In case you aren’t a fan of Terra Talking on Facebook (and if you’re not, why aren’t you? click over there to the right – you can “like” it from right here on the blog!!!!) – then you may not know that we have spent the last day and a half in the big house with Kaylen, getting her rehydrated, giving her some IV pain meds, helping her airway do its job and keep her oxygen saturations up. She was a very very very sick little girl yesterday afternoon, and I was a very very very frustrated momma since I felt like the ER doc was missing the point that sitting there crossing our fingers and wishing on fallen stars that she would just sit up and tell us she was all better was highly unlikely to happen.
Finally after sitting there for 6 hours and literally dumping two bags of IV fluids into her with extra dextrose to try to bring up her low sugars, the doc realized it was a losing battle and admitted her for more IV fluids and pain meds. By that point she was already on the oxygen as well in order to try to keep her sats (oxygen saturation in the blood) up to an acceptable level. (Typically you should be around 99-100% oxygen saturation – and Kaylen usually is the few times I’ve checked her at home. Kendall’s orders from her pulmo are to stay above 94% or keep her symptom free – and Kaylen was sitting around 85-86, not waking up, and not responding to me moving her position, beating on her chest, or sitting her up.) From that point things continued to be not well – but we got up to the floor, and this doctor was MUCH more on top of things.
They ordered a chest x-ray because Kaylen’s symptoms were consistent with pneumonia, and she had decreased/rough sounds on her right side. The thought was that she was in early stage pneumonia, possibly induced by the intubation during surgery. All of that makes a lot of sense – but it didn’t make the nite any easier trying to deal with her horrible coughing spasms that were happening every few minutes. It was a very long, somewhat scary nite as at one point they bumped her up to 2L (two liters) of oxygen support and her sats were still in the lower-mid 90’s. Now I know that for some “medically compromised” kiddos, these numbers aren’t bad – but with my healthy little hurricane – I felt lost. I am not used to having to worry about her like this, and I didn’t know where/how/when to advocate and when to let her body just do its own fighting. Luckily our night nurse was very proactive and very helpful in keeping the fever under control, getting the tremors induced by spiking fevers to stop, and getting kaylen comfortable enough to at least “rest” in between coughing fits. They cranked up the fluids, stayed steady with IV ibuprofen, and we “woke up” this morning with a much happier and more engaged Kaylen.
Over the course of today we have been able to turn the oxygen down and she is actually right now on room air. Sats are dropping again as she is trying to nap, but nothing that is super worrisome and we can’t manage at home with a hit of O2 here and there as needed. She has trialed a couple hours off of IV fluids, and with a LOT of convincing we were able to get her to take her oral pain meds (a huge part of being able to go home – she has to be able to take all of her pain meds by mouth and have the pain stay controlled enough to eat and drink). A good friend brought up some “rescue fluids” – a McD’s coke for me and a strawberry banana smoothie from mcD’s for Kaylen – and boy did that help perk her up. She sat there and nursed that thing for a good hour – and I think that is when we started to see more of the Hurricane come back.
So she’s had a good day of making good forward strides – but still isn’t quite where I’d like to see her before I take her home. I would absolutely hate to have a repeat and have to bring her back. The team here is all really great, very supportive, very knowledgeable about “kids”, and we are in good hands. I wish they weren’t so cavalier about her oxygen levels because I think all we are making her do is burn up the IV hydration by trying to breathe faster in order to oxygenate herself better. And they are hesitant to pull any labs to pinpoint a direction because as the doctor says “they WILL be all messed up – she just had a pretty major surgery”. And we can’t do a flu swab (viral panel) because it will very likely cause bleeding in that very sore area, and it may or may not even yield useful info. All of this I understand and agree with from a medical point of view. But from my momma point of view, I just want her fixed. I want there to be some THING we can do to speed up the healing, or to relieve all of her discomfort. I want to not have to pin her down with my knee and force her jaws open to get her to take her meds and a few sips of water by mouth. I really want to not have to bring her back here in a couple days if this doesn’t get better. I want her to be able to sleep without busting into a major coughing spasm or have me have to beat on her chest to get her to wake up enough to take a breath/break up the mucus.
I just want to be home, with my whole family. I want to sleep for five straight days. I want the backs of my eyes to stop feeling like they are being stabbed by alien toothpicks.
I’m too tired to write coherently at the moment, and Kaylen is now satting in the low 80’s and having a hard time waking up. So i’m probably gonna have to go find someone’s shins to kick since there are (blessedly) no doogie’s here in this hospital.
peace out party people. Thank you all so much for the messages/emails/texts of love and prayers and support. For those who have asked – I think we are almost out of coke at home. I’ll have to double check with Ben! But if you are one of the ones who said you would be at the store and will be swinging by our house at some point – a 12 pack would hit the spot. And trust me when i say i will need the caffeine to survive the next week.
I’ll update you all when I know more!