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!

2/24/2023 hospital

 11pm update:

Annelise is getting a blood transfusion as I type this.  She decided to go to sleep, so she will get a few hours until they take her down for the CT scan around 2am.  They could have done it sooner, but would have needed to give her another IV for the contrast that they use because it has to stay separate from the blood transfusion. I asked to put it off and wait for the blood to be finished so we could just use the one IV that we worked so hard for!  Worth the wait in my book!

Kevin came and brought me dinner and the iced coffee that I had forgotten to bring with me♥️ I don't know why they don't have an actual Starbucks in this hospital. This way Kevin got to save the day🥰💖 He'll come back tomorrow and be the awake one so I can nap then. 

8:30: we made it to the PICU!  Still no CT scan done. That will be next.  She is all smiles again.  My heart!♥️🥰♥️

6:15 update:

Wow! The team was able to come right away and got the IV!  Praise the Lord!

We met with the GI, and they are pretty sure she must be bleeding somewhere.  There's just too big a drop in hemoglobin for anything else to make sense.  So the hope is that this CT scan gives answers, but if not, then the sedated scope will probably be the next plan.

Annelise is unimpressed with the new inability to chew on her left fingers, since her left hand is where they got the IV access.  She found her right hand to be an acceptable second choice. 

Thank you so much for your prayers and wonderful messages. It really does make a difference to have so much support and love around us!🥰  I'll keep you posted!  

Update at 5:20:

The nurse tried her best and got enough blood for the tests they need to run, but didn't get the IV access they needed..... I declined to have another person try.  Hard choice because there's always a possibility that she could have gotten it! But I have to go with the odds and ask for the team that has the ultrasound machine.  Problem with that is that they are in high demand, so they will come "as soon as they can".... Meanwhile the plan is to do a CT scan with contrast through her gtube, and now we wait.  

The van is packed and we are ready to go to the ER....again😭

Annelise's elevated heart rate came back.  We tried to avoid the ER by getting a CBC blood test and hoping it would come back fine and normal.... But her hemoglobin number tanked to a 6.3.  10.2 is the bottom of normal, and it has been less than 3 weeks since hers was 10..... So now the gradual decline into anemia has become acute, so the need for more answers becomes more important, and so now tools like sedated scopes to go looking for possible sources of a GI bleed become more appropriate.  I hate all of it, but if none of these incredible assessment tools existed, then I would be praying for their invention.  Now we are just praying to get through it as easily and as comfortably as possible for Annelise.  

Will you please thank God with us for her smiles, and ask for easy pokes and comfort for her body so the smiles aren't interrupted for long♥️

2/14/23

 Happy Valentine's Day from Annelise!

2/10/22

I've missed some updates.  Annelise went to the ER again due to anemia symptoms.  Was admitted for one day and got another blood transfusion which made her perk right up.  Then caught a cold that she brought home. Kevin caught a cold too, but we are now finally on the mend, praise the Lord!