Home!

We are all home, and although we returned a little late (4:30 PM) it is wonderful to be here. We never received a diagnosis for Loki, but I never heard of the results of the virus test. I still suspect a respiratory virus. We hope that he sleeps well tonight.

I will add, though, that Loki is now on eight drugs daily! Zantac (ranitidine) and Prevacid (Lansoprazole) for reflux; Flovent (fluticasone, a steroid), Xopenex (Levalbuterol), and Prednisolone (another steroid) for his breathing; Augmentin (Amoxicillin and Clavulanic Acid, antibiotics) for his ear and g-tube site infections;  bacitracin ointment for his g-tube site infection; and a vitamin. About half of these should be stopped in the next week or three.

Thanks for all your words of support during this latest medical incident!

Quick Thursday evening update

Loki is gradually doing better but will stay in the hospital at least one more night. He barely coughed today, except a bit while sleeping. It remains unclear to what extent his cough is gone, versus just being suppressed by albuterol. The albuterol doses were reduced from every three to every four hours. We'll be sent home with some to use as needed. Loki does not enjoy receiving it. We will put a little mask over his mouth and nose, and he must breathe the gas for ten seconds, four times per dose.

There is still no diagnosis, but a respiratory virus is likely. In a strange way, we hope it is a relatively severe illness, like respiratory syncytial virus. If this is how he responds to a common chest cold, then we are in for trouble. But if this is RSV or similar, then his response is more typical.

At the hospital, he also received a daily steroid and a new antibiotic for his ear and g-tube site infections. This is all in addition to his two medicines to fight his reflux.

I spent most of the day at the hospital with Loki, while Mom was at home getting some rest. She is at the hospital now doing another overnight. This is not an ideal wedding anniversary, but I suppose we should not be surprised by our Trickster. I share Mom's sentiments. While it is reassuring that we do well as a couple during these challenging times, I wish we could just have some normal time.

Today Luna visited and dropped off a huge amount of delicious food, coffee, magazines,and books and balloons for Loki. She went above and beyond, and really brightened our day. Thanks!

Hanging in there

Loki is going strong at Children's Hospital Oakland. Albuterol every 3 hours, steroids and antibiotics seem to take their affect. Loki is tired yet hyper thanks to the adrenaline in albuterol. I wish we had a camera yesterday evening because it would have been a movie worth watching. Loki was WILD and hilarious. He moved, screamed, laughed, jumped, talked, kicked and pushed buttons non-stop for about an hour. We got a quick look into the kitchen called ADHD. WOW......

We have no idea yet as to when Loki will come home. We are waiting on test results and he needs to be able to handle albuterol every 4 instead of 3 hours before he can be released. Please, please let this be soon.

The emergency room stay was intense as it lasted 10 hours and Loki got scarily ill for a bit there. We found out there were some shootings (part of recent series of Oakland teenage shootouts) so obviously Loki was not a high priority. After
moving to the 4th floor our stay has been pretty good though. We have had great nurses, nice doctors and it is pretty quiet.

Today also marks our 8th wedding anniversary. I would have loved a date with my handsome spouse, yet we are taking shifts in the hospital.

Taking shifts is something we have gotten really good at. We have shifts for feeding, sleeping and yet again for staying in the hospital. How I would love to spend some relaxed time together with the man I married eight years ago. We promised to stick together in sickness and in health, during the easy and the hard times. We promised to support each other to grow together and as individuals. We promised to pay attention to ourselves, so we could pay better attention to one another. I think we are doing pretty good job at it. It has not been an easy year and it is not easy now. Whenever we think we soon may be able to let go our guards and relax, we are quickly shaken up by our reality that is Loki's health.

However, I think we are hanging in there. I wish though we could move on from hanging in there to doing well, or great or even fantastic. I wish we could have really celebrated father's day and my birthday. I wish we could happily prepare our trip to High Sierra Music Festival next week and I wish we could just be..... just be the people we are when we are not constantly under so much stress.

I am very proud at how we are able to handle our situation and still love each other so very much. We generally get along so well and I could not imagine anyone else I could move through this much stress with relatively happily. But man am I tired!

I hope we get a chance soon to sit down and enjoy each others' company for a few hours without worries, without interruptions and without needing to remind ourselves to take a deep breath. I hope we can celebrate 8 strong years together, reflect upon the paths we have wandered and fantasize about the exciting adventures that lie ahead.

I am going to take a nap as my two favorite men hangout in the isolation room at CHO!

Back in the hospital!

Loki was admitted to the hospital today for a serious cough. We still do not know what the cause is. He is spending at least one night there.

He always coughs quite a bit from his reflux, but during the weekend his cough became more severe and different, wetter and more "hacky." On Monday, Mom took him to the pediatrician, who told her that Loki likely contracted something that has been circulating among kids, whose coughs are lasting for weeks.

The situation became generally worse. Mom has been awake half of each night comforting Loki. This morning (Wednesday) she again took him to the pediatrician, who advised that he go directly to the emergency room. So they go and spend nine or ten hours in a private room within the emergency department at Children's Hospital Oakland. He was later officially admitted into an isolation room in the intensive care nursery. This hospital is the place of Loki's second of three NICUs and where he spent Halloween.We don't like it much, but it is conveniently close to our house.

Loki did not respond much to an initial one-hour treatment of albuterol delivered as a gas. But a second one, combined with suctioning out a significant amount of mucous from his nose, significantly reduced his coughing. (Albuterol is a form of adrenaline, and so Loki became very energetic after each session.)

An initial suspicion was whooping cough (or pertussis), which has been very bad here lately. Although Loki recently received a vaccine for this, kids have been known to get it nevertheless. So a blood sample will be cultured for this, and we'll know in a few days.

Loki also had a chest x-ray done, and his basic blood work came back "nearly perfect," making a problem with his kidney unlikely. He will likely have a test for a number of viruses.

Simultaneous with this, on the advice of a doctor, we recently tried reducing Loki's dosage of zantac, one of his two medicines for reflux, This experiment gave negative results: his reflux became more severe. Also, the site of his feeding tube became infected, and Loki was put on antibiotics. To top it off, the doctors today discovered an ear infection. All this things make each other more likely, and more severe.

Because Loki may have something contagious, he got his own room, both in the emergency room and in the intensive care nursery. That's a nice side benefit.

Mom is spending tonight with him. I'll go and relieve her of duty in the morning.

Good news and concerns

Loki has underwent some changes in his development, diet, and health. The news is mixed.

First, Loki took his first real steps just after two of his Dutch grandparents arrived (Opa F. and Oma H.). This has been a long time coming, but regardless is very exciting.

The good news is that Loki's tube feeding appears to have turned a corner. For about four months, we were feeding him Compleat Pediatric, a liquid food of real ingredients designed for g-tubes. A few weeks ago, on the advice of fellow feeding tube parents, Mom finally attempted to make a batch of homemade food. We had earlier received a book from another g-tube parent, but thus far we had been intimidated by the process. We are generally able to get this new food into Loki much faster, and he throws up much less. This means more sleep for us, and less cleaning of dirty laundry. Preparing the food is a lot of work, and bits of food get stuck in his tube's extension. We've borrowed a better immersion blender; that may do the trick.

We've actually had some particularly good eating sessions lately. This may be related to his improved tube feeding. Instead of an almost continuous feeding (shot every 10 to 15 minutes), or six or five tube "meals" (our pattern for a month or two), the new food allows us to have only three, larger feedings. Loki thus gets hungry between feedings, and eats better. We also continue to improve our understanding of what he likes to eat. He loves pesto by the spoonful, for example. So we mixed it with some other foods, and he eats it up reasonably well.

Unfortunately, over the past five days Loki's tolerance has decreased and vomiting has increased again, probably due to the lower dosage of Zantac we give him per G.I. doctor's order. The dosage has gone back up. Sadly, since the recent vomiting spells he has lost almost 1 kg (2.2 lbs).

Also, Friday night Loki was fussy and woke up with a fever of 38.8 C (101.8 F). At the end of the day it had gone up to 39.8 C (102.9 F). His mic-key button site is quite red. The doctor suspects an infection. Loki was started on antibiotics yesterday.

Loki recently had both his upper GI series (which we reported on previously) and swallow study. They were quick yet traumatic. Loki cried, screamed and kicked his arms and legs in the air, all to no avail. The barium was pushed in and no issues were detected. Mom writes, "I must say I continue to mentally challenge the process though. Most of the barium ended up on the Doctor's pants. Which doctor does not know how to manage the most common of all feeding tubes? Oh well."

The other challenging news is that, after a routine kidney examination, Loki was found to have elevated protein in his urine and elevated blood urea nitrogen (BUN) levels in his blood. Protein initially measured 1.2 but went down to 0.7 three days later. BUN is normally 10 to 15; Loki's was 17. Mom also wrote about this in February. High protein could imply either:

• A poorly functioning kidney caused by...
• wearing down of filtration units. Premature infants are born with less units than normal because the kidney is not optimally developed at birth. In addition, Loki only has one kidney, which has experienced significant trauma. 
• increased hydronephrosis due to another obstruction. His large urine output and bloodwork indicates that this is unlikely.
• nephrocalcinosis (calcium build up due to dehydration). 
• And / or too much protein in his diet.

With the help of the Internet, we determined that Loki's blenderized food was providing him with 39 g protein per day, but he only needs 14 g. So while a normal pair of kidneys can handle a high protein diet, we need to be careful with him. We have been researching the web, shopping for new foods, and talking to the nutritionist to develop a lot protein diet, both blenderized and spoon-fed. The doctor assumes the high protein diet is the most likely explanation. Thus, we are adjusting his diet for now and will do a urine test next month.

When high BUN is not accompanied by elevated creatinine, the most likely explanation is suboptimal urine concentration. Loki's kidney produces too much watery urine, therefore unable to appropriately remove electrolytes from his system. Despite several overflow diapers per day, Loki needs increased water intake to "keep up" with large urine production. Instead of the 25% extra we were giving him we have gone up to almost 50% extra water for a child his weight (1.5 liter of water per day in addition to his food).

The last bit of news is that Loki is coughing a lot at night. This is not uncommon in kids with mic-key buttons, but for whatever reason we have been lucky until now. Our best guess as to the cause is that lack of fluid intake by mouth may cause mucus build up in his esophagus, which starts to bother him when he lies down. As with his previous spell of night grunting, this is worse later, from 4 to 7 AM. We often get up, pat his chest rather hard, and comfort him, which helps him fall back asleep.

Despite health issues, Loki continues to be a happy, funny toddler who cracks himself up when he burps. He is a cuddle bum, loves his babies, cars, pens and bubbles. He is slowly talking more, expanding his spoken vocabulary including new words "luier" (diaper) and "wagon."

Loki walks! And other May & June photos & videos

We have a fairly long written Loki update almost ready. For now, photos and video. As always, those who get this by email will need to click the headline or this link to view the video.

The big news is that Loki is walking. This began just hours after Mom's mom and step-father (Oma and Opa) arrived. That's the first part of this video. The clips are then: playing with his water bottle while out to eat on a hot day with the Arbuckles, drawing (while a bit fussy), playing with our cat, playing with Dad, and discovering the couch sent by Nana and Papaw.



Loki delivers the couch. "Where do ya want me to put this thing?"

The couch from Nana and Papaw is nice!

Chillin' on the couch. His doll, Ole, next to him is wearing one of Loki's first outfits, which was way too large when he first wore it. But their shirts match!

I am quite impressed with how quickly Loki (and I suppose most babies) learn from observing behaviors such as talking on the phone:

Hair and bunnies:

Loki now rides in the stroller on his knees, resting his arms on the bar and bag in front. Sometimes he sleeps like this.

Let's see... the flute goes with the cheese:

Double tooth brushing:

With the Arbuckles:

Sharing a letter

I know a wonderful family. They have an amazing son who has cardiomyopathy, which means he is in heart failure. Their little guy, Simon, became very, very ill just a few months before Loki was born. Reading their blog has been a major inspiration and has shown me that parents, with an incredible amount of love for one another as well as their child, can practically manage any challenging situation. A few weeks ago we happened to bump into this family. Their handsome and charismatic little guy immediately charmed both Loki and myself with his huge, bright eyes. His mothers were wonderfully supportive of the difficulties we have faced with Loki's feedings and his tube. In addition to handing us some really useful supplies for Loki's mic-key button they gave me the advice that completely changed our lives; make home made blenderized food. I kid you not, since we started making our food at home Loki has barely vomited, he tolerates 60 cc's at once and he is eating more by mouth!! Needless to say, we are incredibly grateful!

I do not want to turn Loki's blog into a political sounding board. But I do want to share a letter that one of Simon's mother's wrote. It has deeply touched me. I have worked with many families living under incredibly difficult circumstances. I can attest to the fact that this family has a gift of making life beautiful, safe and happy for their son, despite his serious health issues. I hope for many more years of following their blog and I invite you to check it out as well: www.simonlev.blogspot.com

Below please find Jamie's letter:

Hello,

You don’t know me but I walk past your house 3-4 days a week on my break from work. Every time, I'm struck by your Yes on Prop 8 sticker. I'm guessing this may not be your intention, but every time I see your sticker, it feels like someone is standing in my face, yelling "I hate you and I hate your family”. I wanted to let you know what kind of an impact it has.

I thought the most constructive thing to do would be to take this opportunity to introduce myself. I'm guessing (maybe incorrectly) that you don't know any Gay, Lesbian, Bisexual or Transgender (LGBT) people and in particular LGBT parents. I have found that actually meeting or knowing about a real live person who is happy, healthy and well adjusted AND gay can sometimes change things for people who seem to feel the way your family does about people like me.

I can tell from your house that you have children. I am also a parent and the issue of Proposition 8 has taken on a whole new meaning for me since having my son, Simon.

I have known I was a lesbian since I was 17. When I came out to my family, they were distressed because they were very concerned for my safety. They knew that people who have been taught to be homophobic do and say terrible things to people like me. However, my entire family including my parents and grandparents, were also very clear that they loved me unconditionally and would support me in leading the happiest, healthiest, most fulfilling life I could live, even if I were gay. That meant more to me than probably anything in my life.

I met my wife, Laura, over 8 years ago through a mutual friend. We were good friends for some time before we fell in love. A year and a half later, when Laura asked me to marry her on the Ponte Neuf bridge in Paris with an antique diamond ring, I gleefully said yes. Our family and friends were thrilled and we had a large, beautiful wedding in Tilden Park, at the Brazil Building with over 120 family and friends.

Laura has known her whole life that she wanted to be a parent. I was a little more reserved about the idea, but after overcoming my fears that I would not be the kind of present, attentive parent I wanted to be, we moved forward with our process. A year and a half after we were married, Laura gave birth to our son, Simon.

Simon became gravely ill with a serious heart condition when he was almost four months old. He was in the ICU at Children’s Hospital Oakland for four months and nearly died numerous times. One of the things that sustained us as parents through that time was love. Love for each other, love for Simon and the love that so many other people showed us. Our doctors and nurses, friends of friends and relatives of friends prayed for us, sent us emails, gave us hugs, brought Simon toys and supported us as a family.

We were later shocked to learn that many of the people who were so kind to us in the hospital were evangelical Christians. They were able to treat us with kindness, love and compassion AND be Christian. They supported us as a family even though they may have had issues with us being gay, because they knew it was the truly good and kind thing to do. They did what Jesus would have done.

Which brings me to Proposition 8.

The only thing Proposition 8 and policies like it does is hurt families. It doesn't do anything to strengthen your family or those of any other straight people. It just hurts families like mine, especially families with children.

My being gay and being in a happy, healthy relationship doesn’t actually hurt other people. It won’t make your kids gay and it won’t make my kid gay. Anyone who has spent any amount of quality time with gay people knows this. Prop 8 isn’t going to make it any less likely that someone is gay or that gay people will create families together. Instead, it just makes us sad and feel scared that some day someone may hurt us or our families. And it makes the people that love us feel the same way. Fear and hurt are the opposite things that I would I hope loving Christian people like the ones that you seem to be, to bring to the world.

I am lucky enough to live in a state that has some policies that help me provide for and protect my family. I am the sole breadwinner right now because Simon is too medically fragile to be in day care so Laura stays home with him. In other states with policies that seek to deny LGBT people the basic privileges straight people have, I might have been denied the right to visit my own son in the hospital while he appeared to be dying or he might be denied health insurance through me. That is simply cruel.

Denying Gay, Lesbian, Bisexual and Transgender people the same privileges heterosexual people have doesn't actually help anyone. It just creates a culture in which people are fired, injured, killed and isolated for being gay. I know the goal of these types of policies is to somehow strengthen society but what they really do is divide us and hurt us. All of us. It hurts my parents when someone treats me badly for being gay and it will hurt my son when someone is cruel to his parents for being who they were born to be. It hurts me and I venture to say that in some ways, it also hurts you.

In the spirit of love, I want to reach out and invite you to learn about my family. We have a blog that we started at simonlev.blogspot.com that tells our story about living as a family with a critically ill child. You will probably laugh, you will probably cry and you may find that you come to see us as three of God's perfect creatures.

Presents for the littlest patients

Loki Sky's Holiday Gift Drive was featured in Community Connection, the neighborhood newsletter of Alta Bates Summit Medical Center. Click for a larger version. Congratulations, Kat!

Mother's day, medical tests, and what not...

It's been a while, but as you may remember, Sunday the 9th of May was Mother's Day, and boy did we celebrate! Dad had arranged some of my favorite breakfast items, and when Loki went down for his morning nap, we had an actual calm morning meal together. I received gifts and soaked in the hot tub while reading People magazine--yes indeed, my guilty pleasure. Because it was chilly and drizzling we had to cancel Dad's plan to go on a hike. Instead we went on the steam train and the carousel in Tilden Park in the hills above Berkeley. Loki was interested and intimidated by the new types of vestibular input. We had early dinner at Bacheeso's (my long-time favorite buffet) and, upon coming home, I got to read the rest of my People magazine while Dad put Loki to bed. Many, many thanks to Loki's wonderful father and my partner in crime!

Loki is obviously a toddler, according to his proud parents, that is. He is making slow but steady progress in his gross motor development, and last weekend something "just" clicked in the language department.

Loki stands without support for up to five seconds and walks quite comfortably for long periods of time while supported with only one hand. His gait is still wide and a tiny bit immature for his adjusted age, but we are quite impressed with this jump.

Loki has a language evaluation on June 11th. However, if his recent progress is solid, we may come home from that one with good news. I believe that I may have mentioned before that Loki's speech development shows some patterns similar to those of children with apraxia of speech. Until last weekend Loki made some sounds in babbling but (A) the range of sounds was very narrow for his adjusted age and (B) when asked to reproduce those same sounds he could often just imitated "maa" or "baaa." Despite his effort to imitate whatever we encouraged, he was unable to reproduce an otherwise familiar sound. In addition to this, he made more inconsistent errors typical for apraxia of speech. The few words he happily used two months ago, were replaced by no words at all. The speech therapist at his Monday morning prevention play group, offered through Alameda County Office of Education, agreed and confirmed that a formal speech evaluation was the next step.

However, last weekend something changed and Loki's verbalizations are now taking off quite impressively for his slow start. He consistently and spontaneously uses "la-la" for lamp, "fff" for fan, "tick-tock" when he sees a clock, "maa-maa" (maan=moon in Dutch), "mjaa" (ja=yes, with the "j" sounding like "y") and "bye bye." He uses "mama" a few times per day, but "daddy" usually only when encouraged. His sound repertoire during babbling has increased immensely, though. I am very proud to report he is able to use the very guttural Dutch "G." He is starting to imitate new sounds, mainly consonants, and even a few word-approximations such as "cracker," "ka" (for kaas=cheese), "nigh-nigh" (nighty night), "uh-uh" (uh-oh), "beh" (bell), "bah" (ball), "die" (pronounced dee, meaning this), "this," and "dant" (dank=thanks). Most of these are not quite consistent but I dare say they are an emerging occurrence.

Just as a side note, these changes did not just come about, we practice almost constantly in order to establish those brain patterns. We encourage him to use sounds in addition to signs with every communicational intent and we emphasize sounds we make day in day out. Basically, we have treated his symptoms as though they were early signs of apraxia of speech and regardless of the cause, the "treatment" seems to work.

Of course we also know the wonderful world of language signs. However, Loki tends to over-generalize signs and gets stuck on the few he knows, being unable to imitate new gestures. To everything that "moves" he assigned the same sign (vehicles, flag, bird, butterfly, tree (branches move in the wind), bike, etc.). "All done," "wash hands," "open/shut," "music," "clean up," and "book" have approximately same gesture. He signs for "more," "eat" (smacking his lips), and "please." In addition he signs "work" (or an approximation thereof), "star," and sporadically "red" and "green" when we look at the stoplight. Then, of course, there is "dog/elephant/any animal on four legs," "rain," "thank you," and "on/off."

Feeding and eating continue to be the most challenging aspect of raising an otherwise happy and healthy Loki. Also in this area he has made quite some progress. His oral motor skills are more refined and inching towards adequacy. After a few months of very little oral intake, and a month of little weight gain, we are cautiously optimistic again. Loki weighs 24 lbs which takes him to the 75th percentile for boys his adjusted age, who were born with extremely low birth weight. Today was a long time low, but generally Loki's interest in food is increasing; he tries many different items and swallows more food. Unfortunately, we are still not even close to half a meal by mouth per day (calorie or fluid wise) so Loki has undergone and will undergo some tests to determine why he is not making as much progress as expected. The therapists and doctor are confused as Loki does not present with the common oral aversions at this point in time.

Two weeks ago, he had a gastric emptying study to assess the speed with which Loki's digestive system moves food along (motility). We just got back the results: normal. It may sound odd, but I am somewhat disappointed. First of all, I would have loved an answer to our 14 month ongoing battle of getting food into the boy. In addition, this would have been the easiest of problems to address (medication). Also, Loki being squished inside a machine for over an hour would not have been "for nothing," and the upcoming upper gastrointestinal series and swallowing study could perhaps have been canceled or at least postponed. The latter two tests will take place back-to-back on May 28Th and are remarkably unpleasant. Regardless, Loki did incredibly well during the first study, after a first few minutes of panic. Baby Einstein on the DVD player helped quite a bit to distract him.

Elaborating a bit on the eating/feeding topic: Loki still vomits. Some days one little vomit, many days several big ones. However, and this is good news, we can push food in by syringe faster now. Our timer goes off every 15-20 minutes instead of every 10 minutes between 7 am and 1am. We're hoping that this "stretching" of the stomach positively impacts Loki's sense of hunger and ability to tolerate larger quantities by mouth.

Our sleep schedule is still challenging unfortunately. Because Loki does not tolerate the continues drip on the feeding pump, we feed him between those hours of 7am and 1am by hand. We never go to sleep together and never get up at the same time as we sleep in shifts. Usually dad takes the late night shift (by his choice for those who wonder), meaning he goes to bed around 1am. He puts in earplugs, I take out mine and I have night and morning shift. Fortunately Loki sleeps through the night most days, although he still is a very noisy sleeper. This means I have my ears open anywhere between 4-7 am to make sure he is okay, not aspirating on his vomit etc. etc. Generally the evening shifter has less yet uninterrupted sleep with sleep-in hours over the weekend. The night/morning shifter has more sleep, if going to bed before 9 pm, but is awake several times during the night and barely has alone, awake time at home. Needless to say that this is not an ideal nor desired situation.

Finally, I am going to brag a little bit here. Loki knows fourteen + body parts. He loves pointing at other people's body parts and then at his own, as if to say "you have ears; I have ears too." Loki retains almost every object, person, and activity when we name it (he demonstrates by looking, pointing, grabbing) after being introduced to it once or twice. In addition, he has a remarkably refined pencil grasp (sometimes he holds a pencil or crayon with an adult-like tripod grasp while making horizontal marks). My all-time favorite, one time, trick thus far was Loki sitting on his stool, saying "daddy," pointing at the door, signing "work" and then "open." Yes, when Daddy goes to or comes home from work, he comes through the door.

Enough for now dear blog readers! Thanks for making it this far!

Grandma Lanette

We are very sad to say Goodbye to Grandma Lanette today! We are very grateful, however, that Loki had a chance to meet her. He immediately was comfortable with her and shared his cuddles, as you can see in the picture below. Rest in peace grandma Lanette!