The Weichelt triplets and their fight for survival
One month after a healthy birth and uneventful pregnancy, our boys were admitted to our local Pediatric Intensive Care Unit with a condition that stumped the medical commuity. In a desperate effort to spread awareness and find help to identify a cause, we created a Facebook page that documented the boys’ journey. They spent two months in the hospital and were undiagnosed for the majority of that time. Finally, a diagnosis of Parechovirus Type 3 was confirmed through CDC testing. No cure, no vaccine, and treatment is supportive only. The journey had just begun.
Scroll to the bottom to read the entries in order.
They are listed newest (top) to oldest (bottom).
August 3, 2016
We apologize for the spacing of our updates as we know some of the parents going through the same thing have been very anxious for us to get this posted, however it has been difficult to find time to write this. We also struggle with WHAT to say, and HOW to say it since it’s public. We struggle because we don’t want the boys to be labeled with something that they might overcome in the future. They surprise us every day. They have a long way to go but there is always hope that they will be the healthy boys that they were when they were born.
To start off, the now 22-month-old boys are all very different and they are all moving along at very different developmental speeds.
Mason has done quite well. By some miracle he is appearing to be unaffected by the virus and hospitalization. He started walking on Christmas Eve (a little over 12 months of age (adjusted age)) and hasn’t looked back. He shadows his sister closely, climbs on everything, and is developing a robust vocabulary. He is pushing the limits every day, which is what every toddler boy is supposed to do.
Dylan has delays across the board, along with stiffness in his core and upper body. He started walking with assistance and behind walker toys in the spring; however once he figured out crawling he lost interest in walking. Dylan also wears glasses to help with correction and focus in his left eye. We truly believe that the vision is a big factor to why he is behind. It takes him a while to focus, which might be the reason he lacks the confidence to walk independently. However he is making progress on movement, and slow progress on vocabulary. We can tell the inability to communicate causes him much frustration. He’s a giggler and an explorer but gets frustrated very easily, so we’re looking forward to getting him onto his feet and the vocabulary to start.
Logan was always our primary concern, especially with the left sided Cerebral Palsy and Cortical Vision Impairment diagnoses. However, he has recently been a milestone achiever. He started transitioning to a sitting position from his back all by himself about 3 weeks ago. The following week, with a smile on his face, he started taking steps from one person to another on his own. He gets a lot of practice walking with someone, by holding onto a finger or back and forth between two of us. We’re hopeful that he will be walking more by himself in the coming weeks. It was anticipated from early on that he would not crawl due to his left-sided cerebral palsy. This left-sided challenge has stuck with him and we struggle getting him to use that arm and hand. We are able to get minimal movement of his left arm with restraint therapy and stimulation. Thankfully, his left leg shows only minor signs of variation from his right, some of which was corrected with the use of a custom-fitted ankle brace. The other hurdle that Logan needs to overcome is using his vision. The vision impairment discourages him from independently moving and exploration.
Logan and Dylan also struggle with sensory processing. This does lead to a few eating and drinking challenges. There’s also sensitivity with loud noises, over stimulation, and other overexposure to their 5 senses.
We continue to work with them every day, seek professional guidance (the Marathon County therapists are amazing by the way), and advise others who are facing these challenges to try their best to stay positive.
Contrary to how this post sounds, we do try to stay positive with our situation; we just wanted to convey the truth about what our children are going through as a result of this virus. To bring perfectly healthy identical triplets into this world is a miracle and then by some unfair chance, they caught a virus that would change their lives forever; it’s not fair to them. Our advice to other parents who have had a child diagnosed with Parechovirus:
1) There are good days and there are bad days, and there is often a dark cloud that shadows even some of the brightest moments but you will get through it.
2) Every child needs their parents; these children will need you even more.
3) Trust your instincts. If you notice something, keep in contact with your medical team. They are here to help you. We love everyone on our medical team but also respect that they only see them for a short visit, so they lean to you to fill them in.
4) There is still very little research in the published literature about the Human Parechovirus, so you will likely drive yourself crazy researching and asking a million questions for which there are no answers. The infant brain grows very fast in the first 1-2 years, so there is a lot to be hopeful for.
5) You will feel remorse, sadness, fear, but you will also have joy, ambition, and pride. The littlest of milestones become mountains. When they do happen, stand at the summit holding them tight. Celebrate as a family all that he or she has overcome to get there.
For those parents that are looking for hope that were recently diagnosed with Parechovirus, just think of our Mason. He was just as sick as his brothers, on a ventilator for almost a week, oxygen often dropped when he would eat and he pulled through hitting his milestones just like every other toddler his age. Don’t give up! Every PT and OT appt is valuable and is the prime reason our Logan and Dylan are doing as well as they are. Those appointments give us the tools and knowledge we need. Simulation and loving attention is key!
To those Parechovirus families going through this, please feel free to continue to contact us with questions and concerns.
July 28, 2016
In the past couple of weeks we have gotten messages from three families from around the US whose infants have recently been diagnosed with this same terrible virus — Human Parechovirus Type 3. It is heartbreaking on many levels, but we do our best to offer advice and support as they go through such struggles. With no way to map the future that these children will see, families just like ours look to others for experience, advice, and encouragement.
So that we can continue to help those going through similar struggles, we will soon be posting some updates on the boys’ progress.
May 28, 2016
The boys stole the show as a highlight in UW-Milwaukee’s commencement video (Bryan’s graduation), shown on the Jumbtron and other screens to a packed Panther Arena last Sunday, May 22.
July 24, 2015
We get asked multiple times a day about the boys and how they’re doing. There’s never really been a short answer, but we usually try to keep it succinct and just say that “they’re doing OK and that they’re getting big”. Otherwise it’s kind of a long story that most people probably aren’t expecting. So, for those of you that got the short story, we apologize for not giving more details when we last saw you.
The good news is that they’re growing very well, all nearing 20 lbs and Stacey has still been able to keep up with all of their breast milk needs.
One of the boys is doing really well and seems to be virtually unaffected by the virus. The 2nd boy is in the middle, with some delays in development and has been behind in some typical milestones along the way (e.g. eye contact, sitting up, rolling over, interaction with others, interaction with toys, etc.).
And the 3rd boy is having some more significant troubles as a result of the virus. Just this week, we received some diagnoses that have confirmed our fears. On Monday he was diagnosed with left-sided cerebral palsy. And on Tuesday we had appointments with Ophthalmology at UW-Health in Madison where he was diagnosed with Cortical Vision Impairment (CVI).
We have been actively using therapy services through Marathon County’s Birth to Three program since they were discharged from the hospital in January and we are now also eligible for state programs that we’re still investigating. Because these county and state programs exist, Security Health Plan has a policy that states they do not cover any type of therapy (e.g. vision, physical, occupational, speech) for children with a developmental delay, regardless of the cause. So we are not able to seek care through our typical healthcare facilities like Marshfield Clinic or Ministry.
Wish we had better news to share. We’ll hopefully get some pictures posted next week, just waiting to get them back from the photographer. Have a great weekend.
April 3, 2015
March 18, 2015
Some great progress for Marshfield patients! The Parecho PCR test is now available with a 48-72 hour turnaround time. This is through a partnership with Kansas City. Previously, these labs were sent to the CDC and results were expected in 3-6 weeks.
Physicians and residents were already asked to consider Parecho encephalitis if they have a baby with unexplained apnea.
March 5, 2015
Article written about our family in the Hub City Times.
February 20, 2015
We never got a chance to get newborn pictures taken, but I think these will make up for it.
Here’s a sneak preview
February 20, 2015
Please help support the Parechovirus Research & Awareness Fund that we have established. After the experience of having our triplets hospitalized (an undiagnosed) for nearly 3 months, we have high hopes that research and awareness will prevent other children from experiencing the same trauma.
At present, there is no vaccine or treatment, and there may be a possibility that this virus is an explanation for many cases of Sudden Infant Death Syndrome (SIDS).
If you cannot make a donation, please help by Sharing this post.
February 13, 2015
We have had some questions about the boys’ progress, so we thought we would try to address a few of those questions here:
They are doing quite well, considering what they went through. Developmentally, they appear to be on track, with some needs for ongoing physical therapy. We’ve been reluctant to say much of anything about a disability, since we just don’t know yet.
Children infected with the Parechovirus Type 3 have seen varying degrees of effects, including significant cognitive and physical disability. “Only time will tell” is what we hear from neurologists and other parents. We hope that our story will inspire this new field of research so that others don’t experience the challenges that this virus brings.
There is no treatment or medication for Parechovirus, and there is no vaccine that could have prevented it. These are some of our motivators for establishing the Research & Awareness Fund.
February 5, 2015
RESEARCH & AWARENESS FUND
Many of you have asked about how you can help or where you can send donations. Some organizations have also asked about doing fundraisers. We are so thankful for your continued support and generosity. Since the boys’ birth, we have been humbled by your compassion and so many thoughts, prayers and kind words.
In an effort to take what our family has experienced over the past few months and turn it into something positive, we have been working to set up a unique fund for parechovirus research and awareness. Once the fund is established, we would ask that you consider donating to this cause.
If you have done any Google searching on your own, you’ve probably found that there is little known about the Human Parechovirus Type 3. Very little research has been published and very little detail is available for parents with newborns (or for parents who have already had a child with the diagnosis).
We feel that parechovirus is one of the explanations for Sudden Infant Death Syndrome (SIDS). Only future research will confirm.
Once the fund is established we will post more detailed information here.
Thank you again,
Bryan, Stacey, Lily, Dylan, Logan, and Mason
January 21, 2015
We’re happy to announce that the boys came home on Saturday. So far, they are doing quite well
January 14, 2015
Video from last week play date
January 8, 2015
The boys have a diagnosis – Human Parechovirus Type 3.
In short, it is a virus that infects the brain. From what we’ve gathered so far, it appears that the virus itself is not that uncommon; most people (~95%) are carriers, but never show symptoms. After the age of two, humans are immune to it. But in the perfect-storm-scenario – just the right time, at just the right age, with just the right exposure, newborns experience its wrath.
As you might have guessed, this is ultra-rare. No one has seen this in the Marshfield Clinic or Ministry systems. Quite possibly no one has seen this in the US in recent years, but we don’t know that for sure.
There’s been very little in the media about it. We found two news articles published in the past four years (one from UK and the other from France, nothing in the US). There also hasn’t been very much published in scientific/medical journals. The majority are from the Netherlands and the UK. We have not found any medical publications on parechovirus from the US.
There is no known vaccination (for prevention) and there is no known treatment.
The diagnosis has been corroborated by other physicians on the team.
The CDC has the only test available in the nation and reported a positive result earlier this week. A sample of spinal fluid, drawn mid-November, was sent there about three weeks ago.
They will now be testing the boys’ stool for the active virus. At this point, the findings wouldn’t change treatment or care from our understanding, but would at least confirm that they are no longer contagious and might also more closely define the length of time that the virus does remain active.
So, in a sense, this diagnosis is good news. We know they won’t have this experience again and we know the cause. The treatment plans for the boys haven’t changed – they will need to overcome their current hurdles. Once home, they will continue to need stimulation and attention, frequent appointments with specialists and therapists, and just a lot of love from mommy and daddy.
January 7, 2015
Bryan and I were able to get the boys together today which was the first time in quite a while because Dylan was in isolation. Finally a happy moment for our family.
January 5, 2015
Another playdate with Logan and Mason. They are getting so big and are having more awake time during the day. They were really watching each other and trying to grab at each other’s NG tube today.
January 4, 2015
Dylan’s swallow study did not happen on Friday since he was still stuffed up. They are planning on it being scheduled for tomorrow morning.
Mason’s stool has been clear since they’ve reintroduced breast milk into his feedings. Stacey still has no dairy or soy in her diet. The presence of dairy in her diet may have been linked to blood in Mason’s stool.
Mason did have a spell outside of feeding earlier today, so now he’s being watched closely.
Logan is doing great on feedings. He is now “on demand” and did pretty well for his first day. He had spells earlier in the week, so this is a good change.
I’m working on getting the boys’ medical care data (not just the standard health record), which has been an interesting challenge. At one point, I asked for the lab results and pending orders; not long after, I was given about 80 pages of paper. For those of you that know anything about IT/Electronic Health Records/Informatics/etc., you know that a stack of paper is almost completely useless (unless you’re going to enter it all into an electronic system on your own….which is pretty unlikely). Amazingly, the boys’ care has been recorded in at least 5 different systems (electronic and paper – Cattails, Centricity 1 and Centricity 2, PICU/Peds paper charts, NICU paper charts, spell/feeding logs) and this doesn’t include Marshfield Clinic’s systems, this is just Ministry. I’ve made the official request for their medical records; hopefully I will find out this week what’s included on the CD’s.
The care team shifted again this week with a new set of residents coming in. They are all great, as well as the nurses, but it’s been a challenge to have such a variety, with limited continuity (just my perception).
We should starting seeing results from some of the genetic testing coming back over the next couple of weeks. We met with a geneticist last week and have an understanding of what they’ve found so far through the Marshfield Clinic Research Foundation’s exome testing and what they’re looking at further.
Even though we know that the boys will be discharged with monitors and oxygen, and possibly NG tubes or G tubes, we are still very anxious to have them home and together.
January 2, 2015
Logan and Mason enjoying some time together. Logan pulled out his NG so he is also enjoying having it out until the next feeding.
January 1, 2015
Happy New Year! Here’s to a new and better year – 2015
Logan dropped in oxidation levels with almost every feeding on the 31st, even though he’s getting O2 while eating. This has been a concern for us and his care team over the past 48 hours.
Dylan’s swallow study should take place tomorrow (with the milk thickener). His cold is finally clearing up.
They started re-introducing breastmilk to Mason today at noon. He was pulled off of it after seeing blood in his stool last week. The reaction may indicate a dairy allergy, so Stacey has removed dairy and soy from her diet.
December 29, 2014
There aren’t too many major updates to talk about. Just a few things.
The boys’ O2 levels seem to be stable since they started giving them oxygen during bottle feeds.
Dylan has a bit of a rash on his chest from a new adhesive used for the leads. They’ve removed the leads, leaving his chest exposed to get some air. They are only using the pulse ox to monitor him now.
The boys are gaining weight, so that’s good!
Dylan – 8.774 lbs
Logan – 8.377 lbs
Mason – 7.982 lbs
December 27, 2014
We hope everyone had a wonderful Christmas. Even though the boys are still in the hospital during the holidays, we are lucky that they are so young and won’t likely remember missing out on the experience. Our heart breaks for the many hospitalized children that are old enough to understand what Christmas means and are not able to be home. On Christmas Eve, Stacey dressed the boys in their new Christmas PJs and Santa hats and read them a Christmas story… they also got a ton of pictures taken . On Christmas day, the boys awoke to a pile of presents from Santa! I think Lily was more excited about them than they were
The boys are doing pretty well. We are still waiting for a few tests to come back that might tell us more about the cause…but we were also told that we might not find the answer as they have tested for almost everything they possibly can, using 2014 medicine.
The boys are still having troubles with their eating. They were great eaters before this all happened, but now need to relearn the coordination of sucking, swallowing and breathing. Due to the spells that they are having during the feedings, they will be putting Logan and Mason on oxygen (just during the feeds). Also, most spells happen when they are sleepy, so if they appear too tired to eat, the boys get their feed through the NG tube. Unfortunately, the boys are all too familiar with the NG tube because they haven’t been finishing their bottles on their own (whatever they don’t finish needs to go through that tube).
Dylan on the other hand hasn’t been taking anything by mouth since the swallow study. He gets all of his feedings through the NG tube. This is because of the aspiration that appeared on the last swallow study. Monday he will likely have a swallow study using thickened milk. We are all hoping that it will go well. The reason they didn’t do the swallow study earlier is because Dylan had a cold, and they didn’t want that to influence the results.
Earlier in the week Mason had blood in his stool, so they did an x-ray and ultrasound on Christmas Eve. Nothing showed on the images and it has since cleared after being “nothing by mouth” (they call NPO) for a couple days. They tested the other two and Logan was fine but Dylan showed micro-levels of blood in the stool. They are still unsure if this was caused by a medication (that ended around the same time he went NPO) or possibly a milk allergy (from cow’s milk). If it is a true cow’s milk allergy, Stacey would need to remove all dairy and soy from her diet since this does go through breast milk. Not an easy task. Next time you’re shopping take a closer look at the ingredients…there are a LOT of products that contain dairy or soy. But she’s amazing (in so many ways) and certainly wants to do whatever is best for the boys.
They will look at doing an allergy test next week. This wouldn’t be the main issue that caused everything, just another small thing that is going on.
December 24, 2014
Merry Christmas from the boys!
December 23, 2014
Well, we got some snow here in central Wisconsin today, so at least we’ll have a white Christmas.
Here are some updates on the boys: Dylan and Logan are now getting an extra iron supplement.
Dylan’s swallow study is on hold until he gets over his cold.
Mason has blood in his stool. They think this might be linked to the supplement that they’re mixing with the breast milk (for extra calories). They’re switching it to a different one now.
Mason also had two scary spells during feedings today, dropping lower than he usually would.
And Logan had a spell, when not feeding, so they’re monitoring him a little more closely now.
We’re sure tomorrow will be better because they will get a visit from their big sister…and again on Christmas
December 21, 2014
Mason and Logan continue to have some spells periodically, when eating. Logan had another one this morning when Stacey was feeding him. From our understanding, these current spells are related to lack of coordination and it will only take time for them to relearn how to suck, swallow and breathe all at the same time.
Dylan is still only being fed through the NG tube while they wait for a thickening agent to arrive, which will then be mixed with the breast milk and fed through a bottle. Speech pathology will then evaluate with another swallow study early this week.
We are waiting on some test results for the boys (that seems to be a pretty common response when people ask how they’re doing…but that’s the reality). There is also a specialist from San Francisco who will be reviewing the MRI’s. The approval processes for payment have taken over 2 weeks to get him to review images and respond. It’s disappointing that the system and processes can take so long when three infants are waiting in PICU for organizations and physicians to work together to come up with a diagnosis and treatment plan. These images are sent electronically and can be viewed on an iPad, so it’s not for a lack of available technology to move files from point A to point B.
On a fun note…Lily came with us to visit the boys this morning; she did great and tried playing peek-a-boo with Logan. We will post some pictures later on today. This was only the second time she came up to the hospital to see the boys.
December 19, 2014
A picture from Wednesday when we brought all the boys together. The nurses had a great idea to put them in their own Christmas stocking
December 18, 2014
Wednesday was a busy day with swallow studies for Mason and Logan. They did well, but they did show that they have reflux. Dylan will likely be repeating the swallow study next week as he was the only one that showed aspiration when eating. The next swallow study will be done with thickened liquids and a different bottle.
Dylan also had a spell Tuesday night however hasn’t had one since. Logan has been doing well with no more spells, but Mason had two spells this afternoon during feedings.
The results from yesterday ruled out congenital myasthenia, which means they can discontinue the pyridostigmine medication.
The highlight of the week was on Wednesday when they brought all three boys together into Mason’s room. I was able to hold all three at once. They also put them together in one crib and we took some pictures (coming soon). It was great to have some smiles, laughs and happy moments. I know Bryan and I have said this before, but the staff here is truly amazing!
December 16, 2014
Here is a quick recap from today. Dylan had a small spell last night/early morning. They decided to do a swallow study to see if there is a chance that a type of reflux or aspiration might be causing the spells. So Dylan went at 11:30am and the other two go tomorrow. Dylan did show that he aspirated during his feedings, even after changing the flow of the nipple he was using. In this type of situation, they would give thickened liquids, however it is controversial on giving it to a newborn. We will know more of what this all means and the plan after the other two boys have their swallow study tomorrow.
Yesterday’s post commented about how the bone marrow results came back inconclusive, however today we found out that they were fine and in a good range.
Tomorrow Dylan will likely be getting his blood draw for the genetic testing. His hemoglobin is around 9 so he likely won’t need a transfusion. Logan’s hemoglobin is a little lower so he may need it. They also want to draw Logan for the genetic testing, so they will wait until Bryan’s blood is ready in case a transfusion is needed, which will likely be towards the end of the week.
On a lighter note, a couple nights ago, the nurses put the boys together for a little while. This makes us very happy, because with them being identical triplets we think that they miss each other and putting them together could only help. So we were excited to hear about that. We have been talking to the staff about doing this when we are there during the day (it’s a little more tricky because it’s busier) and hoping to do this in the next couple days. This is one small example of why we love the boys’ PICU nurses, because they treat our boys (and us) like family.
December 16, 2014
Dylan says Hi!
December 15, 2014
This morning Dylan had another small spell. They have since increased his medication.
The team ran a blood test on all the boys for hemoglobin. Mason showed that he needed a transfusion today and could not wait. The team only needs one baby for genetic testing, so they moved forward with Mason’s transfusion.
Since Bryan is a match, he was hoping to be the blood donor, but the processing time for the Blood Center of Wisconsin is several days to a week. He was able to connect with their center mid-morning and waited on the paperwork to be completed between them and the hospital through the afternoon. He was called at 4pm and asked to donate before 5:15 today (they’re closed tomorrow). He made it and was able to donate. When the other two boys need blood, they should be able to use Bryan’s (assuming that the testing comes back with a ‘thumbs up’). The blood goes from Marshfield to Milwaukee for testing before being ready for recipients.
The care team also took a blood draw for some bone marrow testing before giving Mason’s transfusion. The results for this came back inconclusive so far, but the team is reaching out to a specialist.
Bryan was also able to connect, through Global Genes: Allies in Rare Disease, with SERMO – a network of physicians for sharing cases. We have gotten a lot of great feedback from the many physicians on that network and we are very thankful for their input, interest, and support. Also, thank you to Nicole from Global Genes for helping to make the connections.
December 14, 2014
This picture of Logan is from Friday 12.12.14. They were all geared up for the EEG machines, which are now off.
He was wide awake, so couldn’t pass up a photo opportunity
December 14, 2014
This weekend was a little more nerve racking compared to the week we had prior. With the boys spells showing up again, we feared that the boys would be experiencing everything all over again.
The care team is leaning towards a type of genetic disorder related to energy production/exertion. They have stopped all feedings by mouth and the boys will be going back to receiving their milk through the NG tubes. The thought is that they exert too much energy when eating which may be causing the spells. So this is the first step. If this does not work they will adjust the new medication. They will increase slowly and with caution because one side effect of the medication is decreased heart rate. If they continue to have spells even after the medication has been adjusted, they would likely be put back on a ventilator.
We did find out that all of the metabolic tests came back negative. Early this week the boys will be getting blood drawn for the genetic testing. This had to wait until after Dec. 12th because of the blood transfusion they had a few weeks ago. The boys’ hemoglobin is pretty low and they actually need another blood transfusion, but they are trying to wait to give this until after the genetic blood draw. If they would get a blood transfusion now, we would have to wait another 3 weeks to run the genetic tests, which puts off finding our possible answer. It also takes another several weeks to get the genetics test results back.
December 13, 2014
On Thursday evening around 10 pm we got a call from the picu doc. She told us that Dylan had dropped his pulse-ox during his last feeding. All three had done so within 36 hours. She planned to stop all feedings and start IVs. The next morning (Friday) the neurologist was planning on meeting with a metabolic specialist from UW-Madison who was in Marshfield for the day.
They met around 10:30am on Friday. He was not totally convinced that it is a metabolic condition. The team is now leaning toward a specific genetic condition responsible for energy production. We are waiting on some testing to come back next week to decide which further testing make sense.
They started feeding from the bottle again too, around noon yesterday. They also started a new medication yesterday. Now we wait.
December 11, 2014
Our morning started out pretty well. Like most everyone, in central Wisconsin at least, we enjoyed the beautiful frosty views of trees and twigs dusted with a bit of winter’s chill. Ok, that’s enough fluffy stuff for one post .
Two days after meeting a fresh crew of docs, nurses, and other staff in the boys’ new temporary home out on the Peds floor, the little guys decided to shake things up again. Yesterday afternoon Logan had a couple of spells while eating (his oxidation levels dropped) and Mason had one early this morning. It was then that the docs made the call to move the boys from Peds back into the Peds ICU (PICU).
They are all back on EEG monitors. We are waiting on the results of the first 24 hours. So far, we haven’t been told that anything looks abnormal.
The move went well and they were all settled in this afternoon. Then we got a call from our daycare. Lily had a 103.2 fever. She shows no other symptoms, but naturally we’re concerned about almost everything now and we rushed to get her to the Clinic Peds to get checked out (Peds team, if you’re reading this, thank you again for seeing us on such short notice). Other than the fever, Lily is doing just fine. Hopefully she’s going to sleep her normal 12-13 hour night (we know we’re spoiled and she has set the bar pretty high, sleeping 12+ hours a night).
We typically don’t got through drive-thru’s or eat fast food, but tonight we were running late and needed to grab something Stacey and I. Anyways, we were the 3rd car waiting in line (on the right side) and the left line started to slim down to one car, then to none. I thought about backing up to move over to the other line, when the driver of the car in front of us must have thought the same thing. She started backing up and we laid on the horn (beeeeeeep…boom)…she backed right into us. Really!? In a drive-thru!? Thankfully, there was no damage. And she must have been really hungry because she pulled ahead to order her food before asking if everything was ok.
December 10, 2014
Santa came to visit the boys today. What a great surprise!
December 8, 2014
Over the weekend, the boys continued to improve and we are becoming less and less optimistic that the care team will come up with a diagnosis. Of course, as any parents would be, we’re nervous to take them home if there’s any potential at all that their conditions were triggered by something in our home environment.
The care team reached out to the Infectious Control team for feedback on mycotoxin testing. Their recommendations were that we test things in our house (at our expense) and if we find anything that comes back positive, we’ll talk about testing the boys for the same toxins.
Mycotoxins in general have not been widely researched, nor has the validity of the lab tests. Thus, few medical professionals pursue them as a viable option and more importantly, very few insurance companies will pay for such a test. Interestingly, every single medical diagnosis once started out as being virtually unknown to the medical community and it takes a movement (and significant, published, research findings) to move anything ‘new’ into practice.
As of this morning, Mason and Logan weren’t improving on their eating as well as they should and are still taking a good portion through their NG tubes. So, this is a little concerning for everyone. “Eating on their own” and “gaining weight” are the two milestones/criteria that they need to hit to be discharged from the hospital.
December 5, 2014
No major updates to speak of. We are waiting on some test results yet. And a couple of docs are reading more about possible mycotoxin exposures to infants.
All in all, the boys are doing pretty well, great improvements, but the docs want to keep them in PICU for closer monitoring. In the event that they would have the same things happen again, they would be able to catch it sooner.
They have all gained a little weight since being admitted, but have also gone up and down a bit which is expected after trauma.
Will post more as we know more. Thank you again.
December 2, 2014
Today the care team held a care conference for the boys. We were told that it was good to get everyone together to discuss what further testing needed to be done. We were happy to hear that they will not be recommending the muscle biopsy at this time. They will however be conducting further metabolic and some new genetic testing through blood tests, urine and spinal fluid, and they are also waiting on a number of tests to come back. They are also going to keep them on the seizure medications for the time-being and are discussing the possibility of monitoring them (briefly) on the EEG machines.
They also mentioned that there is a chance that they might not find anything at all, which is scary.
December 2, 2014
Here is a cute picture of Dylan from a couple days ago. He now has his NG tube out, however we thought this picture was extra cute with his mohawk.
December 1, 2014
December 1st has arrived… the boys’ due date (40 weeks) is today. It felt great to hold and feed Dylan today because with him doing so well with his feedings and gaining weight, it is as if nothing has happened. Mason is also doing great. He is still having a hard time finishing the whole bottle, as he gets tired out, however I am sure in the next day or two, he will be catching up. Logan had his first attempt at a bottle today and the speech therapist said he did great for his first attempt.
The boys look surprisingly well and have grown since being admitted.
Still no update on the diagnosis. The doctors have a care conference tomorrow to talk more about the boys plan and what further testing is needed. They may decide that 12 new tests are needed and they would like to do them all at once rather than wait for the first results to come back. However, the insurance companies aren’t usually in favor of this. They would rather do one, then wait. Then do the next one, if the previous was negative. The problem – it could drag out weeks or months.
One test that the team will be discussing more tomorrow at the care conference is the process of taking a muscle biopsy to further look for metabolic disorders. This procedure makes us a little nervous…and we’re not yet convinced that this is the right course of action. The procedure is quite a bit more invasive and they would be going under anesthesia in the Operating Room (OR). We just want to make sure this test is truly needed before exposing them to something so invasive after everything they have already been through.
A lot of people have talked with us about moving their care to another facility. Though we’ve considered the options and looked into some other hospitals, we feel like they would be starting from scratch at a new place and we still feel confident the Ministry/Marshfield Clinic team will find the cause. We have reached out to other organizations for their expertise, as have the docs leading the care team here.
We also have a new respect for the intensive care nursing staff and all members of the care team. It’s amazing how well trained, compassionate, and competent they are.
November 29, 2014
Today was a good day for the boys. Logan had his breathing tube taken out early this morning and we were able to hold him for the first time since he was admitted . Mommy spoiled him with lots of warm cuddle time.
Dylan is doing really well, eating on demand…more than what they expected. Mason is also eating well, however still getting tired out 2/3 through his bottle and has to get the rest through his NG tube.
Another highlight of the day was seeing Dylan with clean hair and a mohawk. The nurses’ diligence paid off and they were able to finally get the glue from the EEG out of his hair. He looks great.
Still waiting on labs to come back on the metabolic panels, they should start trickling in early this week. They are still leaning towards some type of metabolic disorder.
Yesterday they got a special visitor – this was the first time we took Lily up to see her brothers since they were admitted.
November 29, 2014
Lily’s first time visiting the boys in the hospital.
November 27, 2014
I hope everyone is having a great Thanksgiving. We’ve had better, but we do have a lot to be thankful for as well. Here are a few updates on the boys:
The docs have decided to keep them all in PICU for closer monitoring for the near future. Logan’s breathing tube will come out no earlier than Saturday.
The care team is leaning mostly towards metabolic disorders (e.g. mitochondrial), however the labs are still inconclusive. The fear is that if the boys do have some type of metabolic disorder, they will experience a similar reaction in the near future. They will have further labs to continue testing.
Thank you again to everyone for your continued prayers, thoughts, ideas and suggestions.
November 26, 2014
Thank you again to everyone for sharing your thoughts and ideas on possible causes. We wanted to post responses to some of your most common questions. So you’ll see those below.
Additionally, here are a few other updates on the boys. They are stopping Mason’s caffeine today and discussing steps to move him and Dylan to Peds. They would likely share a room. Friday would be the earliest that they would take out Logan’s breathing tube if all goes well and he will be staying in PICU for the near future.
Once moved into Peds, they would be on monitors for a full 5 days while the caffeine wears off, then at least another 5 days of monitoring.
All three boys are getting another MRI today. On a lighter note, two of the boys get a little bath this afternoon and the Child Life specialist came by to do some arts and crafts using their footprints.
Here are some answers/responses to various conditions that have been ruled out:
When they were admitted, their white blood cell counts were down and have since come up. The care team doesn’t yet have a good explanation for that yet, other than it got better. Sometimes it drops from stress, sometimes from an infection. Nothing else pointed towards them having an infection, however.
In an attempt to answer many of your questions about testing and exposures, here is a list of the more commonly asked-about illnesses and the care team’s findings:
Meningitis – negative
Lead poisoning – we had our water tested and it was fine. There was likely no exposure. Even if it was in the water it would take a pretty significant volume over a longer period of time. Their symptoms don’t fit with this either.
Polycythemia – this is a higher hemoglobin count, they don’t have this. Usually associated with a stroke, which their MRI’s don’t show
Mold – usually a lot of respiratory symptoms, the team can’t think of a mold that causes what they have. There are no blood tests to do for molds, and the doc thinks this is a low likelihood.
Enterovirus – negative
Salmonella – negative – would have diarrhea. This was talked about by the care team, but didn’t show in the blood and spinal fluid
Lactate (from spinal tap from Dylan) – normal
First round of metabolic panels (uric acid) – normal
Citrullinemia – pending as part of the metabolic panel
Formeldahyde – nothing lining up with their symptoms
RSV – negative
Strep – negative
Pertussis – negative
Botulism – negative so far (test 1 of 3), but were treated for it last week
Genetic testing – underway, but won’t see results for a few weeks to months
Home tests done last week and today:
Oxygen levels 19.6-20.8
Carbon Monoxide levels – 0
Radon exposure – testing the home now, but there is no way to test the blood for radon
Pesticides – The house was not treated for pests at any point in the past 12 months.
November 25, 2014
Our days have been flying by. Yesterday and today we met with so many different doctors and specialties. Ministry has a ton of wonderful resources for families.
Today was a much better day than yesterday. Dylan’s ventilation tube was removed and he did well with it. He didn’t even need oxygen. Mason is still doing great from his vent being removed yesterday and his oxygen was removed tonight. It might be a while before Logan is off the ventilator, due to his incident yesterday.
We received one of the botulism test results back, which was negative. It is not looking like it was botulism anymore. It sounds as though the doctors are leaning more towards a genetic or a type of metabolic disorder. The first metabolic tests look normal (uric acid) and the other metabolic labs will start coming back between now and next week. The genetic testing can take up to a couple of months.
We are thrilled that we have been able to hold Mason and Dylan and that they are all making improvements. We just hope the team can narrow down a cause. Fear of the unknown is always one of the hardest things to deal with, no exception here.
November 24, 2014
The otherwise gloomy morning started to take an upward turn as the rain slowly changed to huge flakes of snow. The care team had been planning to take out Mason’s breathing tube and they did so around 8am. He did great. We even were able to hold him for the first time since bringing him into the ER a week ago.
Then the morning took a different turn. Logan threw up, which clogged his breathing tube and naturally, he coughed, which displaced the tube and caused his numbers to drop. The nurses rushed to check on him, but knew they needed to take it out right away. They also called for help through the ‘code’ system and more than 20 people came rushing to his room from other areas of the hospital. Watching on, from outside the room, as nurses and doctors are doing chest compressions and breathing for him through a bag, is not something any parent would ever want to witness. We are so thankful to have such attentive and caring nurses watching over them 24 hours a day.
This afternoon, Logan has been doing well. They will reassess Dylan tomorrow morning and talk about removing his breathing tube either tomorrow or Wednesday. Not yet for Logan.
They also planned to take some additional spinal fluid to run another set of metabolic tests. Dylan’s procedure went well today (to get the fluid), but they weren’t able to get enough from Mason. And they did not attempt it on Logan.
The boys also had ultrasounds of their hearts done today. We have not heard the results from this, but they don’t suspect any irregularities, just another test to rule out suspicions.
The docs have a late afternoon phone call scheduled with a researcher who has recently published a paper on carbon monoxide exposure to infants. We are anxiously awaiting his thoughts and recommendations as well.
If anyone has any other unique ideas please do not hesitate to share those with us through the comments, or message us through the Page.
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November 23, 2014
Still no diagnosis, but some updates on the boys’ progress…
The boys did well throughout the night and they are starting to breathe on their own. There is a chance that Mason will get his ventilator out tomorrow, but Dylan and Logan will need to wait a little longer. Logan still has an EEG machine hooked up as they need to ensure he is not having any more seizures or irregular brain activity.
Yesterday, the Fire Department came to check our carbon monoxide levels in the home and it came back normal, just like any other house.
Currently, the docs are leaning towards some type of metabolic disorder, or exposure to some type of toxin (carbon monoxide, radon, etc). We are still waiting on the metabolic results to come back, which won’t be until sometime this week.
Tomorrow, Weiland Inspections will be checking our house for radon. We should have those results on Wednesday. It has been tested before and we do have a radon reduction system in place.
The understanding is that, all three boys were exposed to something that caused low oxygen levels to the brain (hypoxia), which later led to the seizures. This resulted in the current respiratory issues (causing them not able to breathe on their own), clonus and lethargy.
We are thrilled that they are gradually doing better however it is emotionally exhausting to not know what caused this and what our future will be from the effects of this.
November 22, 2014
The good news: The boys did well through the night. All are moving a little more and showing some improvements.
The not great news: the docs are not so sure it is botulism. Quite honestly they know a great deal of what the boys don’t have, but have yet to narrow down a cause. One doc stated earlier this week, “If its not botulism, I have no idea”.
Last night was the first night we were going to sleep at home this week, in order for us to spend some time with Lily. We got her put to bed a bit late, but we wanted to spend a little extra time with her, as you can imagine.
At roughly 9:30 pm, our new PICU doctor called us to let us know that she had been reviewing their labs and thought that they were in the upper end of the normal range for carbon monoxide. She recommended that we not sleep there if we have another option. We packed up Lily and spent the night at Stacey’s parents.
Though not all signs point to carbon monoxide, not all signs point to botulism either. They are still working diligently to figure out what might be the cause.
November 21, 2014
All three were put on ventilators Tuesday afternoon. A very large number of tests were conducted (everything from carbon monoxide to various bacteria exposures), all coming back negative, with others pending. The PICU docs were leaning towards one of three things – Botulism, Radon exposure, or some type of environmental toxin.
Dylan began having seizures, detected by the EEG system (and his MRI’s showed some brain damage from lack of oxygen (called an infarction (infarx)). Mason’s MRI also showed similar results. Logan’s MRI was scheduled to complete Thursday morning. The brain of a newborn is much more pliable than an adolescent or adult and has a better chance of healing itself and/or having other areas of the brain develop further after such an event.
They started seizure medication on all three. Adjusting dosages based on response over the next 24-48 hours. Because they are identical, they were treated with the same medications, sometimes before one or two were showing signs of needing it (e.g. seizure meds).
The other big event of Wednesday was that the docs made the decision to treat for botulism and Ministry Administration approved the order Tuesday afternoon. They had to wire the $150k before it could be released from California, as there is a very limited national supply.
The medication arrived in Marshfield in the morning. Pharmacy had to mix it and deliver it to PICU. Dylan got the first treatment and was closely monitored for any adverse reactions for 15 minutes before moving on and administering the drug to Mason and Logan. So far, no negative reactions and we are waiting to see progress.
We were told that this was the first time they’ve had identical triplets in PICU and the first time Ministry Pharmacy has had botulism medication on site. We’re told that it was pretty nerve racking for the pharmacists who mixed it and carried it up to PICU.
Dylan’s last seizure was at 8pm Thursday night. Mason has not had any more as of 11am today. Logan had been having them throughout the night and morning and they increased his meds to help.
All three will have a blood transfusion today. They are low on hemoglobin since they have had to run so many different tests.
They each got a sedation medication today between 8 and 10 am since they were being more active and they don’t want the boys to accidentally pull out their ventilator tubes. This is a good sign.
They have been getting diuretics, because they are retaining water. They are also getting potassium.
The test results for botulism will come back next week. The tricky part of treating, is that if they have it, the treatment may not have much of an effect. If the toxins are already bound to the receptors, it will have no effect on those, but will block remaining toxins that are still floating about. If those toxins are already set in (bound to receptors) it could take a month or more to show clinical improvement.
November 21, 2014
Late Saturday evening (November 15th), we noticed Dylan’s temperament and willingness to drink his breast milk had decreased. We watched him closely through Sunday and he didn’t improve. We took him into Peds on Monday morning and he was later admitted to the Pediatrics Intensive Care Unit (PICU) at Ministry Health Care.
Logan and Mason followed suit that very evening. Mason was acting as Dylan did while drinking his milk, so we brought them to the ER at 1:00am on Tuesday. The doctors in PICU and Peds were stumped by the boys’ condition, as were we. They showed no symptoms of an illness or infection (no fevers, runny nose, cough, temperature) other than lethargy and increased breathing apnea/spells (stopping breathing and losing color, which would happen periodically when feeding (and was normal), but once we got to the hospital they all started to have these same spells/apnea when not feeding).
Once admitted to the hospital, their condition deteriorated very quickly. This was noted on several occasions by the attending physician, that he had never seen 3 babies’ conditions change at such a rate.
November 21, 2014
We have never been overly public about sharing a whole lot about our lives, but after the past week’s events, we think it’s a good idea to keep those who are interested up to date and this seems like the easiest way to do so without fielding calls, emails and texts.
In March, we discovered that we would have an addition to the family due December 1st. We hadn’t yet planned on expanding, but it was still a great surprise. At our first ultrasound, the tech found three distinct heartbeats. Surprised, thrilled, scared, nervous, shocked, etc.
The odds of naturally conceiving identical triplets are not well defined. Different sources claim various odds ranging from 1:1,000,000 to 1:600,000,000.
We welcomed our sweet baby boys on October 17, 2014.