Megan's Journey

We (finally) received Megan's liver biopsy results today... and as I'm writing this I realize I probably should have posted an update earlier when we started down the liver biopsy rabbit hole, but time got away from me so instead here is both a short (first) and long (below) update about our sweet girl: Short update :   Megan's liver biopsy showed a benign lesion with some abnormalities that are consistent with Fontan-associated liver disease, but no evidence of malignancy was identified.  So this is great news and puts our biggest fear of a cancerous lesion to bed for now.  Megan's hepatologist said that, although there is no real name/label for these findings, abnormalities like this are not unexpected in patients with Fontan circulation and he is not concerned at this time.  They want to repeat the liver biopsy in June 2026 to assess for any changes.  I'm sure we will discuss all of this in more detail when she goes in for her regularly scheduled hepatol...

It's fitting that I am typing this on Thanksgiving, because we have much to be thankful for this year!  I'll provide more detail below, but for those like Mike who only like to read the first three sentences of any message I'll share quickly that Megan's visit went well, she was very brave, and all of her testing remained stable so we are cleared for another year!  All thanks and praise to God! *Big thumbs up from Megan after her echo* For those interested in hearing more detail, I'll add that now (Bye, Mike! 😜)   Megan and I left for Ann Arbor Sunday afternoon and spent the night in a hotel since her appointment was first thing Monday morning.  We had another special heart friend come join us for swimming in the pool - it's always great (for me and for Megan) to have the opportunity to connect with other families who are going through a similar experience. Monday morning we headed to Mott bright and early.  I know I said it before, but it's worth repeatin...

I wanted to give a quick update on Megan's GI visit at Mott yesterday.  Megan was very brave for her appointment and even for her lab draw.  And, as usual, we had to visit all our favorite hospital spots (pictures below) and even had the pleasure of popping in on some church friends who were there to have a baby!   Overall, it was a good visit.  I really liked the GI doctor we saw and felt he was able to do a good, thorough job of answering all my questions and addressing my concerns (and if you know me, then you probably know that my list of questions/concerns was not short!)  Without going into too much unnecessary detail, most of what was seen on Megan's imaging last month can either be attributed to the acute GI illness she had at the time or can be considered an expected finding in a patient with Fontan circulation.   There was, however, a new lesion noted in her liver that we are going to be keeping a close eye on.  The doctor explained...

Thanks to all our friends and family for your prayers and support during Megan’s recent hospitalization.  It was a bit of a whirlwind so now that we have been home for a while, I wanted to share some info about what happened and how you can keep Megan in your prayers going forward. Mike and I dropped the girls off to his parents in Bay City on Thursday evening 2/22.   Both girls were excited, happy, and feeling well; so, as planned Mike and I went down to Detroit Thursday night and got checked in for the MPA annual convention we were planning to attend Fri-Sun.   Friday morning, however, I got a call from Mary (my mother-in-law) saying that Megan hadn’t been feeling well, had a fever, and had been throwing up so we FaceTimed and it was clear she Megan miserable so I left Mike in Detroit and went back to Bay City to assess how she was doing. When I got there, poor Meg was still throwing up, shaking, whimpering, and white as a ghost.   But what really worried me wa...

Megan had her scheduled cardiology appointment on Monday (11/27).  In an effort to make these visits less anxiety provoking and more engaging for our whole family we have started making it our tradition to leave 1-2 days early and spend some time in Ann Arbor prior to the appointment doing something fun.  So we packed up and left Sunday morning and spent a fun day having brunch with one of our beloved former nannies, Annalisa, and then swimming in the hotel pool (which was extra fun for the girls given that it was snowing outside at the same time!) After a restless night's sleep in the hotel, we headed to Mott early in the morning for Megan's appointment.  I've mentioned this before, but these are loooong appointments full of lots of testing and waiting.  I was so proud of how Megan handled everything.  She was most nervous for her EKG since they stick 11 electrode stickers across her chest, and removing these is a little painful/uncomfortable.  She was so ...

Thank you to all the friends and family who have reached out to offer support and prayers this week.  I'm sorry that I haven't been able to respond to each of you with all the details on what happened with Megan (it's been a whirlwind), but I'll attempt to provide an update now.  (Please forgive any typos or grammatical errors - I won't have time to proofread.) We returned home from Florida on Saturday, and that evening Megan developed a little cough.  It didn't seem to be slowing her down, but as is my normal practice, I started checking periodic oxygen saturations on our home monitor just to make sure I didn't miss any signs that she was sicker than she appeared.  All was well and we had a fun, busy day on Sunday despite the persistent, worsening cough.  Sunday night she was very restless and didn't sleep well with lots of coughing (to the point of throwing up once), so early Monday morning right when we woke up I checked her oxygen saturation again.  ...

Today Megan had a planned cardiology checkup in Ann Arbor.  This visit was supposed to take place at the beginning of October but had to be rescheduled when the girls came down with COVID.   We brought big sister Natalie with us who has been asking to come for a while, and now the visitor policy allows for it again!  She was a nice support to Megan, and she also got to ask Megan's cardiologist all about what it's like to work in pediatric interventional cardiology since this is what Natalie (currently) wants to do when she grows up. Megan had an echo and an EKG done, and both looked great!  There are two areas of concern they have been keeping a close eye on (the tricuspid valve and the right pulmonary artery) and both areas were stable/unchanged from Megan's last echo which is great news!  Her heart function looks good, and her cardiologist was very happy with the results... so we don't have to go back for another cardiology follow-up for a full year!...

I'm sorry for not getting an update out sooner regarding Megan's appointments on Monday.  In addition to it being a hectic week, I often need a couple days to process new information about Meg, so I appreciate your patience!  (Poor Meg has also come down with some sort of GI virus the past 24 hours so I'm praying that passes quickly and uneventfully, although we are going to swing into the pediatrician tomorrow morning just to be sure she's in good shape before the weekend - you can never be too careful with these complex heart kiddos!) First, I must share that Megan did so, so well and was such a good and patient cooperator for all of her appointments.  It brought me to tears at how brave she was.  I'm a very proud mama!  It's amazing how far she has come and how tough she is. As per usual, I'll provide a very brief summary, followed by more detail for anyone who wants it.

 Hello all - Just a quick post to ask for prayers and positive thoughts heading into another big day for Megan next week.  We will go back to Mott on Monday 4/18 for a full day of appointments and testing: First we have cardiology, so Meg will get the regular treatment (echo, ekg, assessment) and we will meet with her cardiologist to discuss what happens next.  We are keeping an eye on her tricuspid valve that was a little iffy on her last echo, and they weren't sure if the function was stable or had slightly decreased.  So we pray that this valve looks great, that everything else checks out well, and that we can go a full year before her next cardiology follow up (and maybe even wean some more diuretic). Next we have a renal ultrasound and follow up with nephrology.  (This is for her duplex left collecting system). Our prayer is that the imaging will show a stable, healthy kidney and that no other action is needed here.  There has historically been some qu...

 As many are aware, we took Megan to Ann Arbor this past Friday (3/25) to have an MRI/CT done to assess the nature of her left-sided hearing loss. Before I provide an update regarding her testing, I want to take a minute to say a huge THANK YOU to everyone who reached out following our last post.   It was truly humbling how many people contacted us to offer advice, provide encouragement, and connect our family with individuals who could help share insight regarding this new challenge related to Megan’s hearing.   I was absolutely overwhelmed by the kindness of our extended community, and I cannot say thank you enough for showing our family your love and support yet again during a difficult time. So, with that said, I am happy to report that, overall, our visit to Ann Arbor went well.   Because of the length of both the scans and the fact that Megan needed to hold so still, they had to fully sedate (and intubate) her for the procedures.   I know she was anxio...

Last week we took a field trip back to Ann Arbor for some follow up with the ENT.  I think I shared previously that we learned over the summer that Megan has significant hearing loss on her left side.  This has now been confirmed by several additional evaluations, and the hearing loss is comparable with deafness on her left side (aka single sided deafness or SSD). Overall our visit went smoothly; Megan was a wonderful cooperator even though I know medical visits are very anxiety provoking for her.  I am so proud of how brave she is.  She was assessed (again) by an audiologist and then we met with the ENT.  After consultation with the ENT, our next step will be to schedule Megan for an MRI of the brain and ears to a) confirm what type of hearing loss she has so we know for sure what interventions may be available to her, and b) assess her good ear to make sure it's not at risk for hearing loss as well.  We also spent a fair amount of time talking to the ENT ...

We spent the day in Ann Arbor yesterday for Megan's first big cardiology follow up appointment (other than her post-surgical checkup) since her surgery this summer.  We also learned over the past couple of months that Megan has significant hearing loss in her left ear, so while we were already at Mott, we saw the ENT there to begin the process of working this up and investigating treatment options for her. Megan was excited to see her buddy Big Bird! I will start by saying that I couldn't be prouder of my brave little girl.  Megan did amazing, even though I could tell she was scared and grew tired as the day went on.  She held still and followed directions and was a great cooperator.  It was such a long day, but she did so well with everything proving yet again how tough she is!   Pickles and salami for lunch (some of her favorites) and a Peppa Pig balloon from the gift shop made her a happy girl! Brevity isn't my strong suit, so I'll provide a quick summar...