Context

Kevin twittered my pharmacy post as

"Interesting how you don't really notice extreme competence until it is replaced with incompetence": http://tinyurl.com/blcp49

I wish I could say things as concisely as he can. I was trying to think of how to explain that most of our medical dealings are characterized by "extreme competence". You tend to just accept it, though, like the air you breathe, gratefully but not consciously, until it's NOT there.

So THANK YOU THANK YOU to all the health care professionals and therapists who are quietly doing their job competently and thoroughly, and they are legion. I am always surprised at how many people are thoroughly competent, which makes it so surprising when we encounter the reverse. Even most of the individuals I dealt with at the pharmacy in the past couple of weeks fell into this category as individuals. They were cleaning up other peoples' messes.... which indicates the need for not only individual conscientiousness, but also a supervisory emphasis on efficiency.

Therapy Thoughts

Aidan has come off the waiting list for occupational therapy at the Therapy Unit down in town where he receives PT and regular evaluations. Unfortunately there is a hiatus at present in his physical therapy status due to the budget cuts in California, but yesterday he saw the PT for monitoring and was fitted for Thera-togs. After that he saw the OT, Miss K. There is a bit of ambiguity because if he is regularly seen at the unit he won't be able to see our homebound OT because of "duplication of services." But both agencies seem alright with him being quarterly monitored by the Therapy Unit and seeing the traveling OT weekly in our home.

It was interesting seeing Aidan work with a new therapist. Miss K, the OT, managed a working rapport with Aidan almost right away. She was low-key friendly with a slightly boyish manner -- you know, understated and matter of fact. This worked really well with Aidan's comfort level. He tends to back off from people who see his quietness (a family culture thing) and try to bolster him out of it with effusive cheer. But she got right down to work with him and saved her good energy for interacting with him over the task, "side by side" rather than "face to face" -- which is a better way to handle introverts while you are still developing a relationship with them. Even with extroverts I think it is often better to start off with this kind of lowkey approach at least in therapy because some extroverts start escalating into excitement when they are treated with too much joviality in this kind of situation.

The other thing I liked about her was her watchfulness and "masterly inactivity". When he was doing a task she watched carefully and intelligently. She didn't try to "help" him when he wasn't wanting to be helped. It's odd that I've found that a HUGE temptation for therapists is to jump in and "help" with a task rather than let him finish on his own. This is often because the therapist wants to go on to the next thing on the agenda. But of course, if your goal is that a child learn to do things for himself, you don't want to constantly remove the possibility from him. That's why I'm surprised when I see professionals doing this. I learned it the hard way through homeschooling for several years. I realized I was debilitating the initiative. With Aidan it invariably means a lack of focus results -- he gives up, starts phasing out and becoming distractable. Then of course the therapist's tendency is to remonstrate with him for his spaciness. I've seen several therapy sessions fatally wounded by this.

Now, it's a different thing to help the child have success.... that is, you see defeat and frustration about to take over so you scaffold the child's efforts by a minimal facilitating of your own. Miss K didn't have to do this with him because he was completely focused and calm. She had a bunch of vests with different fastenings -- snaps,zipper, buttons. He was all right with the snaps and zippers but struggled with the buttons. He ended up getting two done though, and was obviously very much into it. I admired her for holding back and letting him finish the second one and furthermore, encircling the task with a kind of calm concentration rather than a "hurry up and be done" type of feeling.

The therapists Aidan has worked with at the unit tend to stand back as much as possible with a task, then help with verbal instruction, and only then do physical guidance. When Aidan was younger this could sometimes backfire. He would quickly lose interest in a challenging task, and words don't enter his consciousness very well -- he has a lot of difficulty translated verbal directions into actions. So by the time physical prompting comes in it is a "rescue" and he is already mentally done with the whole thing. Back then I used to start with gently physically guiding him through things WHILE giving him a verbal formula that summarized the motor movement. Then slowly I'd fade the guidance to a simple touch plus word and finally just the word. But now he seems better motivated to attack the skill and try to master it and only if he has severe difficulty to look around for help.

While Aidan was trying on the Thera-Togs, there was another therapist and a father and teen daughter in the room, along with a translator for the father, who was Oriental. This therapist was talking in a really directive, bracing way. "Walk straight! Come on, you can do it. Straighter!" and I heard her talking about the girl's "lazy, sloppy" gait and things of this kind. I was only incidentally overhearing and had no way of judging fairly what was going on. But I know this approach wouldn't work for Aidan or for me.

I like to see different therapists and the way they use their natural personalities plus their professional skills to build a working relationship with children and their parents. Often I pick up some useful attitudes and strategies. Often, too, I see things to avoid or that I definitely won't follow up on at home because I think they don't have a good effect. In this case, Miss K's style was compatible enough with mine that I can really see trying some of her therapies with Aidan at home. She worked on his writing and showed how to use different colored shoelaces to make the process of shoe-tying visually distinctive. She breaks things down into small pieces and goes carefully forward, not unlike Montessori methods. She used a minimum of words while he was working. She told me she scours the internet and trade journals and consults with other therapists to figure out a range of strategies for any given difficulty. This is basically how I approach things, or try to approach things (at least, at best, when I don't let myself get unfocused and drift). I like to have a range of things to try with a central goal in mind, and a flexible approach that adjusts to the individual, and a sort of matter of fact attention to problems and their solutions. Needless to say I don't always achieve this -- my problem besides lack of focus is a kind of hesitation and second-guessing. But when I'm in my best mode that is usually the territory I'm in.

the pharmacy that wouldn't follow through

Here is the kind of situation that comes up occasionally in the life of any parent of a medically fragile child. On the up side, this kind of thing hasn't happened very often. On the down side, these situations can quickly consume a lot of time and energy and leave you realizing the vulnerability of being dependent on someone else's competence for the well being of your own child. There are some strategies that are useful in preventing or minimizing the problems. I will share the coping strategies I have learned, and if you have your own to add I would love to hear them.

About two weeks ago, on the weekend, I tried to order Aidan's anti-rejection medicine using the automated refill line to his pharmacy, and found that the hospital pharmacy we had gotten our meds from for several years had changed hands and become part of a national chain of drug stores. It doesn't matter which one it was because I doubt if this is a systemic problem, just a localized one. Anyway, Aidan's old Rx number wouldn't work under their new system.

So the next Monday I called to place the order by voice, and the person who I spoke to said it would be ready later that day. I didn't take her too seriously about "that day" because the medication has to be prepared under a chemotherapy hood and usually the pharmacists tell you to give them a 48 hour window. But we weren't coming to town until Wednesday, anyway (the pharmacy is in town 60 miles away), which would easily give them time.

I neglected to call that day to make sure that they had it ready. I usually do call, but life was busy and we had to be in town anyway so we just went. After Aidan's clinic at the hospital I went to the pharmacy and found that they had absolutely no record that I had called. So they didn't have the medicine prepared. The staff member I spoke to apologized profusely and asked if we could stay in town for 2 more hours while they got it ready, assuring us it would have top priority. One of the pharmacists passing by while we were talking mentioned under his breath that this sort of thing had been happening too often, which made me feel better because up till then I wondered it they were thinking me a flake who wanted to shove off my forgetfulness on them.

Two hours later I went back -- I spoke to a different person behind the counter and found that she knew nothing of the whole episode two hours before. The medicine was not ready, not even started. She told me with raised eyebrows that it would take at least two more hours to prepare the medicine because it had to be put under the chemo hood, etc.

My eyebrows raised in turn. By this time it was evening and we had a snowstorm going on up in our area. So I told her very seriously indeed that we couldn't really afford to wait any longer and asked what the pharmacy could do about it, given that they had failed to deliver twice now. She said they could give us a week's dose right then (they usually keep some prepared on hand for emergencies and hospital intakes, etc) and they would have the rest made by the next day. I said we weren't going to need the balance until next week, since they had provided the week's supply, and that we weren't going to be in town until the next week anyway. We waited about 30 more minutes and finally got the small bottle to bring home. I thanked them very sincerely since I felt they had had a hassle to deal with this, too, and I felt I should have called ahead seeing that they were obviously in transition, taking over the former pharmacy's clientele.

The next day the pharmacy called to tell me that the medicine wouldn't be prepared that day as they had told me. I explained again that we weren't coming into town until the next week anyway so we were fine.

So fast forward a week, to yesterday. Kevin was going to drive into town to see Sean's track event. Learning from past experience, I made sure to call the pharmacy that morning. The staff member that answered the phone said, "There is no medicine prepared here for him!" Astonished, I said that it had been promised to be ready four days ago and that we needed the medicine that day since it was to keep Aidan from rejecting his liver. She went off to consult in the back and came back: "Oh, it's here. It was in the refrigerator."

After I hung up I thought: "In the refrigerator???" The medicine is NOT usually supposed to be in the refrigerator. It generally has a label that says on it in no uncertain terms "DO NOT REFRIGERATE." I talked to Kevin and told him to check when he went to the pharmacy if the medicine was cold.

That afternoon, he called from town and said, "The medicine was cold; the worker got it from the refrigerator; and it has a label right on it saying "DO NOT refrigerate."

So I quickly put in a call to the transplant nurse at the GI clinic, who is a great resource for me in getting things done. I wanted to ask if the medicine was OK if it had been refrigerated. I left a voicemail message, at the same time asking if she could send in the prescription to a different pharmacy. We have a pharmacy closer to our house (20 miles instead of 60) but just hadn't had the motivation to make the change until then since the hospital pharmacy had always been so good to us.

Then I looked online but couldn't find anything about temperature range. Kevin came home with the medication that night.

The next morning I got the call back from the transplant nurse, and we chatted a bit. She was very sympathetic and said she couldn't find anything that said whether the med would be still OK or not. While talking to her I realized I could have just called the pharmacy and asked to speak with a pharmacist who would know more about the specifics of the compound than she did. She agreed that this was probably the thing to do. So after talking to her, I called the pharmacy and left a message that explained the problem and asked them to call back and let me know whether the medicine was OK or not.

Shortly afterward, someone called back. Here is where I should have been careful to write down a name, but naively didn't. This lady said that according to the pharmacist the medicine would have to be replaced and she promised that it would be ready that afternoon. I mentioned "It has to be made under a chemo hood. Are you SURE it will be ready today?" She said they were going to make it right away. She sounded confident and competent.

So, you guessed it. We got through with Aidan's appointment in town and drove to the other side of town to the pharmacy, and they had absolutely no record of any of this. The medicine wasn't ready. They didn't know who had talked to me. The manager came and said she would have some medicine started right away but it would take a while. She said "I wish you could remember who you talked to" and it sounded to me like "IF you really DID talk to anyone." It was frustrating, and made me realize that I had slipped up again in not taking down a name.

But at that point, you can guess I felt like I was in our own particular version of Groundhog Day. "We've DONE this already! This has been going on for almost two weeks! " I told her we couldn't wait (it was again, evening by now and we had a long drive ahead of us). I told her we would need to draw from their extra supply again. We needed medicine that very day and we needed to not have to worry about it anymore. It was agreed quickly. Gosh, I'm not usually the type to make a scene but I was in the late-beginning stages of one by then. The manager said they would give us some to take home and then send us the rest by UPS. She had the bottle quickly ready, and I doublechecked whether they still had our address. I asked Kevin if he thought I looked sane, because having the same thing happen so many times made me start feeling like one of those women in movies that are suspected of having some mental disorder and start wondering if they really do.

So at this point we have the two week's supply of medicine, which is nice, with promise of more. Sigh, I am questioning whether it will come ... and now am brooding over whether or not this bottle I have now came from the fridge, too. I joked to Kevin "maybe they just poured a bit from the bottle I brought back into the smaller bottle to make it look like they were giving me a fresh supply". That's not a good joke. It makes you realize how much you depend on the competence of your pharmacist, especially when your child's health is at stake, and so I'm glad that I asked the nurse to switch over our prescription to the other pharmacy.

So what I've learned or rather, reinforced, in my mind, in dealing with medical care providers, insurance companies and the like -- any place where it really matters to your wellbeing that they get it right:

• Take down names! Most of the time, especially during insurance hassles, I write down a log of the phone conversation, time and date, and ask them to please repeat their name so I can make sure I got it right at the beginning of the conversation. The reason I wasn't careful this time was because I had some residual trust of our very excellent hospital pharmacy before it changed hands.
  
• Doublecheck to make sure the other party has followed through with what he or she was supposed to, especially if it's you who is going to be inconvenienced by their errors.
• Be resolute, but polite, assertive but not aggressive. Pay no attention to "you're a pain, please go away" signals, because they're irrelevant. You want a solution, not new friends. But don't make enemies gratuitously, either. Be polite and positive.
• A little bit of transparency in emotion doesn't seem to hurt, though. When I'm surprised and dismayed and show it, it puts pressure on them to take me seriously and solve the problem, which American service personnel are instinctively geared towards doing. I'm sure in some countries you would just get laughed at, but most of the time not here. If you do get treated with contempt, that is a dysfunctional business place and you ought to break of all ties as thoroughly and quickly as you can. (I think it's different when you're dealing with a doctor -- I try to stay very cool and substantial in those situations, because "emotional parent syndrome" can disempower you with a doctor who's not on your side).
  
• Present the problem and ask them if they can come up with a solution. This is neutral and puts the thinking process where it belongs, because you usually can't tell them how their business is run and it isn't your job, anyway. If the person you are talking to shrugs that off, ask if you can talk to someone who can solve the problem. Persist until you get something you can live with.
• Provide closure. Try to leave the place on a positive note. Then resolve the case in your mind. Venting a bit to someone or writing a blog : ) can help with the emotional side, which is important. Evaluating the situation objectively to figure out what you could have done in light of what you now know can help you be prepared in future situations. Decide whether the situation needs a letter of complaint, a change to a different business, or some other follow-up action.
  

"Let me face the truth"

Clare writes about her little brother Aidan in Facing the Truth.

Has Aidan made our lives extraordinary, exceptional, in spite of every hardship? Was it worth the dark days, the hair-pulling, the tempers, the door wars? For Aidan and everything he has given, am I forever indebted to God in a way that I can never repay?

Also see Clare's perspective on Aidan's story.

Checklist for Difficult Times

When Aidan was getting ready to go "HOME home" after his liver transplant (that is, home to our house in the mountains rather than "home" to our temporary San Francisco apartment close to the hospital) the transplant coordinator told me that many parents had let her know that returning to normal life was the hardest part of what the transplant doctor called "the marathon". When your child is very ill, you keep going moment by moment. It carries a kind of adrenalin charge of its own, and you get lots of support. When you get home, you start your old life on new terms. Your life has changed. The folks at home can't really imagine how much, and they don't really, really want to hear about it all that much. They really don't, though they try to be polite. Anyway, it would be too hard to tell them, so that's why you often end up being able to chat more freely with the other moms and dads in the clinic waiting rooms than you can with the folks at your church. The people at the waiting room already know what you mean; they have their own version.

At first, I was just happy to be home with my child. After a while, though, I saw what she meant. Some days were just plain hard. With six children 13 and down you have hard days sometimes anyway; and when the littlest has multiple medical issues and you are still recovering from a Major Life Event, the difficulty seems doubled. I remember sometimes standing in the middle of a room wondering what I was supposed to be doing next. I felt like I was hearing a creepy soundtrack as I stood there; the kind that tells you that the heroine is distrusting her own sanity, or that something Bad is about to happen. Or as if the heroine felt a sudden gust of air and looked down and the ground was opening up under her feet. You know the kind of scene. And so it was, very often. Aidan would have to be rushed to the ER with acute illness, and I would end up back at the hospital with him for several days to a month, uncertain what each hour would bring. In between, life seemed normal, but we never would know for how long. So yes, and my sanity was sometimes a bit fragile, too.

Anyway, that's all to say that remembering those days, I wrote out an Overwhelmed Checklist in response to a question on a message board. I wanted to put it here because you never know; I may need it again. It helped me very much when I got pregnant with Paddy and entered the world of intensive, scary medical intervention again. It gave me a "next thing" to do and a way to do it. A modified version still helps me when I need to "reset".... which I do regularly when things are just not going well.

Suggestions for the Overwhelmed:

First, a schedule with pegs in it is a great support. You can easily center it around eating times. Plan for meals that everyone needs to eat -- if you think the little ones or teenagers need food outside the basic three meals, then prepare a little grazing tray for the little ones, put the teens in charge of their own and possibly their little siblings' in-between snacks.

The mealtime pegs can help with to remind you of other things. I used to "peg" my medically fragile child's medications, G Tube feedings, oxygen checks etc around five times: Getting Up, Breakfast, Lunch, Dinner, and Bedtime. He doesn't have as many interventions anymore but these Five Things still help give a pattern to my day.

Laundry goes the same way -- load in at rising, change loads at breakfast, change again at lunch etc. It helped me to cut back on the amount of clothes we had. The children knew they didn't have enough clothes to keep tossing them into the laundry basket. And it was easier for me to keep up regularly if there weren't always mounds and mounds of things in the laundry room.

The worry and feeling of being overwhelmed -- It helped me to have a strategy for the essentials so I always had a "next thing" to do, and then just be OK about the things that slipped through occasionally. IF the medically needy child was being treated, the kids had food in their mouths, we were basically functioning as a family and I was keeping all the needs in prayer I felt like it was sufficient.

Then a bit of 3Rs and fun time is a bonus. But basically I ignored everything that was either out of my control or not a survival/safety need. At least until I was out of my "overwhelmed" time and could actually think about the extras again. I had to be very careful to reserve my strength and focus and not get distracted by things that didn't build us up. Any extra energy went to nurturing and those little precious moments that occur in every family but are sometimes easily ignored when under stress.

It helped me to separate the FEELING of being actually overwhelmed from the reality. I am sort of depressive so it is easy for me to become discouraged by chaos and fearful about possible catastrophes --"how much more can I endure??" I had to deal with this separately from the actual situation.... as something that was like a spiritual or physical trial. So having a sort of strategy helped me with this... and I often thought about Jesus on the Via Dolorosa and how He stumbled and fell 3 times, so it was consoling to realize that you can be doing well and STILL fall under the weight sometimes. God doesn't require us to be superhuman.

Another thing that sometimes has the potential to drag me down -- a feeling of regret over past mistakes. When in a very difficult situation, it's important to let these go. Sure, learn from the mistakes but move on. I don't know if this is a problem for you since you didn't mention it but in my experience most older moms and dads with some grown children have SOME regrets. It's important to just deal with it, hand it to God and not let it leach out the strength you need to deal with what's going on currently. God can work with our mistakes and our sins if we let Him.

Prayer Request

Annika got her liver transplant. Things are still rough for her, though. She and her team could use prayers.

Also, a California Catholic homeschooling family's little girl is in critical condition.

Little Therese and Aidan

This is the anniversary of Aidan's transplant. If you remember, 8 years ago in 1999 was the year St Therese's relics were touring the US. Elizabeth Foss and the members of CCM had prayed for a shower of roses for us during our vigil, and St Therese responded with a generosity we will never forget. The touring of the relics was just one example. We used to joke -- joking was a stress-buster for us, a way of dealing with the sheer tragic oddity of our situation -- that next a concrete rose would fall off a San Francisco skyscraper and land on our heads.


There was one time, when Aidan was doing very badly after his transplant, that we got a holy card from somewhere with a picture of The Little Flower's older, suffering face -- when the disease had taken hold and she was clearly battling severe pain. The card quoted her, "To love... is to give everything... and to give oneself."

At the time Aidan had had a major stroke and was completely paralyzed on one side. We had fought so hard to help him stay alive and now it looked like he might be alive but no more. All that was left at that point was love... just love. It wasn't a feeling. It was something like the "dark night of the soul" -- a nothingness that was more powerful and strong than anything I had ever felt before.

Just around that time, standing by Aidan's cribside, I felt a presence that was very like someone standing right behind me at my shoulder. I think God must have given me a grace of really sensing His "cloud of witnesses" and particularly that of her, who promised to "spend her heaven doing good on earth" and to "send a shower of roses from heaven."

One of the most memorable parts of the movie Therese was when she was struggling in her last days and hours before death. The movie transcended itself there. It made me cry especially because it brought to mind Aidan's agony in the days before and after his transplant.

Aidan is Back Home

So there is a happy end to this varicella epic. ... perhaps odyssey, considering all the travelling we have done and the culminating happy reunion of our family. We are SO happy. Tired, but happy.

The villainous micro-intruders are slain and Aidan is recovering, with a few battle scars in the form of IV bruises (he had seven total failures) and small pox (that looks strange, but you know what I mean) which are quickly crusting over. He only got about 30 lesions total, so I think the immunoglobulin shots probably did help, and the acyclovir did the rest.

He has to drink some bitter blue potion -- oral acyclovir in a compound, a substantial tablespoonful at a dose -- for another week. He has been soldierly about it.

Paddy got a heavier dose of the disease than the rest of the children, but is healing up though justifiably a bit cranky. Kieron is almost back to normal and is looking forward to (finally) seeing his friends at homeschool meeting this Friday. Sean is sore, but from Day 2 of football practice, not from disease.

Together again!

Sunday Psalm

These days, it seems I have to choose which of my blogs to update. For the progression of the chickenpox in our house, see here. The short version is that Aidan is presently at the hospital but today, doing pretty well. We don't know when he will be coming home, but are hopeful that the prayers and the medications are having their effect.

Yesterday, though, when I left him at the regional hospital with his Dad, an hour's drive away from home, he was running a temperature and not even interested in drinking Sprite, which is his all-time favorite indulgence.

Though I knew he was in the loving care of his father, it was so hard to leave him and so hard to drive the hour home in our little rental car (our Suburban has broken down in the midst of this varicella plague, poor trusty machine, having travelled over 180 thousand miles on our medical odysseys in the last 8 years). I was crying in the car and feeling angry at myself for crying. Somehow when I was growing up I acquired the idea that it was better to stuff emotions under the surface -- "I am a rock; I am an island/ And rocks feel no pain; and islands never cry" --- and weak and self-indulgent to express them. The result is that whenever a crisis hits, I go into affect-less mode. This is fine, my best friend, who has a master's degree in family therapy, tells me, IF you take pains to work through those emotion later when you have more time and space. Sometimes I forget to do that, though, or lose touch completely with how I feel, so I end up like one of TS Eliot's characters, wandering through life with a vague displaced melancholy.

I stopped at Mass on the way home (my older boys had walked to Mass at our local chapel, but that was already over, and my daughter had stayed home with the varicella-afflicted younger two).

At Mass, we sang a song based on Psalms 91. I don't particularly care for the melody or arrangement of this hymn in the Oregon Catholic Press hymnal.... if you are Catholic and don't go to a traditional mass, you probably know the one. But the lyrics themselves, taken almost verbatim from scripture, sounded like they were spoken just to me -- here is the psalm itself in part:

1 He who dwells in the shelter of the Most High
will rest in the shadow of the Almighty.

2 I will say of the LORD, "He is my refuge and my fortress,
my God, in whom I trust."

3 Surely he will save you from the fowler's snare
and from the deadly pestilence.

4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.

5 You will not fear the terror of night,
nor the arrow that flies by day,

6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.

7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.

The illness of my child is one of the most difficult things I've ever had to endure. To start the IV yesterday, the nurses had to try five times. They were visibly shaken. This is only five more of an almost uncountable series of needles in his short eight years of life. It was so hard to listen to him say "I am going to be brave! See? I'm being brave!" with his big brown eyes filled with tears. It was harder for him, of course, and that is the worst part. I can't take that away from him. I would like to, but I can't.

Whenever I hold him and comfort Aidan through these things, I feel glad that three thousand years ago, that king and musician and poet, David, loved God enough even through his own flaws and sins, and had the gifts and heart, to write those Psalms.

Who would write about God covering him with feathers and sheltering him under wings, protecting him in a fortress, who had not felt the scalding vulnerability of having things happen which were not under human control?

Surely David had a true intuition that God's heart speaks a little like his did. That He mourns with us when we are mourning. That feathers and wings and fortresses and shields were in some way true types of what God's protection is about. That Our Lord would want to take our burdens upon our shoulders; that in truth, He would and did. That somehow, everything, though mysterious and painful, is all right; that those pestilences and plagues are not all-mighty.

I am glad that King David (and his Lord and His Mother, a thousand years later) showed me that tears and sorrowing are not weakness, but part of being stamped with God's image, and the reverse side of joy:

"Blessed are those who mourn, For they shall be comforted."

In Which I Rely on My Daughter

I haven't been around much recently on this blog and this explains why.

So for this entry I'm relying my daughter's artistry and hard work.

Here are some pictures my daughter took of our temporary isolation up in the mountains.(that's one of them, of Aidan, there on the side)


Also, if you check out my daughter's recent blog entries, there are some more pictures of our trip to Ireland:

Return from Ireland
More sights of Dublin
Our Cottage in Killarney
The Cottage Again

and a post about Harry Potter and the Half-Blood Prince.

She also kept the kitchen running and Paddy happy while I was up at the cabin with Aidan over the weekend. She even made muffins. And we got to have some nice mother and daughter time on the last day, when she was up there with me and Aidan.

Having a bit of time to spend almost-alone with Liam, and then Clare, was a silver lining to this unexpected medical storm. We are in the eye of the storm right now -- the calm in the middle -- while waiting to see if and when Aidan and his other two siblings come down with the virus.

I don't know if you have ever heard Love is a Voyage by John McDermott, sung by Christy Moore and also the Irish Tenors. It is a sweet Irish song comparing married life to a voyage. Part of it goes:

Life is an ocean and love is a boat
In troubled water that keeps us afloat
When we started the voyage, there was just me and you
Now gathered round us, we have our own crew

We have thought of that song more than once during some of the crises of the past few years, and this time, once again, I was proud of our crew as we sailed through some slightly rough waters.

Life on the Transplant Roller Coaster

Moreena at The Wait and the Wonder writes about the helplessness of passengers in the medical roller coaster here and here. I came to her post by way of Melissa at the Lilting House, who wrote a post here sharing her experience about waiting for a diagnosis for her Wonderboy.

So of course, after reading those, I got pulled into the Pediatric Grand Rounds. I ended up pulling another half-all-nighter, which is why I visit Moreena's blog only when I know I can afford to sleep in a bit next morning.

Moreena writes honestly and beautifully about the ups and downs of living with medical suspense, never knowing whether the next day will bring a glorious swoop towards the sky or a heartstopping plunge towards the core of the earth.

She writes about the chronic worry that is part of the deal of loving a chronically ill child as opposed to a healthy one, even if it's true that life is uncertain and health can turn to illness in a second:

Look at it this way: One guy is walking down the sidewalk, going home from work as he does every day. Unbeknownst to him, a piano being wenched into a 3rd floor apartment is about to break loose and fall on his head. Or maybe a stray bullet is about to strike him in the chest. Or maybe a driver coming along just behind him is about to have a heart attack, jump the curb, and run his car over this poor unsuspecting pedestrian. One of those horrible things is definitely going to be happening in the next 2 minutes.

Another guy is walking down the street on a military patrol, as he does every night, in a country currently experiencing a violent civil war.

The first guy's chance of dying in the next 2 minutes is 100%. The second guy's chance of dying in the next 2 minutes is, let's say, 5%. But which one is most likely to be experiencing extreme anxiety, fear, worry, nervousness, stress? Of course, the 5% guy.

Anyway, I usually don't post about Aidan and his past here on this blog. Usually when I do, to tell the truth, it's because of something Moreena's written ;-), for example, here and here. I don't think this blog, which is basically about homeschooling a crew, is exactly suited to the medical epic genre. So all this is to say I'm starting a new one -- here. I'll still have Aidan's special education stuff on here but the other blog will give me more freedom to talk specifically about Aidan. I'd like to have a way to get those memories out on a screen, both so I can have them retrievable someday and so that I can deal with some of the things that keep me awake at night when I think of them. Also, since neonatal hemochromatosis is such a way-out-there disease, though not quite as rare as this one, I think maybe it's time to have my own little waypost of experience on the web somewhere.

Sickness

I am bringing this over from Aidan's old caringbridge site. As you might guess, Aidan's relatives read Caringbridge so I wrote this in a cheerful way so as to reassure them.
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January 3rd
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A few days after Christmas our whole family came down with some sort of respiratory virus. We thought it was Influenza but apparently it wasn't (more on that later). Anyway, one of us after another succumbed to a moderately high temp, general lassitude and aching, and then on to sniffles and coughing.

Aidan seemed to have one of the milder doses in the family range but on New Years' Eve (of course) he started getting quieter and more withdrawn. I brought out his pulse oximeter for the first time in about 2 years, to measure his Oxygen Sats, and he was too low -- in the mid to upper-80's. That is enough to account for low energy and irritability, which is what he was displaying. He was also running a temperature for the first time during this virus.

We put him on the oxygen we had from his earlier illnesses. A liter kept him in the upper-90 range for the night, but in the morning he still seemed too quiet and was breathing with some effort. We ended up calling the doctor who advised us to take him into the emergency room for a chest X-ray.

To make a long story short, the X ray showed something in his left lung and so they decided to consider it a mild pneumonia and admit him to the hospital. They did a blood culture and started him on antibiotics.

The ER nurse and phlebotomist were able to get an IV started with one poke AND draw blood, which in Aidan's history is simply wonderful good fortune. He coped beautifully, requesting a sticker, and saying, "I am being brave!" which made the nurse almost cry. Actually, he cashed out in stickers, since the X ray technician gave him a few too.

He was discharged about noon today. The culture was negative so apparently his pneumonia is viral rather than bacterial, but they are keeping him on oral antibiotics for a few days just to make sure, I guess. I, Aidan's mom, stayed with him for the 48 hours while Kevin, his dad, took 3 year old Paddy home to the other sick kids. There was a significant ice storm and several power outages to make their life adventurous while we were gone. I'm not sure who had it worse, but it is good to be reunited with a clear sky over our heads again. That was a long 48 hours for everyone, especially since I was sick and considered in isolation too, so I couldn't get to the cafeteria. They brought me meals and some coffee, but not enough of the latter!

Last Monday Aidan's MIckey G Tube came out and we had to run to the GI clinic to get a new one on Tuesday. So this past week has been quite medically eventful all things considered. I hope that is our share of hospitalizations for 2006. Time will tell!

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January 8th
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It's been a long time since Aidan has had two medical updates in a week's time! (see journal history for earlier entries).

Friday afternoon Aidan had a mild seizure. I think it was what they call a "partial seizure". He did not lose consciousness or become complete unresponsive. Rather, he started staggering around the living room, talking incoherently, and then leaned against the couch, gagging and retching. I helped him get on and he told me "I'm going to sleep" but the focus of his eyes started to drift upwards and to the left, which is what has happened in former seizures.

I brought him upstairs, trying to talk to him and keep him in the picture. He was shaking but not jerking the way he has in former seizures. Upstairs, he started talking and acting more clearly, and then fell asleep immediately and deeply, still with a dirty diaper (he had become incontinent during the seizure).

I called the pharmacist and he said that one of Aidan's antibiotics can sometimes cause seizures. So I called the doctor, the "hospitalist" at the hospital where Aidan had stayed. He thought under the circumstances, since the antibiotics were mostly a precaution anyway, that we should discontinue them.

Since then Aidan has been acting great. He ran a low temperature that night, but not since then. He still has a cold -- but we all do. His breathing has been great. In fact, Brendan's "sats" are lower than Aidan's -- Brendan's are hanging out in the low to mid 90's, and Aidan's are in the mid- to upper -90's -- great considering that we are at over a mile-high altitude.

Today Aidan is coming down with us to take his oldest brother Liam to the train station to return to college. We are not looking forward to that!

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January 10th
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Aidan's had quite a couple of weeks medically. Most recently he had a seizure while we were in town taking his oldest brother Liam to the Amtrak station to return to college. The seizure started out as a partial one, like the one last Friday (see Journal History), but then became a full-blown one. We drove him to the Children's Hospital, where his Daddy brought him into the ER at a run and called for immediate medical attention. He was taken straight back to a table and given Oxygen and an IV started for Ativan (a sedative to halt the seizure).

Finally the seizure stopped, but by that time Aidan had stopped breathing on his own... he was not "moving air" -- as they said -- his chest was not rising and falling. The respiratory technician was giving him oxygen and breathing for him through the bag, but they had to decide whether to put him on a respirator or not. While trying to decide, they tried to draw blood from the artery, and this kicked him back into gear, almost literally, since he struggled and kicked and then started breathing again on his own.

After this, he slept for quite a long time due to the seizure and the sedative. He stayed in the ER overnight for observation and because the ICU and general ward were both full. Then he was moved to a general care unit the next day, and was discharged today.

He seems fine -- still recovering from the flu, but otherwise his normal self.

We are to see his neurologist in the next month or two, but they have not put him on a seizure med -- they left us to decide that, and we thought it made more sense to wait and see. His seizures are certainly scary, but they have been infrequent, and under normal circumstances we would have his seizure meds with us and be able to give them to him. If he starts seizing more frequently, the picture might look a bit differently both to us and to the neurologist.

His occupational therapist says that also, it might be a good idea to have some cranio-sacral therapy done when he has been ill since the seizures tend to happen when he is sick, and the cranio-sacral work has had some beneficial results with some people with a seizure disorder.

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February 5
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It's Sunday and I, Aidan's mom, have some free time on my hands since everyone else is watching the Superbowl! So I thought I would write a "good" update, since I think Aidan's grandma is absolutely right that the good times are important to write about too.

Aidan has been doing very well since his pneumonia and seizure. He had a cold last week and ran a temperature, but was over it quickly.

He is learning his alphabet and knows almost all the letters. We are starting to work on words now. He can recognize his name, "Aidan", and also "Pikachu" (his favorite Pokemon)

His favorite thing to do besides going to Grandma's house is going outside to play in the snow. We still have quite a lot in our front yard, even though it's been in the 50's. He tried sledding last week -- loved it!

He just helped me make pizza, our Sunday tradition.

His occupational and speech therapists haven't been able to come as often this winter because of illness and weather, but though he misses their visits when they do not come, he seems to be progressing pretty well.