We were awakened this am early by our night nurse informing us that Melissa's heart rate had not gone down, as we had hoped it would. Instead, it was up. She was tachycardic again. So, back to the hospital. We don't suspect it's anything major, or that she will be there any longer than to get some fluids via iv. But it gives me the chance to put together an update -- since I'm up and I might as well stay up. Actually, I just went into work early.
Melissa has has a tough couple weeks, actually. She had a stomach virus that produced some vomiting, but that more importantly has kept her from being very responsive. She has gotten over that, but bouncing back has been slow, and she is only now getting back to being more responsive. Unfortunately, however, she has also been having entire body length spasms, mostly on her left side, for about a week now. This has meant that we have been treating her with a pain killer that knocks her out. We just found out that the reason for this was that her sodium level was low -- we all cramp when our sodium level gets low -- so we adjusted her medication that helps her regulate her urine output. The problem? It causes her to void so much that her liquids get low, and she gets tachycardic. This all pints to the difficulty of managing her complicated medical situation. Two steps forward, one step back....
We also visited the radiation oncologist -- something like the 8th or 9th of Melissa's doctors. What we found out was sobering. Though there is no evidence of the benign tumor's resurgence, there is about an 80% chance that it will. There is also a 20% chance that it won't. Percentages. That's the world we live in. All in all, the news was about the best we could have gotten, especially given that a year on, the latest MRI shows no return. That's good.
Yesterday was a big day for Melissa. Her mother is relentless. First, she loaded her in Gigi's van -- not a wheelchair van -- and took her to her eye doctor so her new glasses could be fitted for her. Interestingly, and inexplicably, her vision improved as a result of all this, going from about 20/400 to 20/250 in each eye. Her difficulty is seeing things close. Anyway, Lawanna got her there, got the glasses fitted, and then took her for a hair cut, to Supercuts. Her new "do" looks so cute. Very short, very easy to deal with. It brings out her face. But doing all that -- two things -- is so taxing. It took about 5 hours, two in-and-outs from the van, and Spenser and Jaimie, one of our care-givers, helping out, all while Spenser followed the van with the wheelchair. I say all of that just so those of you who don't have experience with this kind of thing can get an idea for the logistics of this kind of thing. So, after a day like that, when we were awakened this am early, Lawanna was very, very tired.
West has also been sick this week with some kind of intestinal bug. Poor kid. He has not vomited, but the other end has been very active, and his poor bum is so sore. We have had to hold him a lot, which is, of course, a two-edged sword. We love that he is so affectionate, but it's hard to get anything done too. But he's at Gigi's, so he is very happy, being spoiled by great grandma.
A friend brought him a wagon. It's really cool, not like the Red Flyers we all grew up with. It's plastic, with two seats, and even a door. I took him for a spin the other day and he loved it, sitting upright, able to look all around. He's changing so fast. He has started screeching, actually. It drives me crazy. He sounds like a raptor or something. And it's so penetrating. It's almost worse than his crying. And he now points at stuff that he wants, and then screeches. But he's also starting to say "ma" for more. He says it, then he points, then, if you're not fast enough, he screeches. It's both hilarious and way too much. And he's given up on crawling on his knees. Now he just scurries on his hands and feet. I'm now calling him Mogli. He's so fast. And because our first floor is all tile, you can hear, slap, slap, slap, slap, as he races from one spot to another. Then he stops, sits, looks back, smiles, and then heads off. And when he is upstairs, and you are downstairs, he sounds like a herd of large animals. Hilarious, and so cute. (Grand)parenting -- priceless.
So, we continue to be blessed with the two joys of our lives -- Melissa and West, both the absolute joy of our lives. Melissa is so beautiful, and caring for her daily has brought out such a bond of affection. If love is doing for others -- and it most certainly is --
we get to love her so much. Mostly passive, she has to receive it, and we are so thankful that she knows us, and that it is us caring for her. This morning just before she headed off to the hospital, I was able to explain to her what was happening, and with that new haircut, and those penetrating hazel eyes looking intently back at me as I spoke with her, I was struck by how beautiful she is and how much I love her. And yet, it is so sad.... And West is just the opposite: so active, so engaging, and yet just as beautiful. And yet it is so sad: Brian works away five days a week, so he misses his wife and son; Melissa can't really participate in every and each milestone West meets; and West has neither his daddy or his mommy the way he would otherwise. It's just all so sad -- and beautiful.
Team Melissa Update
All the one-year anniversaries of the trauma are past.... All the talk I have engaged in since last March about "the long haul" of this kind of thing seem defined by a haul much less long than the one we're in. Behind it all was a faint hope that really months, not years, would bring more discernible improvement than we have been able to enjoy. The haul seems like it will be longer than I thought in those early months. But everyday things happen, important things. But just as we all have had the experience of taking fewer pictures of our children as they get older, so it feels to me like I have less and less to say, or less and less motivation to keep talking about what seems to be a rather perverse kind of "Groundhog Day." I think that's how it's supposed to be, or, that's how it works, but I've never been through this. Each new day is really a new day, filled with experiences we have not yet had, if that makes sense.
Several people have sent us meals via takethemameal (see the "about" section here on FB if you are interested). It's been really nice. Thank you to all. Today, I talked to one woman who turns out to be the therapist who "took" most of Melissa's clients/patients when she became ill. It was very moving to speak with her, for the first time, after a whole year. Melissa recently indicated to us that she wanted her phone, apparently so she could check on her clients, so she had been thinking about others in all this, and then I get a call (and a meal) from the person who helped so many of them. We don't often think about those people, but they were traumatized too. Only those people -- like me -- who have depended on a therapist can fully know the fear of "losing" a therapist, but they were victims too. I'm just glad that Melissa's friends and colleagues so effectively took care of them. Obviously, Melissa wanted that.
Well, things are good.... We had a bit of a scare on Tuesday evening, as Melissa's heart rate worked its way into the 130s. She took an ambulance ride to the hospital, and after 6 hours, and by 3am, they determined that the chest clod that's been going around (our house too) probably had gotten her. An antibiotic treatment and some tests were administered, and we had her back in her own bed, at home.
As has been clear on SMC on FB, she is progressing, even if there are a few steps back once in a while. We are still figuring a lot of things out, really. There is just so much to stay on top of. West adds to the "adventure" of all of it, as he is now crawling very fast and, therefore, making his presence known even more than we are used to. The "speed" of things is seeming to increase, even if our routine is now better known. He too has the chest cold. And his first to upper front teeth are finally through. Every day it's something new with him.
Meilssa is "working" a lot. Everyday she is out of bed two or three times, and now for several hours. She is being stretched and made to move "on the mat," rediscovering very basic but important things about movement. We are careful, however, to also have her rest enough so that when she does work, it's enough to challenge her, but not so much as to "knock her out." In the last week, I may have noticed her being awake less, so we want to make sure that is not because we are pushing her too hard.
Even with all the help we have accrued, we are still always exhausted around here. It would be one thing to have just Melissa. That would be exhausting. But to have West also adds to the challenge. The physical part of it is plenty, but the need to stay vigilant presses in a different way. We "go" literally from the moment we awake until the moment we go to bed. It sometimes feels like too much -- though it's not. But it sure is tough. Even today, as Brian got a three-day weekend and therefore has been able to spell me, I'll be "away" for several hours but am tired even as I sit in my office trying to catch up on things I have not been able to get to. I'm sure it will feel at the end of the day that I have just caught up. Thankfully, I have been able to get back into the practice of playing tennis two or three times a week, and to be around my great friends who also play. But there is no getting ahead -- she is always there, needing a vigilant and caring eye.
So, that's how things are, in a brief nutshell. Nothing much new.
Grace, Peace, and Love
Papochka (Melissa's dad)
A note on the pic: Mel and her super-dear friend Abby, in better times. That energy and beauty and life are just parts of what we so miss and the reason why we keep pushing her and ourselves -- to get it back.
Yesterday (Friday Feb 13th) started at 5 am when the ambulance company showed up to take Melissa to SF to see her neurosurgeon, Dr. Theo(dosopoulos). Arrived and were in the office by 10, out by 12, and back in bed by 430. She travels well.
Seriously, in layman's terms, Dr. Theo was exceedingly impressed with Melissa's progress. We showed him a video of her talking back in December, and told him of her recent improvements. Basically, he said she could continue to improve, or stop at any time. But he also made it clear that what she is doing is clearly cognitive in nature, and it's her brain that's healing, and it's her neuropathways that are firing -- not the drugs she is on. They provide other benefits, but none of them enhance or decrease her cognitive abilities. Even if they sedate her, that's different. The upshot is that we have been right about her -- she has not only been "in there," but she is presently "in there." He also said that there is no data on which to base any prognosis, as we have known.
I'm not quite sure how to say just how much we love Dr. Theo. We cry every time we see him -- and he does too. It's the Greek in him. And my goodness, he is so smart. More importantly, he loves Melissa, even though he has only ever had one conversation with her. And his PA too, Tracy, is just the bomb. I did not anticipate how emotional the trip would be. It seemed like something to endure (and the nine hours in the car was, indeed). But when I walked in the office, it hit me -- these are the people who saved Melissa's life, and who have been with us every step of the way.
As always, there are just no guarantees. But he made it clear that the brain "shuts down" to save itself -- hence, a coma. And in the same way, it "shuts down" everyday, sometimes several times a day, when it can't do anymore. It's like studying "too much" -- the brain says "enough." Well, that's what hers did 11 months ago, to save itself, to preserve its life, as it were. And he also said it will take likely years for it to heal however completely it will heal. It all was both hopeful and sobering at the same time.
Here is a recent post from our Support Melissa Carleton Facebook Page, but without all the pictures. She's doing really well. :)
What did Melissa do today???
PT from 9-10: she contracted her right inner thigh muscle when asked to pull her knee inward; she kicked her right foot in sitting position; she held her trunk more stably; she was sitting up (assisted) for 30 minutes.
From PT into her wheelchair for another walk, this time around two blocks and across the big street (Palm Ave). Today was a beautiful winter day in Fresno -- 73 degrees. This morning was absolutely gorgeous. Sun shining, little warm breeze. West and Norma went with us. All total, she was in her chair on that stretch for 1.5 hours.
We returned her to her bed and laid her on her right side, as you see in the picture. We're rolling her on her side not only because for so long she could not be on her side like that because of the hydrocephalus and her lack of a bone flap, but also because her lungs need it. More and more, her lungs are regaining strength and capacity. Note she is also capped while resting -- the trach is capped and she is breathing just through her nose and mouth. Note her oxygen saturation level is 97% and her heart rate 82. For her that is some of the most relaxed resting she has done in a very long time. And she looks so beautiful, having earned her nice little afternoon nap.
She had a nice bath this evening, including a scalp massaging, head scratching shampoo -- ahhhhhh. Then it was time for more work. After range of motion with her legs, feet, hips, midsection, arms, chest, and neck, she was back on the bedside. And this is where we got the best gift of the day.
First, after getting her to relax her right hand enough to take the hair brush in her hand, I asked her repeatedly to raise the brush to brush her hair. We waited, then repeated, several times. Then, slowly, she raised the brush up to where you see it and held it there. Her right shoulder was very tight -- we could not get it loosened up well -- so that is as high as she could get it. But she followed the command, and she tried to use the brush! Then, after we composed ourselves, I asked her -- again, several times -- to give me the brush and, as you see, she did! BIG. Little, but BIG.
Then we put her in her wheelchair again and she and Amanda, a Fresno State nursing student who is doing a great job with her in the evenings (so we can get to bed at a decent hour), watched some TV together. Then, back in bed after another hour and 15 minutes in the chair.
All totaled: Up at the bedside for PT for an hour and 45 minutes, almost 3 hours in the chair, and a walk to boot. Oh, and she "brushed" her hair and gave me the brush when she was done. (And, yes, I cried -- and so did Amanda).
Things are going well these days -- except that Brian has had to go back to work. Work is not a bad thing, of course, but Brian has been fortunate, as has Melissa and West, that he has not had to work at his job since the trauma. He is finally healed form his injury sustained in the course of his duties as a sheriff's deputy, and he will be working int he courts in Santa Cruz County for the next 8 months. He will be home on the weekends, and we will all miss him. Just as importantly, he will miss us.
Two of the things we've been excited about Melissa's move home is the time she can have with West and the family, and us being able to take her on walks around the neighborhood. Today, as you can see, we combined both -- West and Melissa on a walk together. Melissa's sister, Sarah, is out from Missouri for five days. We have enjoyed her so much. And sometimes West gets to happily hang out on momma, and with Gramma, as you can see in the picture.
The other thing we are excited about is being able to nurse her to as much wholeness as we can, and as she can accomplish. The third picture is of Melissa clasping her own hands. It might not seem like much, but it's the first time she's done this in months. It's therapeutic terms, she is kind of helping herself here. We had to arrange this for her, as her fingers on her right hand are still toned. Another good thing that's happened is that the size of her trach has been reduced from an "8" to a "6." This week we might change that out to a "4," all part of the process of weaning her.
So, a lot of good has been happening since she returned home last Friday. Note that we are not able to post as much as we have in the past, basically because we are providing so much of her care, and West's too. It's really exhausting, even with the nursing help, and all the meals our friends have provided.
As many of you know, three days after Melissa's arrival home we had to take her to the ER via ambulance due to a high and unexplained heart rate, intense pain (which she expresses as facial expressions and agitated movement), and occasionally, too low blood pressure.
It looks like we finally have an explanastion of why Melissa’s heart rate has been so high the past week. She does not have any infection. Melissa has a cardiac disease called Takatsubo cardiomyopathy. This is a stress induced disorder of the heart where part of the heart's muscle becomes suddenly weak and is pumping less blood volume than it should. This causes the heart rate to rise. The disorder is also known as "broken-heart syndrom" because it is a kind of acute cardiac failure found in women who have lost their spouse (originally this was recognized by doctors in Japan). The condition is painful, as it is a kind of "heart attack," although when treated, not deadly. Melissa has likely been experiencing a great deal of chest pain over the past few week or so, even prior to her discharge from Kentfield.
In my opinion, "broken heart syndrome" is about the only disease that makes sense for Melissa. My sleepy wife has had to endure so much this year and has had to miss out on her new family in ways would break her heart. I wish she had an injury that could be repaired by a transplant. I would gladly give her my liver, lungs, heart, or brain to give her a fair chance and being with her family.
While Melissa is at CRMC we are ensuring that Melissa’s given constant pain management while the doctors try to slow her heartbeat and give her heart some time to rest and recover to normal functioning. Melissa is also being given beta blockers and they may consider additional measures if her her cardiomyopathy does not improve over the next week. The condition, although appearing grave is very survivable and Melissa should be fine in a few weeks.
Fortunately, Melissa's mother works as an NP at CRMC and is able to check in on her from time to time throughout the day, so there is not the same sense of having the family pulled apart.
It may be that the stressor that caused this condition was an infection that she had, but it also could be the stress of leaving Kentfield, the stress of the chaotic discharge, or even missing the holidays which, for Melissa, would have been a profoundly painful experience even when healthy. If anything, it suggests that Melissa may be more aware of what has been happening than we give her credit for and it is a good reminder for all of us to maintain a supportive and as stress free an environment for her as possible.
Fresno's Community Regional Medical Center is giving Melissa very thorough and comprehensive medical care. It is a teaching hospital that is part of UCSF and is excellent. Melissa is in the Neuroscience unit and being seen by internal medicine, neurology, and cardiology. I believe that she is in very capable hands and we look forward to her coming home to us, again.
Thank you to all that have helped us with bringing Melissa back home, and who are now, again helping us while we try to get her back home once more.
Brian Lande (Melissa's Husband and West's Dad
As of this writing, 1,611 people in 9 ½ months have contributed $123, 291 to Melissa’s gofundme page. Hundreds of others have contributed to two fundraisers, one put on by hundreds of Melissa’s Soup Community friends, and one put on by our dear tennis playing friends, the Melissa Carleton Doubles Challenge. Hundreds of people have purchased on a registry virtually everything we have ever needed for West – food, diapers, clothes, strollers, and more. Long-time friends and perfect strangers, co-workers, acquaintances, foreigners, friends of friends, patients and clients, police personnel, you name ‘em, have given what has added up to so very much. Housing has been donated that would have cost several thousand dollars per month. All this for Melissa, for West, for Brian – for us all. Why we have been the recipients of such largesse when others, thousands of others – some of you – have not, is beyond us. We wish everyone in similar circumstances could benefit from the love and graciousness of thousands the way we have. If we never received another contribution of any kind, we can honestly say we have received over and above anything we ever have felt like we deserved. As I have said before, and will say again, “thank you” is just not enough, or it does not feel like enough, but it’s all we can say.
Along the way we have done our best to be graceful and grateful, and to express it, regularly. We personally have thanked every single contributor on gofundme. We have tried to respond to every person who has given in any way, though I’m sure we have missed some. We have acknowledged the now thousands who have commented on our posts. And every single item that came to us, such as clothes, will be given away when we can’t use them. We now have four boxes of clothes for the local women’s shelter, and numerous toys that West has already outgrown. We just gave three cases of unused newborn diapers to a friend whose grandson is in need of a kidney transplant and in the meantime uses three diapers for each diaper change because of shunts that must be covered. It’s only right that we do that. My son recently said to me regarding thanking people, “Dad, these people probably never expected to hear anything from us. They just gave from the goodness of their hearts.” He is right, I’m sure, yet I answered, “But it’s the right thing to do. Saying ‘thank you’ and expressing gratitude is always the right thing to do.” “And besides,” I added, “Your sister would be horrified if we did not.” She will be proud of us for having done so, and for giving back as much as we could. Every interview I have done on camera after the baby was born, I have mentioned this – the need to express gratitude – even if the TV stations have not generally included it. We want everyone to know how thankful we are, and that we know there are so many others struggling as well. One disturbing pattern I have noticed in all of the media pieces is that they always mention the amount we have received, sometimes in a way that sounds to me like it’s some kind of competition that we’re winning – not a necessity. As I told Katie Utehs of KTVU, I’m embarrassed that in spite of our good jobs and good insurance benefits, we still can’t pay for Melissa’s care long-term. This is a national problem. There are 325,000 traumatic brain injuries in this country every year. That means that there are thousands of other families who find themselves in similar circumstances, and that’s just considering brain injuries. Unfortunately, to say the least, we have become just one of thousands of families in similar situations, which makes us unexceptional – except that we have been treated exceptionally well by thousands, perhaps tens of thousands, or even hundreds of thousands, due to social media.
So, now that Melissa has come home, it is time to answer the question, what can people do to help. First, let me say that if you think enough has been done for us, please give to someone else. That’s what we would want. That’s what Melissa would want. Find someone else who needs, and give to them. Or, wait until enough time has passed that you think another contribution would be justified. But if you want to help, at the risk of sounding crass, the thing we need the most is money. It will take Melissa years to recover, and the cost of that care will be very high. We can’t right now say how much we will need for the first year, or the second or third, but we know that what we have will not be enough. We figure we have enough for the first year, and perhaps a bit longer, but past that we can’t presently cover. Costs are high – just one 12-hour shift of nursing help runs about $240. We need that every day. Just covering nursing for a week would be $1700. Just to get enough sleep, we will need at least 8 hours of nursing a day. Some of that will eventually be defrayed with IHSS and IHO (county and state assistance programs), but what we have now will not last us long. We have years to pay for.
If all you can do is pray, pray. If all you can do is “share” our page, share it. But if you can do more than that, we hope we are “worthy” of your doing so. Personally, I’m not sure what “worthy” means here, and I’m not sure we are worthy, and I’m certain others are more worthy. But one thing we have learned is that the world is filled with good people, and if they want to express that goodness by helping us, and if it is more blessed to give than to receive, as we believe it is, then we will receive with thankfulness for the blessing of others being willing to give. It’s good for us, to be sure, and it’s good for you. We will continue to do our best to use it to heal Melissa and raise West, but also to share our own goodness in whatever way we can, though that is limited right now by our circumstances – our focus on West and Melissa.
In the last 9 ½ months we have also received so much good advice from so many. We try to read every comment to every post and note suggestions. We are compiling a file of all offers and volunteers and advice. Now that we are home, and Lawanna is able to tap into her considerable list of co-workers and doctors at CRMC, we have assembled a very qualified team of case managers that know the local medical care landscape very well. That is so helpful. It also reminds us of how fortunate we are, and how unfortunate it is that so many in our circumstances don’t have that kind of expertise and good will to draw on. Even so, we appreciate all the advice and creative ways of providing for Melissa many of you have offered. We will continue to take them seriously.
So, if you are moved to give to us, please do so. If you are moved to contribute to someone else, please do that. And if you can’t give, we understand completely. Please “pray” for us, whatever form that takes for you. We so appreciate even your consideration and are moved to tears frequently by your largesse toward us.
Another milestone has been reached -- our beloved Melissa is finally home. What a Merry Christmas this has turned out to be. We are elated… ecstatic… that after nine and a half months of agonizing waiting and immense amounts of patience, of real suffering and great joy, Melissa, Brian, and West will all be under the same roof, and we, her family, will be able also to see her and be with her everyday. Our family will be made whole, even if the reality is different than for what we have intensely hoped.
Melissa has worked so hard for this. When called upon to give every ounce of effort she can muster, she has done so. When required to be patient -- with caregivers, family, sickness -- she has done so. Day after day, she has lain in her bed, looking at the same walls, hearing the same sounds, enduring the same rhythms. It has been "work" -- a train load. She is the true hero in all of this. Her goodness and our knowledge that she would do nothing less for us has spurred us to be absolutely devoted to her. Whatever we have done pales in comparison to her devotion to life, and to love, and to her family, especially Brian and West, and to herself. And now, every day, every morning, she will awake to the sounds of home, of family life, of love. We can't wait to see her and West get to know each other again, to teach West how to be gentle with his mommy, and yet to crawl all over her too, whether in the bed, or on the mat, or on her lap, as we take her for a walk in the neighborhood. What a blessing this is, to have her home. For each and every one of you who helped make this possible, from the absolute depths of our hearts -- thank you, and thank you again.
And Melissa is not the only one who has worked tirelessly. Her husband, Brian, has committed himself to her in ways almost unimaginable. I can't say enough about what we've learned from him about devotion, and the meaning of "for better or worse." He is just the best. Family has contributed in also almost unimaginable ways. Lawanna has worked so hard, unable to take a leave from work, all the while "showing up" for her patients and coworkers when she could hardly lift herself out of bed for grief. She has taken care of our boys, and the home, while I have been away. She has made the trip to San Franicisco also, so many times. Just as important, she has counseled Brian about Melissa's care. And she has loved her beautiful daughter in immeasurable ways, to say nothing of her devotion to West as a loving and caring grandmother. Gigi (Lawanna's mom, Melba) has been there for Brian and West from the start, willing to uproot herself and move to San Francisco, even while her own family, and her beloved husband Jack, who passed away a few months ago, had to manage without her, as she provided a steady, and confident guiding hand as Brian adjusted to life as a father. Family (Melissa's brothers, Zach and Spenser; her sister, Sarah; her niece, Grace; Brian's brothers Kevin and Neil, and sister, Katie) have unremittingly responded whenever asked, in small ways and in big.
And friends, long-time friends of Brian's and Melissa's and ours, have spilled their hearts out in helping in whatever way they can. Friends and strangers alike have fed us, housed us, encouraged us, contributed to our cause in immeasurable ways. And two hospitals (UCSF and Kentfield), complete with their caring doctors, nurses, therapists, social workers, and various staff, saved and preserved Melissa's life, thereby allowing West to be born healthy, and assuring Melissa's optimal health and our blessing of being able to be with her every day since March 11. Names abound, and I would leave someone out for sure if I attempted to name all, but they all deserve our thanks. You don't spend over nine months at two hospitals and not develop a love for dozens, even hundreds, of people who care for your loved one. And it is love. Thank you to all at UCSF and Kentfield. Our hearts are full of appreciation for you.
We are the most fortunate of families. We continue to ask you all to pray for us, and to do whatever your heart leads you to do for us. The kind of care Melissa will need for a very long time is intense and expensive. Even good insurance like ours does not cover everything -- unfortunately, not even close. As thankful as we are for the considerable amount of money raised so far, we are conscious that more is needed. If you are inclined to contribute, please do so at our gofundme site (in the "About" section on Support Melissa Carleton FB page). If you wish to contribute in other ways, please let us know. We will post very soon a more specific list of needs we have, should any of you wish to assist us with various provisions. And from time to time, we will do that also.
As for Melissa's condition, she is presently still in what's referred to as a "minimally conscious state," technically a coma, but on the wakeful and positive end of the coma spectrum. Some of her recent scores on assessments tests of her condition have been among the highest she has ever had. She hears us, tracks us with her eyes, moves all of her limbs, turns her head, has started mouthing words, and is improving slowly, but still can't help herself in any meaningful way. In a way, she is like a quadriplegic, but with the very real hope that she will grow her way out of it, or, rather, into helping herself more and more. She is able on occasion to signal a yes or no. She still has a trach and a feeding tube. In early November, she had a shunt installed in her brain to help diminish the effects of the hydrocephalus she had contracted, and we are presently in a state of waiting, and a place where she must come home because she is not ready for acute rehab. Her insurance has been very good to us, but they can't pay for hospitalization forever in a case like Melissa's. We have brought all the equipment she will need into our home. We will do our best to turn our place into a personal rehab center. We will have as much nursing as we can afford, and we will be happy to give her much care too. We still have West to care for, and Brian will return to work in January, and Lawanna will keep working. Fortunately, I have 14 years of sick time to use in family medical leave and will be "off" until August. The boys will kick in, and many of our friends and family will help. Without overstatement, it will take a village, as we have been saying, and we are happy about that.
So, a new chapter begins, and we could not be happier. Melissichka is finally home, where she now belongs, enjoying the light and warmth of our sun room in ways it has never nurtured anyone, and we get to lovingly nurse her back to health. Cherish your children, all, and love your family. Merry Christmas and Happy Holidays to all of you.
Today is my Birthday. So many people have been wishing me a happy 33rd. I wish it could be happy. It isn't unhappy. But this birthday just can't be satisfying without sharing it with Melissa. But, I am with Melissa and that matters to me more than anything. Now that Melissa's skull is intact, I got to hold her, in her bed, and rub her toned arm. Just being able to hold her again and to not worry about whether or not it is safe is so significant for me and I hope for her. I think she relaxes when I hold her, her tone becomes more relaxed, her heart rate goes down a bit.
I have not posted much about Melissa's condition for the past month or so. Melissa has had so much happen in the past 4-6 weeks that it is difficult to say what her condition is. Melissa has made some gains since she had her shunt put it and had her shunt adjusted. Melissa has regained some range in her toned right side meaning that she can now fully extend her arm at the elbow, she can have her arms raised to 90 degrees at her shoulder, and her fingers are easier to extend. Melissa still experiences pain when her right arm and hand is ranged, but it seems much less intense than in the past.
Melissa is also wakeful much more often and sometimes for 8-10 hours. Melissa still cannot communicate effectively but her vision is becoming quite good. Melissa also cannot produce behavioral responses when asked. That said, Melissa has become increasingly able to spontaneously organize complex motor movements. Melissa can intercept the hand of a nurse or therapist and push it away. Melissa can also touch her face and wipe her mouth with both hands. She doesn't always do this, but she does now do this several times a day. Yesterday, for the first time in nearly 6 months, Melissa placed my hand on her cheek.
I hesitate to mention her next improvement because I don't want people to overreact and read to much into it. But Melissa has begun trying to speak. Over the past month Melissa has begun producing not only lip movements but full lip and tongue articulations. Sometimes those movements produce clearly articulable words. Sometimes Melissa strings three to five of these into full sentences. Sometimes, when Melissa has her speaking valve on we can understand what she is saying because we can hear it. But, Melissa can't produce these mouth articulations or verbalizations on command. Yet, sometimes, when I ask Melissa to repeat what she has said, she is able to do so. It is very hard to make sense of what Melissa is saying. Sometimes she may be producing "word salad." Sometimes, like today, she seems to be saying, "Hello, how are you?" to her therapists.
These are all positive developments but they have developed slowly, they frequently disappear for days at a time, and it is hard for me to know if she will continue to improve.
Melissa and I watch videos of West on Facebook. Melissa frequently smiles during the videos and is certainly paying intense visual attention to the videos. I am sure that she knows that what she sees is West and that West is her son.
Next month, I will be returning to work, probably around the time shift change at the Sheriff's Office. Many people have been asking me if I am ready to go back to work. The reality is that I have been ready to go back to work for months and would have if I had been able to. My hand is finally regaining strength, the pain from my injury is largely gone, but I am still working on range of motion and flexibility. I don't worry about doing the job. I love police work and I love working with and helping people. I want to go to work and I need to go to work to support Melissa and West. There is nothing more important to me than being able to ensure that both Melissa and West get their basic needs met.
That said, what is hardest about going back to work is that I won't get to see Melissa or West. It has already been a great sacrifice to have West move to Fresno to be raised by his grandparents, his uncles, great aunts, and his Gigi (Melba, his great grandmother). West is loved and well taken care of and so I bear his absence because it is what is best for West. But the greatest weight, for me, is knowing that I soon won't be able to be with my wife and knowing that she will be alone in the hospital. I also know that Melissa needs me to work, keep our benefits, and keep our future bright and alive. The Sheriff's Office, unsurprisingly, has been a constant source of support and they are doing whatever they can to make the transition back to work as smooth as possible.
Over the next month I will be trying to sort out housing in Santa Cruz, work schedules, and how to spread my time between Melissa (Kentfield, CA), work (Santa Cruz, CA), and West (Fresno, CA). The coming months will be some of the most challenging. But John, Lawanna, and I will, as always, drive on, adapt, and improvise to make sure that the people we love are cared for.
Thank you all for your continued support.
With much gratitude,
Brian Lande (Melissa's husband, and West's dad)
Brian and Melissa are a match made in heaven. Brian is a deputy sheriff and Melissa is a Licensed Clinical Social Worker who does family, couple's and children's therapy. Not long after their fairy tale wedding in July 2013 these two had great news. They were expecting a baby boy in June 2014. Melissa's pregnancy started well enough, but eventually became problematic, and after a few months of headaches their world came crumbling down when she was diagnosed with a brain tumor. Before the tumor could be removed, on March 11, 2014, she had what would turn out to be a debilitating seizure. She was rushed in for emergency surgery, but she slipped into a coma, in which she remains. For 10 weeks Melissa, in a coma, struggled to keep herself and her unborn child alive. On May 22nd, 2014, against all odds, Melissa, still in a coma, gave birth to a healthy 37 week old and 5lb 9oz boy, West Nathaniel Lande. Melissa has fortunately been able to move to a rehab hospital, where she is fighting to wake up. Brian and Melissa's family remains daily devoted to Melissa and West. They know that getting Brian's wife, and West's mother, home and healthy is far in their future. Your entire donation will go to the family and will be spent on Melissa's care, present and future. With your help we can keep Team Melissa going strong. Along with you, we say, Go Melissa!!