10 years!

 

It has been a WHILE since we posted a blog.  I thought that Lucy's 10th year was a great reason to dust off the blog and document some updates.

For one, how is she 10?  Some of the events of her traumatic diagnosis, NICU stay and early struggles are so fresh in my mind while others are a fuzzy memory.  Her first 10 years have been SO, SO hard as a parent but like most difficult things in life they have taught us so much about ourselves and those we surround ourselves with.

When Lucy was tiny, and really up until about 4 years ago our main focus areas for her were her health because she had so many repeat procedures, hospital stays and lingering sickness.  After her laryngeal cleft surgery, her recurrent pneumonia was a lot better but she continued to struggle with "CVS" episodes of throwing up, extreme restlessness, lethargy and severe anemia.  Up until the beginning of this year (2022), these episodes continued to plague her monthly.  However after several tests, medication attempts, a variety of doctors and the grace of God, those have stopped.  We are in a season of respite from major health concerns and it is so good for Lucy and for our family.  

When her health challenges were under control for the most part, we worried about her ability to keep up in school, to make friends with peers her age, to be independent.  We celebrated victories along the way but also wondered if she was behind in some way.  I continued to cling to the hope that Romans 12:12 offers, "Be joyful in hope, patient in affliction, faithful in prayer."

Now she is 10.  Her body is strong and capable.  She can play sports, she is keeping up in school,  has friends with common interests.  She is kind and empathetic.  She is creative and funny.  She is amazing.  She is a testament to God's providence in our lives, His healing power, His answers to prayers offered up by our family and friends.

Thanks for hanging with us and supporting us for 10 years!

Surgery Update

Lucy's cleft repair surgery was L-O-N-G (She was scheduled for later in the day, so we were the LAST people in the waiting room, like even the front desk people cleaned up and left) but according to the doc, it went well.  She received 6 stitches in the soft tissue of her throat somewhere that will eventually dissolve and hopefully lead to more successful swallowing for her going forward and less "junk" getting into her lungs.

Her tongue was quite swollen and her throat was quite sore after surgery, so she understandably wasn't too happy.  Since she has a history of respiratory challenges and it was quite late in the evening when she came out of recovery, they decided to send her to the ICU instead of a normal floor just in case she needed extra support.  However, true to form, our rockstar did awesome without oxygen all night and woke up hungry in the morning.  We were able to go home on Friday, which was nice. 

She isn't thrilled to be on a soft food diet, but we are making the best of it with lots of soft fruit, well cooked pasta and grits and are happy to be recovering at home as a family.  I expect a low-key holiday weekend in front of us.

Thank you for your continued prayers and support this week - we felt it!  Keep them coming for long-term success for this surgery!

Romans 12:12 - Be joyful in hope, patient in affliction, faithful in prayer.

Health Catch Up

Lucy has had a good summer, but she has definitely not been 100% from a health perspective.  She's had quite a few throwing up episodes, although not as severe as some in the past.  She had pneumonia again at the end of May and a few other respiratory infections.  I asked to have her blood levels retested based on her lack of energy and we found her hemoglobin was quite low again (7.8 - should be 10+), so she was severely anemic and needed a blood transfusion in the middle of August.

Her most urgent medical need right now is that she has a laryngeal cleft - basically where her vocal chords and larynx meet up and should close when she swallows, they don't close, so she slowly aspirates liquid into her lungs.  The theory is that all that gunk builds up in her lungs and causes ongoing infection, irritation and sickness.  This has been present since birth, but not an issue when originally diagnosed since she had a feeding tube.  In the midst of switching care providers, it was re-looked at and our current ENT doc thinks it definitely needs to be repaired.

So, today (Thursday) is surgery day.  The stitches each take 20 - 30 minutes and she'll likely need 5+ so it has the potential to be a few hours in surgery, with a 1 - 2 day recovery in the hospital.

We'll keep you posted on how it goes and how recovery and 2nd grade go.  I'm cautiously optimistic she'll be less sick this school year and we are on the path to permanent solutions to some of her complex medical.

Also, please know she really did enjoy summer!  She went to Art and Chemistry camp and NASA Exploration camp.  She made new friends, and went to the lake and Duluth and most exciting of all - Disney World!  She is amazing and strong, even when her body is fighting to stay healthy!

One Month Home

Joy :)

Yesterday marked one month home for Lucy.  It's been wonderful to have a "normal" schedule of work, school and weekends to relax.

Lucy has been feeling good since we've been home - lots of energy, eating well, no throwing up.  We are averaging about one doctor's appointment a week:
 - to check her swallowing functionality (questionable - there may be some aspiration into her lungs - like VERY small amounts, but still a potential factor)
 - To follow-up with GI (uneventful visit - going to try to drop one of her maintenance medications that was supposed to keep her from throwing up...hope it goes well!!)

In the next few weeks, we have hematology (to see why her red blood cells were so low and not reproducing fast enough), a chest CT scan, pulmonology and ENT.  There are also some patient advocacy conversations I'm having with the hospital based on how some things happened during Lucy's hospital stay...oh and of course a pile of bills to review and pay and prescriptions and nebulizers to pick up and administer.  We are down from 7 different medicines when we left the hospital to 3 though, so that's awesome!!

School has been going great - she's happy to be back and her class is happy to have her back full-time.  HUGE plug for the Mounds View School district - they have been so amazing to work with during all of Lucy's health issues.

We feel a little bit like we missed the Christmas season this year.  We bought and wrapped gifts (thanks mom for wrapping 90% of our gifts :)), sent the majority of our Christmas cards out and spent time with friends and family, but it honestly took most of our holiday break to unpack, finish laundry and mentally recover from the ordeal that is 2 months of sickness and 10 days in the hospital.

Thank You so much for the gifts, care packages, thoughts, prayers, phone calls, text messages, meals and love you sent us - it was felt and appreciated!

HOME!

Happy to be heading home!

I couldn't be more thrilled to report that we are HOME SWEET HOME tonight.  We were released around 2 pm this afternoon and were met with a house full of loving extended family members when we got home.  All 4 of us are so happy to be under one roof again after 10 days in the hospital.

Please continue to pray for Lucy's health as we have several new nebulizers for her to use at home and a few weeks of antibiotics in front of us and of course still aren't sure what causes these throwing up episodes.  I can't even tell you guys what a champ she is during hospital stays.  Of course, she has her moments of tears and impatience...but overall, she did such a good job.  Many times, nurses asked how old she was and were surprised / impressed that she is only 6.  Her vocabulary, wit and composure are well beyond her years.

I will continue to keep everyone updated over the next several weeks as we anticipate CT scans, swallow studies and a likely surgery to deal with the pouch and laryngeal cleft that were found during Lucy's broncoscopy.

For now, we will enjoy the last few days until Christmas and be joyful in the hope of full healing for Lucy. 

Romans 12:12:  Be joyful in hope, patient in affliction, faithful in prayer.

Day 9 in the Hospital

Smiling after receiving a gift basket.

So I am writing yet another post from the hospital.  I really can't believe it's been 9 days here.  Time has a way of escaping you when you're stuck in a tiny hospital room.  At least Jason and I can get out - Lucy hasn't left this room except via wheelchair a few times for procedures.

Today was a long day of waiting.  Lucy didn't throw up overnight and just a couple of times when she woke up this morning.  She had a little bit of an appetite today but not much.  She continues to get some IV fluids but it's been turned way down.  Unfortunately her IV has been bothering her lately, which usually means it's no good anymore and she is still getting anti-nausea and acid blockers through her IV...so we'll see how tonight / tomorrow goes from that perspective.

 - With some digging on my part, we were able to get the health records from Lucy's original discharge from the hospital in Denver, when she was 4 months old.  In addition, I provided info about a broncoscopy that she had done 5 years ago.  After reviewing the records, it was discovered that the existence of the "pouch" was known back then, but no further action was taken as it was evaluated to not be an issue.  In addition, pulmonology believes that Lucy may aspirate when she has these severe vomiting episodes and / or have a slight laryngeal cleft (that is an abnormal opening between the larynx and the esophagus through which food and liquid can pass through the larynx into the lungs).  After we are discharged, we will likely have a CT scan and possibly a Swallow Study to confirm / rule out these.  Overall - more information about possibilities, but no clear path forward.  We understand now that there is not a magic bullet that will solve everything.  We need to take steps to understand each component of her anatomy and determine it's impact on her overall health

 - We had a neurology consult to determine if they thought her vomiting was neurological in nature - they did not (after an 8 minute eval...so you know, not super thorough)

 - GI has NOT been back today to help us understand potential reasons for her frequent throwing up yesterday.  It's probably the most frustrating part of this hospitalization and the largest remaining mystery to Lucy's health with no answers.  I'm not sure what the path forward is for this right now.

So, hoping that Lucy has another great night and her IV is either still OK or deemed unnecessary.  Her blood pressure was down most of today but has been creeping up tonight so I am also hopeful that resolves overnight and isn't an indication that something else will go wrong.  Again, we are so ready to go home.  I think we have learned all we can from this hospitalization and are ready to resume the search for second opinions and manage this outpatient for awhile.

Still hopeful we'll be HOME FOR CHRISTMAS!  Thanks everyone for the support and the special cards and gifts that have been arriving for Lucy and our family - they are truly day brighteners in an otherwise dreary week.

Adding to our wall of brightness in Lucy's hospital room

Still here...

Lucy is frustrated by all the finger pokes and bandaids she has to endure!

At the end of yesterday, we were cautiously optimistic that we would be released today.  But, when the nurses were taking Lucy's 4 am vitals, I noticed she was super restless and moaning a little in her sleep - I had a feeling in the pit of my stomach that it was only a matter of time until she threw up.  Unfortunately, I was right.  Between 5:30 this morning and 5:30 this evening, she threw up 18 times!

The only good thing about this is that we were able to capture the FIRST throw up, which I proceeded to guard with my life so no one would flush it.  I requested that all doctors and nurses take a look at it and tell us WHY it looked like that.  I'll spare you the description because it's gross.  Bottom line - no one had ever seen throw up like that before.  SERIOUSLY!  So, we wait again to figure out what is causing such severe throwing up, how we can control it and why her stomach contents look like that.

And of course, because of the throwing up, she was given an MRI to check her shunt.  She also had chest and abdomen  X-rays, to check on her pneumonia and for a possible intestinal blockage.  We are awaiting results (so I 'm expecting them not to find anything or they would have told us by now).

Lucy hasn't been throwing up tonight so I'm hoping this continues and she feels a little better tomorrow.  We know from past experiences that she likely won't have an appetite for a day or two after she's done throwing up.

Today was the day I lost my patience.  Everything seemed harder than it needed to be (and trust me, a week in the hospital is hard enough!!) and nothing was coordinated - 2 blood draws, 2 trips to X-Ray, No Neurosurgery consult before sending us down for tests, etc. etc. etc.  I am tired of being here and watching Lucy suffer.  I try to be a well-educated parent and advocate for her, but when I have to explain to a doctor why I think X test is more appropriate than Y test, it makes me a little crazy.  I realize doctors are specialists in their areas and she has a lot of different specialists, but it's exhausting to always be mentally plugged into conversations and decisions made about Lucy's health and challenge residents and doctors when I think they might make a different decision if they had additional information that I only I can give them.  Basically, Jason and I know the full picture.  No one else does.  I wouldn't have it any other way though - I would do pretty much ANYTHING for this girl.  (Rant OVER!)

Still confident we will be HOME FOR CHRISTMAS!  Thanks all for your prayers and support.