12/14/23 Meckel’s scan

 On our way to get a scan to see if we can find the source of her GI bleed! 

Praying for a safe scan that doesn’t require sedation

December 11, 2023

 Annelise turned 4 1/2 yesterday!

This week will be busy with therapies, specialist follow-ups, and a scan for Meckel’s diverticulum…. A possible culprit for the bleeding in Annelise’s intestines… 

We are hoping she will sleep through the scan, that way we can avoid her having to be sedated.  If the scan is positive… she will likely need surgery to fix a portion of her intestines, if it is negative… then we still don’t know where exactly the bleed is coming from, and have no plan to fix it then… so, we’ll just go where God leads us on this one❤️

Happy Thanksgiving!

 Much to be thankful for! 

The Lord’s gift of salvation, and our community of family and friends💖. The absolute biggest blessing these past 4ish years has been to watch this sweet kid grow from a teeny tiny 3lb baby to this 28lb sassy pants😍.  Years later and words still fail to adequately capture the level of gratitude we have for her Nebraska roots❤️🤩🥰🌽

11/20/23

 Happy to be home!   What a morning. Would obviously much prefer to not have to bring Annelise in to get poked. Each transfusion is a gift of health but also carries risks with each one.  We couldn’t be more thankful for our tough little cookie and for the relatively easy time she had this morning. Thanks to the blood donor, our wonderful nurse, who we realized has been Annelise’s nurse before about 3 years ago at the Synagis clinic when we got 4 weekly shots to protect her from RSV as a little baby☺️, and the skilled nurse who placed her IV.  I thank the Lord for friendly faces to help pass the time waiting for the transfusion to be done, and that Annelise seems to be tolerating it well!

Pink lips and a smiley face makes the day end a million times better than it started.  This is why we do the hard things.  She is always worth it🥰😍

11/14/23 It has been awhile!

 Life has been busy lately and I stopped writing updates, but I’m back at it!

Have you seen Annelise’s amazing Wonderfold wagon, or her long awaited medical stroller?  Two very useful tools for travel with our most precious girl and her many accessories!

Ya know when they aren’t very useful though? When we leave both at home! Whoops!🤪

We had a hematologist appointment today and didn’t even realize we didn’t have the stroller until we got there. We especially didn’t want to reschedule today since there have been some symptoms of low hemoglobin again… nothing extreme, but enough to make us wonder and really want to get the results of a CBC.

The good part…. Annelise LOVED being carried all over the place and was grinning from ear to ear and even laughing as we walked.  I’ve been looking for ways to incorporate more opportunities for exercise in our regular day, and I think I found a winner! This kid weighed in at 28 lbs today, and by the end of the appointment she felt much heavier than that 🤣

The not good part… Annelise still seems to be losing blood.  Her hematologist made a referral to get another blood transfusion and also a scan for Meckel’s Diverticulum.

She will likely need to be under sedation for the Meckel’s procedure as the scans can take about 90 minutes.  She has done well with anesthesia in the past, but just like the rest of the population… we try to avoid it whenever possible!

Even though finding Meckel’s would likely mean surgery… it is really the only hope we have for a way to take action against this mystery bleeding in Annelise’s GI system… otherwise we just keep giving her blood transfusions and alleviating the symptoms without knowing the problem.

This blood loss situation has been pretty stressful this past year.  I’d love for a real solution to be found. At the very same time I dread surgery.  Same feelings we’ve felt before.  Going through with all her previous surgeries has given us days like this one today, where we find new activities that bring Annelise real joy, and in turn, melt our parental hearts at the sight of her sweet smile🥰🥰🥰. God is so gracious and we know He is in the details now as He has been in the past and always will be. I don’t know how it will work out, but I know and trust the one who does🙏🥰

8/19/2023

 Been a long time!  I haven't had much time for updates recently, but I can document with some photos! :)

 

7/19/23

 

4/2 hospital stay

 4/2:

The ER was the least busy I've ever seen it this evening!  So I'm finally getting around to update that we're back :(

A couple weeks ago Annelise had what seemed like a regular cold.  Her respiratory symptoms had finally disappeared on Friday,, that's when a fever and elevated heart rate took their place😭

She was having some unusual episodes that the ER docs agree seems like seizures.  Unfortunately, she just had her first dose of Ativan, an anti seizure med that worked wonders for her in the early days of the NICU... but her heart rate continues to be elevated, and she just looks plain uncomfortable. 

I miss my girl's smile.  We'll be admitted to the PICU, where hopefully neurology will come up with some answers, either to treat seizures... or to keep looking elsewhere for the problem!

For the first time in a long while, her hemoglobin blood test results came back within the normal range!  

That is a huge success. A big yes to our prayers!

We were blessed with another great nurse, who was able to get iv access on the first try!  She was trained by nurse Monica who incredibly got it the last time!  Our nurse said she had great training, and also prayed right before she placed the IV 🥰 Hallelujah!

I'll keep you updated on her progress!

4/3 

Overnight Annelise's heart rate stayed elevated in the 160's. She is sleeping now in the 140's.  Her baseline is 110's awake and 80-90's when asleep. So something is up for sure.  She has her eeg hat on, and the plan is to do 24 hours of monitoring.  

Her neurologist was just in the process of ordering an ambulatory EEG, where we would go to her office, get the electrodes placed on Annelise's head, then return home with the machine to record brain activity, and go back the next day to have the electrodes taken off.  This was because she has gone so long without a noticeable seizure.... we were going to use this data to decide of she could start weaning from her seizure med!  So this sudden repetitive seizure activity has felt like a surprise punch in the gut!

We don't actually have the official word yet that seizure activity has been recorded.  The neurologist said we should know more by this evening. 

Kevin is still getting over what we think could be the same cold Annelise has.  Their symptoms don't quite match up, but the timing makes me think she gave it to him.  He is coughing, so he will stay home from the PICU until that's gone.  We don't need to share any germs that we can help!  He'll bring me supplies and coffee later today 🥰 and I'm keeping him updated as I talk to doctors.

Thank you so much for praying for us!

Here's a then and now photo from her last 24-hour EEG in Omaha!

Things are moving in the PICU!

Although if I had a choice I would have had all of these answers like yesterday.  The waiting is rough!

The original viral swab came back negative, but they decided to try again with a trach culture that came back with a positive for parainfluenza!  It feels good to know what it is that she is dealing with.  We also got the official word from neurology that she is having focal seizures.  To manage those, we will go up slightly on her current dose of Keppra, and then add a new anti seizure medication called vimpat.  She will likely go home on both of these meds if her body responds well to the combo and the seizures get under control.  We can follow up with Annelise's neurologist outpatient for any further changes that would be appropriate to make for her meds.

For now, she is finally sleeping and  tolerating her food...two great successes for getting health back. 🥰

2/27/2023 Scope day

 Annelise just went back for her scopes! We met the doctor in the hallway on her way. She is busy today. I told her she was being prayed for and to have a great day at work!☺️

She's out and back in her room!  Kevin and I spoke with the GI specialist who did the procedure, and when we got back to the room, Annelise was already tucked in.  She was wide eyed when we walked in, but is asleep now.  She looks comfy.

There were a few things that can improve.  Nothing really obviously bleeding to point to as an anemia culprit.  She has been on medication to improve her tummy and treat any ulcers for the past month since her January hospital admission and transfusion... So perhaps it was worse before, leading to the quick decline of hemoglobin.

Biopsies were taken, so we wait for them to come back and then make a plan that I think sounds like it will just be more of the same as we were doing. Perhaps with an added med to help her move food out of her stomach faster.  Then over time, we'll know if that was the best plan, or if we should do something else.  More waiting, trial and possibly error, but also just as much possibility of trial and win too!

The medicine that heals her stomach is one that can't be taken with food, so her tummy needs to be empty before she take it, and she needs it 4 times per day.  This has been the biggest challenge over this past month because Annelise digests so slowly, that giving her long pauses between meals has meant she doesn't meet her daily calorie goal. We just run out of time in the day.  We will talk to a dietician tomorrow though that we worked with when Annelise was a bald little baby.  I'm sure she will be able to brainstorm with us a good schedule for meds and her nutrition 🙏💡🧠

Thank you to all friends and family who are praying, or messaged, whether tangible or emotional help, we feel supported and cared for. That truly does make these days easier. 

We have our girl back with us.

And there were so many distractions between me starting this update and now.... That she is awake and smiling again!  I'm so excited to share these kinds of photos!  Lord the glory is yours, this girl is so tough and courageous!💖💖💖

2/27/23

 We have a time for Annelise's scopes in the books!  Right now it looks like they will have space for us around 2:30pm!

Since Annelise turned her days and nights around. She is sleeping comfortably now after staying up until 3:53am this morning! Kevin is the best and took the day off work and cared for her while I got a long nap this morning. 

Her sleeping photo looks just like all the other sleeping photos I've posted, so I'll give you another photo that makes me happy.  The inpatient pharmacist here has gone above and beyond to provide us with medicine bottle toppers that I just cannot get for us outpatient.  I haven't found a pharmacy that stocks them, our syringe supply company doesn't either, Amazon has only certain sizes for $28 each😳. The med supply websites sell them as boxes of 25 for around $150😳😳 It is a tiny piece of plastic, and the regular med bottle equivalent is given away for free at many pharmacies with your liquid med prescription.  

The pharmacist called to confirm her meds with me at our last admission in January, and when I explained our issue and asked if she had any ideas for me on where I could get the toppers, she said she would look into it, and then later. Came personally to Annelise's hospital room and gave us some brand new ones in various sizes!  

I met her again at rounds this time and told her how much they made med filling so much easier at home. And that I was just missing one size, and when I woke up from my nap today. This was on our counter!  😊

She didn't have to do any of that, but I think of her and her kindness daily whenever I have to get a med!  💖