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.
My beautiful happy girl!
I totally hear you! I feel EXTREMELY guilty for having nurses for Addy. Although they are ONLY authorized to be here when we are both at work. Her g-tube is what qualifies her for these services. I spent months trying to get up enough nerve to let the nursing company know that one nurse was no longer allowed in my home. I had to trust my mommy instinct. One nurse just irritated Scott so we didn't have her back either. I can't imagine having a nurse here while we are home, however, Addy's care doesn't even compare to Bella's! Do what you need to do, it is YOUR home and Bella is part of your home and whoever needs to be there to help with her care needs to work smoothly in your home!
Oh Shelly, stop apologizing! I understand, because i see how exhausting Jax is, so i would never wish for you to have no nursing. It sucks!!! Bella is not the type of child i get upset at getting nursing when Jax doesnt. Its healthy children that get nursing over Jax that irks me. Bella is so beautiful, if we take our road trip to Florida, we are definitely stopping in Spring Texas!
First,I love your girl.You know I do.2 years of following her amazing journey.Your families,amazing journey with her.the videos are precious and that last picture... almost made me cry.she looks so grown up.
Shelly,I liked the whining.I think it is healthy and it is real and it is necessary.Part of the process of coping and moving on to the next day.
I will cling to hope as well,for all the things your mommies hurting heart yearns for.It won't be hard to hold onto that hope because this mommies heart knows that one day,your Bella,the brave and the strong will do all you wish for an more.Slow and steady ...
I really like reading your perspective. I am a nurse that did home care for vent dependent children. It was rewarding work that I enjoyed greatly...my past patients all hold a special place in my heart. I would say keep communication with your health care staff open and honest. Just as it is difficult to have a nurse in your home...it can be difficult to be a nurse in a patient's home. During my home health care years, I felt necessary...but at times I also felt unwelcome, awkward, and out of place. I was paid to be there, it was my job...However, I was not part of the family yet it was necessary I be with the family to care for the vent dependant child. If not handled carefully and professionally these set-ups can get messy very quickly. It is funny, this is not the first "frustrated" post about in home nursing care I have read on a special needs blog. However, I have yet to read a "appreciative" post even once in regards to nursing care. I wonder what both sides (families and nurses) could do to change that dynamic and make these situations less tense and more healthy and productive...
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