the surgery mode. It’s draining and emotionally battering. We can’t seem to plan past September. I’m afraid to go beyond that because I don’t know what the future is going to hold. I want to believe that she’s going to be okay. I want to believe that this is going to go fine and she’s going to come out the other side with no lasting issues.

And then I remember she’s my daughter and I remember her birth, and I remember that just because these are done all the time and these are things that have so few people experience complications, that doesn’t mean that she won’t experience them. I’m thinking positively. I’m praying. I’m keeping the faith, but I’m here to tell you that it gets harder every day and will continue to get harder until we get that date so at least we know when our lives are going to be put on hold.

I hope it’s soon.