How these girls love each other! Bella’s favorite thing is to be off the vent and in the living room with the family. This week she could handle breathing on her own for about thirty minutes and then she had to get back on.
Sister rocking her to sleep and looking at the ads with the nurse. She is so funny! I’m have high hopes for this new nursing agency – still doing paperwork and interviews/orientations for the nurses coming with us to the new agency. I had a long talk with the Director of Nursing. How I hope things go well!
This is amazing – she has never sat up on a stool before – ever! She would panic and freak unless she could feel our arms holding her tightly, but look! It just all clicked! Not just sitting there, but reaching and coming back to the upright position. Wow, girl!
Using the stethoscope. I think I can do that! Thanks so much!
Cute video of Bella and her sister
Silly video of Bella
OK – that was all the happy stuff. Feel free to stop reading now.
Warning: whine ahead. You have been warned.
During Speech, we feed her some Stage 2 Corn and Rice, and then suctioned some of it out of her trach. Great! Combine that with the fact that we can’t get liquids thick enough to not aspirate on and her Budda belly and her toxic gas and I have made the royal decision to make our beautiful girl NPO for a month. I figure if it’s Celiac acting up that in one month’s time everything should have cleared out of her system and we’ll know. I’m hoping it helps her poor tummy. All of this gas and bloating isn’t normal. All that won’t help her aspirating, but it’ll help. Aspirating is dangerous. We’ll see.
I’m going crazy – slowly, but surely.
Two years ago we left the hospital, went for our first ambulance ride, and came home.
I was so excited, but I struggled. I struggled with having strangers in my home. Reality is I still struggle with strangers in my home. I was grateful to read this post. It’s wonderful therapy to know you’re not alone.
I feel so guilty. I am so grateful for our nurses (well, most of them). Truly. Some are like family. And Bella is beautiful. We adore her. But she is intense. She needs a lot of time and attention. Her care is extensive. My other children would have no life if the nurses were suddenly gone. But you see, on the inside of me is a very introverted people – hermit might even be a good word. Having someone in my home, there is no where to go to escape. There are days I spend a lot of time in my bathroom. I feel guilty because on the days I’m not too fond of the nurse, I don’t spend as much time with Bella. I have to force myself to interact with her because I also have to interact with the nurse. I have constantly supervised visits with my own child. I have to follow the nurse’s plan of care versus just doing what my mother’s intuition says (most of the time – I do make exceptions – but that means I have to be ready for a battle, so I pick my battles.) It’s been two years. Two very long years. Every time this discomfort hits, a small piece of my heart dies. And right at this second, my heart hurts.
On the other hand, what do I expect? These nurses come and work in my home for twelve hours straight. They aren’t robots. They need human interaction too. Really, I’m just struggling with a couple of nurses. But I feel trapped. How do you ask someone to please not come back because they stress you out? This is their job. This is how they pay their bills. And they are people. They have feelings. They have hearts too. How do I balance all of this?
Then there are people who have no nursing. And I feel guilty for complaining. (Sorry Lacey!)
Then there is hope. Hope that Bella will get better. Hope that she will be able to be a bigger part of the family – instead of just the sweetheart that we all adore, but who can only come into the living room for short periods of time each day. Hope that she will one day be able to tolerate stimulation so she can be with us for longer. Hope that she will be able to breathe without a machine or eat without a machine. Hope that we can be more normal – and not have nurses. But two years later and we are still here – breathing almost 24/7 through a machine with 155 hours of nursing a week.
What a hypocrite I am! We have a living, breathing (albeit through a machine), beautiful little girl. She is charming and beautiful. She has the cutest sense of humor. She needs help living and we are blessed with 155 hours of help a week. My personal problems just have to be dealt with. For she is Bella and we love her.
On Monday we headed down town for a GJ change, labs and sedated ABR.
Keeping her busy on the long drive down.
A PICC placement was having complications(so sorry for whoever that was), so we got put into a different IR room. Unfortunately, it was a sterile room, so I had to dress up in the bunny suit in order to accompany Bella into the room. I never get to stay for the procedure, but I do get to make sure she is situated correctly and all of her machines are plugged in, suction available, etc. Last time they changed her GJ she was so mad and upset she was foaming at the mouth and her circuit was full of junk. But this time she was happy at the end. Who knows? Maybe it was my fabulous attire!
We did a lot of waiting and looking at fish tanks.
Sweet girl – her hearing is “essentially normal!” Amazing! That is such an improvement. She had mild hearing loss, then sensitivity loss, and now this. Incredible – tubes are wonderful! She will continue to be regularly monitored – the audiologist wants every six months. We’ll see about that. But being on gent and lasix, she is at risk for drug induced hearing loss. So we monitor. But she told me that the loss would start in the high frequency first – so s, ph, th. That is what I’ll watch for.
And finally headed home.
She is so funny. She has learned to laugh around the vent, but it beeps. She gets so silly and crazy at times. I just love her!
She is headed back to sick – yellow/green plug this morning and fever. We’ll see. Hopefully it’s short lived.
Yeah for Gent – I love that stuff! Bella is back! That is what all her nurses keep telling me. Yes, the sweet, crazy monkey is back.
She has started eating a little again – wahoo! We have found that she is aspirating on liquids, but she can handle thick food. And she’s getting a chance to hang out with the fam for a little time. She’s isn’t off as long as we’d like, but it’s a step in the right direction!
Started off well enough. Our neighbors came over to play. Bella thought she was wonderful! We were all laughing – she never takes to people like this!
Therapy shots
Bella surprised us all during speech. Not even half way into it, she started signing “sleep, “sleep”, “sleep”, “sleep”, “sleep”, then “bed”, “bed”, “bed.” OK, Bella. We finished therapy right there and she took a nap. We didn’t even know she knew bed. She LOVES Signing Time, and she watches them all the time. I guess she is getting more out of them than I give her credit for!
Well, that nap should have been a clue for me that she was headed to sick. She was sick for several days. Her highest spike was at 103.9, and for someone’s whose baseline is 95 – that’s a pretty good temp. We ended up with every test imaginable – CBC, chem 7, lytes, x-rays, trach aspirate, strep, throat cultures, viral cultures. So far it looks viral. She has been miserable – and there is only one person in the world that she wants. That person is a little bit tired at the moment. The fevers are gone, but the crabbiness and the O2 is hanging around. I think we are headed to well again. Thank goodness.
And then Tuesday came. We still don’t know why or how, but her belly was distended and she was so uncomfortable. We did end up downtown at TCH for x-rays. The ER doc and I read her chest x-ray together. I reassured her that no, she didn’t have pneumonia – she just has atelectasis. She said OK, but was withholding her judgment until the radiologist read her film. Yeah, for us, the radiologist agreed with me (otherwise, it’s upstairs – ick!). Abdomen x-rays I’m not as familiar with, but even I could see that her bowels were distended and full of air. At least there was no perforations or obstructions. So we went home. She just has to pass all that gas. Poor thing.
While we were waiting, we finally caught her doing her “So Cute!” on film. We say, “so cute” and she puts her little hands under her face and grins. It’s so funny!
Home!
Friday we saw Cardiology. We used her ECHO from Easter and it looks about the same. We used her x-rays from the ER which are her baseline. We talked about her chronically low BP and the low hear rate when she is sleeping. They are really too low for someone her age, but with everything she is on, she is good. She was also rigged up with a 24 hour heart monitor. We always get alarms when we are hooked up at the hospital, but they don’t seem to last very long. So we don’t worry too much. We are just getting a good picture of her heart function. Her valves seem to be behaving – good. Her mitral valve is misshapen, it has a cleft, but it is behaving. I asked her whether or not that should be on my worry list (because I had crossed it off a while ago). She said that the longer it goes on behaving, the better (love the obvious!). Sometimes they will act up when the kids become teenagers. So we continue to monitor and hope that all stays happy in there. Her PH pressures were pretty good for her.
Silly girl is talking to her reflection! She entertained herself for a really long time doing this. One thing she doesn’t suffer from is a low self-esteem!
I was talking to our nurse after the appointment. Bella is doing so well that I want to cross things off my worry list. Drop a few specialists, you know? But really she is more like a Diabetic that has her insulin regimen perfectly figured out. The diabetic is still diabetic, just doing well on all the proper medications. That is where Bella is. I, for one, am grateful for all the proper medications!
She, of course, pulled all of her leads off later that day. We goggled how to put them back on! Thank goodness for the internet!
Saturday – we pushed it and she got 30 minutes off the vent. She loved the freedom.
These are from today – watching a new Signing Time (totally engrossed!) And trying to comb her hair after her bath – so smart!
