You say goodbye, and we say hello

I am sure that many of the families who have received excellent care as we did in Michigan wish to say thank you. In many ways, it is hard to express all that you would like to say. During our last night at Mott Children's, we made our attempt to show our deep gratitude as the boys got into their PJ's and took small gifts and cards decorated by Elliott and Euan to the medical teams who had looked after Elliott so lovingly and professionally. As we made our way into the ICU, I noticed the window pictured above (you can see Monica and the boys making their way behind me) with the word 'believe' painted onto the glass. In the ICU, there is often no more appropriate word to hold onto than that. 

Our hospital experience saw believing take on all sorts of tangible forms. One of the great gifts for us was to connect with fellow travelers on the road to wellness. Pictured above is the family of Jesse, a teenage boy who was Elliott's roommate on the floor after our discharge from ICU. Every night, as Elliott and Euan get ready to sleep, we say prayers for Jesse and those who love and care for him, reaching out to that same will to believe that we had shared together in our hospital room.

Along with new friends, friends and family whom we have known and held dear for years have also helped us hold onto believing. The above picture is of Michigan-based friends who drove a couple of hours with their own little bundle of joy, Mira, to be with us the day before we flew home to San Diego. 

In the end, perhaps the thing that kept us believing through all of the ups and downs of our hospital stays is the hope that we would indeed one day come back to home sweet home, and push open our very own front door. That is, thank the Lord, exactly the joy that we all got to experience on Monday night. The sense of relief and excitement for all three of our children was palpable. Euan sat at the kitchen table and happily ate breakfast cereal for dinner, Elliott explored all of his old toys, and Annie gave a happy sigh of relief as she turned her head to the side of her crib and recognized that she too was home. 

However, the icing on the cake of our homecoming was that slow dawn that it doesn't snow in Pacific Beach, San Diego, and with the wonderful new lighting that the parish kindly installed in the boys play area behind our garage, night basketball in the warmth of a January night is no longer a dream. 

Thank you to all of you who have left comments on this blog and for the many more who have been praying for Elliott from around the world. This will be our last post although I am planning to keep it all for posterity as a book (Google think of everything!). However, if I may, I will share the two ways that Monica and I intend to stay connected to the extraordinary work that Dr. James Stanley does to restore the lives of children from across the world. One, is that we will pray for him and his work. The other, is that we plan to give to a fund, set up by parents like us of a child who received care from Dr. Stanley, that supports families making the trip to Michigan to get their children the help they need. In case you would like to know more for yourself, here is the link to their page: http://www.med.umich.edu/mott/help/gift_family_stanley.html 

Elliott continues to make great progress in his recovery. He is running around, driving us crazy by asking the same question 15 times, and he ate at least three Weetabix for breakfast this morning. It's good to be back. 

Thank you, and grace and peace to you all.

With love,

The Mainwaring Family

One more night

It's official (almost) Elliott gets discharged tomorrow and then it is 'Adios Michigan'. All we need is a couple of dozen of people to sign-off and we are free! So, with this our last night ahead of us, it seems to me to be a good time to think about what it has meant to be in this hospital. Of course, for each of us the experience has been different. For Elliott, to know that he is now free from 'pokes' is a serious boon. For Euan and Annie, the opportunity to move beyond the confines of hotel rooms, play areas, and cold weather trips to the Ann Arbor 'Hands On Museum' (as wonderful as it is), will be welcome to say the least. The familiar toys and beds and colors of home are waiting for all three of them. For my mother-in-law, there is, at last, the opportunity to return to her husband in Los Angeles. Monica and I are so very grateful for Momute's sacrifice to come be with us these past two weeks, particularly given that her husband, our children's 'Grandaddyo', has not been too well himself, although he is clearly in better health now if the nifty ready-to-build propeller he sent Elliott today is anything to go by. Thank you too, Grandaddyo!

For Monica, the strain of having three children needing her, at times at every turn, has been draining. She deserves a good long spell of uneventful life back in San Diego. I think we all desire that. Yet, there is something about this hospital experience that I, as Elliott's dad, will miss. For, as much as my body pines to lie down in a normal bed for the night, and as profoundly grateful I am that Elliott has been restored to health and can now go on to pick up his four-year old duties, I have been fortunate enough to spend lots and lots of time with Elliott as he has battled through all of this.

Some of the best time with Elliott has been when he has been both well enough and content just to hang out with his dad. I know, these days won't last, soon he will think I am extremely uncool simply by walking into the room. Monica already thinks that I confuse things simply by existing, or she said something to that effect today. I took it as a compliment. For now, though, for Elliott, I will do, and I love it.

Sustaining good relations through the long hours of hospitalization requires some good friends. Those of you in the know will recognize two of our most prized compadres: Woody and Buzz Lightyear. We also have several thousand stickers, a plethora of new books and games, toys soft and hard, and lots and lots of cards and pictures to look at. We will never be able to thank you enough for all of your incredible generosity.

Good food also helps, and we have a host of angels from St. Andrew's Episcopal Church, Ann Arbor, to thank for their generous love for us in providing dinner for the whole family every night of our stay here. People say that the sign 'The Episcopal Church Welcomes You' is not true. They should come to Ann Arbor, the welcome has been profound.

 In the end, though, these two weeks in Michigan have been about one thing: 'the balloon in my kidney'. Today, Dr. Stanley, our surgeon, came to tell us that the results of the morning's arteriogram were great. It is truly something to see the images of the interior of Elliott's left kidney, one image with 'balloon' (anuerysm) and narrowed artery (stenosis), the other without. The repair work Dr. Stanley did is impressive enough, and then you realize how tiny a scale this is. I have already waxed lyrical about Dr Stanley in another post, so tonight, Elliott gets the final word. As I walked through the hospital corridors this evening, on my way to get yet another Vitamin C boosted Naked Juice smoothie to fight off a Mid-West cold, I thought to myself that our boy had done it: Elliott had beaten the odds. As those words passed through my mind, I found it hard to hold back the tears. A few hours into our ICU stay, one of the docs told me that most kids he sees having this sort of surgery end up getting discharged with exactly the same drugs they came in with, so we should prepare ourselves for that. Elliott came with three different blood pressure maintenance drugs; he will leave with none. Whether that is the long-term outcome remains to be seen. It will be three to four months before we know for sure. In the meantime, I am celebrating our big man Elliott, who has been without pain meds for days, who ripped out his own GI tube from down his nose after a night of hallucinogenic torment, who laughed and laughed at blowing bubbles in the playroom, who somehow beat me at a Wii driving game despite the fact that he had never played a computer game before in his life, and who has remained unreasonably patient with two weeks of doing nothing but laying around in bed, waiting for someone to come and bother him. You beat the odds Elliott, and we love you with all our hearts.

Live and Unplugged at Mott Children's

Now, I'll admit that our friend here was no Eric Clapton, but there come times in every family's hospital stay when you need something to remind you that there is fun to be had out there in the wide world. Thursday night at Mott's Children's is family night on the eighth floor, with music - live and unplugged - pizza, and a space to decompress a little. We only learned that Elliott could join the party when Monica, with her mom, Euan, and Annie in toe, struck up a timely conversation with a family in the lift/elevator on the way up. As Elliott and I arrived from his room and I scanned the resplendent scene before us, 'live and unplugged' was an apt description not only of old Clapton, but of the kids who had also made it 'out': no wires, no machines, no endless requests for blood, a bath, 'taking his weight', and meds, meds, meds.

Like Euan, not everyone was there to appreciate the music. Some of the parents in the room looked a little battle weary and were just glad of a brief reminder of the life they had left behind at home. Elliott and Euan soon got into the groove of our own particular home life: by attempting to maim each other. Elliott tried to bite his brother's wrist, Euan reciprocated by doing his best to make an incision in Elliott's other kidney. At least we knew where the nearest Emergency Room was.

Having the chance to remember that life does not typically revolve around prods and pokes, and that people do not normally wake you up in the early morning to tell you, essentially, the same thing they told you the morning before, is good. If all goes at least reasonably well with Elliott's arteriogram tomorrow morning, then we will get to return to California and to the sort of life that we have come to call normal as a family. We will get to re-member again.

 

Euan and Elliott's scuffles, and Euan's inability to stay still for a picture, are quirky reminders for the Mainwaring family that normalcy is not an unforgotten country. Yet, up in the that room on the eighth floor, and in the hallways and corridors of this hospital are families for whom the promise of normalcy is far, far down the road. I hope to remember them, as you have remembered us, in the coming weeks and months, as we pray in church for those who are sick, and for their loved ones, and with them remember those families who bear the pain of never getting to take their children home.

Hospital is a curious kind of environment. On one hand, there is an inclination that grows inside me that says, "I could get used to this kind of service". The staff at this hospital are phenomenal and always, and I mean always, ask if we have more questions, and if they are nurses, if there is anything they can get us. On the other hand, hospitals are crucibles of the human struggle for survival that can leave a mark in the soul. As a hospital chaplain, I always dreaded getting a page during the night to go to the pediatric units, because the reason was never good. Excellent service aside, we will be glad to head back to 80's F and the blue, blue sky of home, to play in the back yard, to cycle along the boardwalk by the Pacific Ocean, and to close the door at night and know that we made it through to the other side.

The backstory and the main man

Today I thought I would give Elliott a break from the limelight (his bowel did wake up in the end, with some help, and we have had a little spike in blood pressure tonight, so we have started with some blood pressure meds for the first time since the surgery, which has brought it back down again, so we shall see what the nephrologists want to do in the morning). I thought I would share a thought about the reason why we are in Ann Arbor, MI, in the first place, and a little of our backstory.

One of the toughest things about caring for a sick child is not knowing where the road is going to take you. When Elliott was admitted into Rady Children's Hospital, in San Diego, with a frighteningly high blood pressure, we already knew that he had an enlarged and thickened heart due to most likely years of high BP. What we didn't know is that the aneurysm and stenosis that they eventually found in his kidney made his case particularly rare, and that finding a doctor to treat it would not be straightforward. After two weeks, we left Rady Children's with three BP meds for Elliott and a whole host of options for treatment. Monica spearheaded an effort to make contact with around 18 doctors across the US, each of whom offered their own particular and sometimes contradictory (to others views) perspective as to which way forward we should pursue. Unlike the maps that have become part and parcel of our lives here on the inside, during our hospital stay at Mott Children's, Ann Arbor, navigating the world of sub-sub-specialty medicine is something we had to do without the benefit of a good number of previous cases to provide much in the way of solid data.

 In the end, Dr. James Stanley, the Director of the Cardio-Vascular Center at U Mich Hospital, was the one person in America whom everyone else pointed to as someone who had the experience to repair Elliott's artery. Apparently, there are around 800,000 doctors in America. 800,000 and this is the one guy who can do it. Now, I know that a whole lot of those docs do a lot of different things, but it is a curious thing to contemplate that there is one man out there of 800,000 who is recognized as being the only one who might perform the sort of restorative surgery that we desired.

So, today, Dr. Stanley made a visit to Elliott's bedside. You should appreciate that Elliott sees somewhere between 20-30 medical professionals a day (it was worse in the ICU) so another doctor standing in my peripheral vision was not exactly a novelty. Yet, when I realized that it was Dr. Stanley, the Dr. Stanley, it was all I could do to stand to my feet and appear alert and composed. It is not at all that Dr. Stanley is somehow overbearing or demanding of others attention, it is that when he stood before me, I felt like the Headmaster had just walked into the room, the sort of Headmaster who gets your attention just by showing up.

In the end, it doesn't matter if Dr. Stanley were one in 800,000 or one in 8, he is still the man who repaired Elliott's kidney, which in the end we hope might mean that Elliott can go on to live the kind of healthy and happy life that most four-year-olds in his fortunate position in America get to do. Cicero was supposed to have said this, 'In nothing do men more nearly approach the gods than in giving health to men'. I probably wouldn't go that far, but you, Dr. Stanley, are definitely a hero in our household.

The love of so many and somebody is too happy to be in hospital

Monica and I don't have a TV in the house, but our children have still become friends with some of the heroes of children's TV: Diego, Thomas the Tank Engine/Train (depending on which side of the pond you live), and the favorite, Bob the Builder. The picture above was taken just a few hours ago in the play room on our new (non-intensive care) floor, and shows you one of Elliott's more elaborate solutions to congestion on our roads: unreasonably tall cars! As with every great designer, Elliott is never happy with his product and so took the painful step of destroying (with some force) each design just as it was completed. The long suffering and excellent 'Child Life' (a program to help children and their siblings through hospital stays) volunteer picked up the pieces every time, and Elliott began to build again.

That is of course exactly what we have been doing, literally, in the case of the arteries in Elliott's left kidney, and figuratively, with life as we used to know it. Yet, you would hardly know it today. For, the truth is that Elliott's play room escapades have revealed to the staff on the unit the hidden truth: this boy is just too happy to be in hospital. Elliott's recovery has been nothing short of remarkable. He is now completely off pain meds, he has yet to take one blood pressure medication, he has freed himself from the machines that bleep and bubble, and if his bowel would just wake up we could all take a family trip to the Great Lakes.

It has been such a great blessing to see Elliott do so well. He laughed more today than he has in a long time, and even managed to make Annie laugh (sort of) when she came to his bedside this afternoon.

What do we attribute this happiness to? Well, when you are four years old, and you are told that the only thing you can eat for now are Popsicles and Jello (Jelly in English) you know the day is going to be a good one. The other reason is, quite simply, you.

If you are still reading this blog, the chances are that you are among the many who have prayed for Elliott, sent him cards, books, stickers, cars, crayons, markers, and lots of beautiful pictures and heartfelt words. The picture above is the view from Elliott's bed. He has little reason to doubt that he is deeply and widely loved.

The big banner across the top of the picture before this one was painted by his preschool teachers and friends, as were the tassels that were tied onto the quilt shown in this picture. So many of you have showered him with such an abundance of generosity that there are times when I think that he forgets that he is in hospital at all. This outpouring of love for our dear Elliott has also touched Monica and I deeply. The package that brought me to tears yesterday, as we were settling into our new room was a collection of drawings by 20 or so fifth graders, sent by one of our dear friends in northern California. The line that got me was 'compassion-filled fifth graders'. They had never even met Elliott, yet here they were dedicating a part of their day to show him their love.

It is that sort of gratuitous love - the love that dives right in with you, like Euan in this picture of him at the 'Hands On Museum' today (it's great when somebody else clears up the mess) - that has meant so much to us these past few days and weeks. So, thank you for diving right in there with us, and thank God for the remarkable resilience of the human body, particularly the one belonging to our son.

What the Beatles didn't teach us about hallucinogenic drugs

Everything is funnier in hindsight. Last night, it was harder to find the funny bone, as Elliott, poor thing, woke several times each hour, in a startle and with a cry for 'Daddy!!'. While it is nice to be wanted, after the 20th time, the niceness wore off. The most dramatic wakings involved Elliott sitting bolt upright in bed, another he stood straight up, unaided, on his bed (at this point he had not stood at all since the surgery), and the finale, at about 6am, was Elliott pulling out his NG tube from down his gullet, as if to say, 'that's enough you lot, I'm going to sleep', and he did, thank the Lord!

I suppose all that seems kind of funny now. What was not so funny at the time was Elliott's state with a new pain med, Dilaudid (hydromorphone) we had switched to following some unpleasant side effects he was having with the morphine (itching, lots of startles, and he stated at one point that the hospital building outside was moving). Well, Dilaudid's side effects in our little guy's body made Morphine look like a sip of Tylenol by comparison, with the worst impact being what seemed to be hallucinogenic experiences: he reached for objects that weren't there, looked at his hands and arms as if something was on them, and was generally very freaked out. I was too, and this morning we gave Dilaudid the boot, and we have opted for the devil we know returning to morphine because it looks like he might be able to take medicine and fluids by mouth tomorrow. Thank the Lord again!

The good news out of what really felt like a worrying few hours last night is that today Elliott passed some gas (which is not really me being over-zealous with the details, it is how we get to know that his intestine and bowel might be waking up enough to receive fluids and eventually food and so get Elliott out of the ICU) and walked. That was great, and really helped with pain. He also got a visit from his Momute (great for both of them) in his newly improved post-Dilaudid and post-walking state.

Hospital, for us at least, is all about these daily rises and falls. Thankfully, the rises have far outnumbered the falls and we are so blessed by that. We are also blessed by your prayers and love. Elliott doesn't really comprehend the expanse of places where people are loving and praying for him: from California to Virginia, Texas to Kent, Scotland to India, and rather neatly, St. Andrew's, Ann Arbor to St. Andrew's, Pacific Beach. We do know that, however, and I have to say that in those moments last night when it was truly scary to see my son just that little bit too much beside himself, knowing that we are held by your prayers and by the God to whom we look for hope gives us tremendous strength, for these nights and days and for all the days to come.

When pictures say it all

Could there be a better place on Earth for Elliott right now?

Elliott has been much more alert today: talking, awake, and able to move and sit up as we had hoped he might today. Progress...day three, ICU