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!  💖

2/26/2023

 There wasn't much on the to-do list today. But it still managed to be busy.  How does that always happen in the hospital?  Kevin and I traded off so I could go home this afternoon.  He got to help prepare for Annelise's colonoscopy tomorrow with a miralax clean out. A lot of diapers today, and when we weighed her tonight, she has lost 14 ounces since yesterday! That is a lot of 😳💩.

She will also have an upper GI study with the colonoscopy.  She will be sedated for the procedures. The CT scan results didn't show any serious inflammation, which is great news!  We will be excited to be done with these scopes tomorrow, and I hope that we will get some answers and a plan for healthy blood for Annelise! 

She spent a lot of time sleeping today, so now she is wide awake after midnight, vocalizing as she does sometimes when she is on her ventilator🤣. I love this silly kid!  She's hilarious🥰😍 The Lord gifted us one amazing daughter.

2/25/23

 Not much of anything to update, which is fine with me!  Excitement in the PICU is not what we are going for.

We were all able to nap today. Annelise got a second blood transfusion because the first one didn't bump her up quite enough to make her heart rate go back to it's baseline. She continues to be super happy, and for that we are sooooo thankful. 

Tomorrow will be another waiting day until the scope on Monday.  Not sure what time they will be scheduling her yet. 

Thank you for all the love!