There are so many people who have taken care of me in the last few years of my life. Friends and family definitely, but today I want to talk about a more specific group of people: Medical Professionals. And I mean like all of them!
This group of people has seen me at my absolute worst multiple times in my life. The very first day I met my new OBGYN after discovering I was pregnant for the first time, the first news she had to give me was that I had blighted ovum - that my pregnancy wasn't viable. That was not news that I expected or wanted. And she was some perfect combination of warm patient compassion and calm serious professional as she explained my care options moving forward.
And when that same pregnancy failed to result in a miscarriage on its own, I had to get a D&C. I remember there was this nurse who managed my care after the procedure. How I cried to her about how I wanted this baby that had never existed. And I remember feeling so awkward that I was spilling my feelings to this complete stranger and she listened and empathized as if it was the most natural thing in the world.
When I went to the hospital, finally in labor, I was lucky enough to get a nurse who was a former doula! She coached me so excellently through transition, and I remember feeling so lucky. In fact, all the labor and delivery nurses were fantastic! Over the course of the first day, it was so easy to make mental notes of their names and all the individual things I appreciated about them. They were so different from one another. I had planned to make thank you cards for all of them.
By day three, I realized I needed to starting writing names down as we had already had seven or eight different nurses taking care of us, and three different On-Call OBs each night. And after a C-section, we were going to be there for another four days, and there was a whole other fleet of nurses and pediatricians, not to mention all their assistants!
By the end, being overwhelmed with recovering form surgery, and learning to take care of a newborn baby I never did write any of those thank you cards.
Since then, we have had unfortunate cause to become familiar with the staff at Lucille Packard's Emergency Room, PICU, NICU, Radiology, and Imaging Diagnostic Departments! And at this point I don't know how many doctors, nurses, assistants, EEG techs, social workers, and orderlies, (not to mention all the people doing work behind the scenes that I never directly interacted with) that have been involved in Cyrus's care over the years. I certainly don't remember hardly any of their names, and honestly would not recognize most of their faces.
There was even one occasion, where the sister of a friend, greeted Cyrus by name at a social gathering. And I was taken aback, thinking we had never met this woman. But it turns out she had indeed met Cyrus! She was a nurse that had taken care of him when he was recovering from anesthesia after one of his MRIs! And she remembered him because she loved his name!
Needless to say, I am profoundly grateful for this group of people! They have coached me through so much from surviving miscarriages to changing diapers as quickly as possible to tricking infants into swallowing medicine they don't want. They have placed and flushed IVs and reset alarms when Cyrus had pulled out his O2 sensor more times than I can count. Even when I didn't have the best rapport with some of these nurses and doctors, I always appreciated them.
It is winter again, and Cyrus has been ill for the last week or so (but seizure free during this time!!). And despite not making it to any of his therapy sessions or to school, he's had a fairly eventful week. On Monday, we visited his neurologist to discuss his pharmacology treatment, which was followed by lab work to test his medication levels and his liver function because one of his medications is known for causing issues in this area. He was mostly fine this day - definitely congested, but awake, alert, complaining about teething - all the normal unhappy Cyrus bits.
But as the week progressed, he kept sleeping more and eating less. He has had reoccuring fevers in the late morning and afternoon (but still no seizures!), and a somewhat low body temperature (96 F) at night. On Thursday he had only eaten 3 oz of food (he normally has about 40 oz a day), and was boasting a fever of 102. Kyle took him to the pediatrician's where he learned Cyrus's lungs and ears were both clear - that Cyrus was most likely fighting off some kind of viral infection.
On Friday, he hadn't eaten anything. In fact, he wasn't waking up at all. Even when we tried to wake him up, he wouldn't do more than slit his eyes open, crumple his face in objection (crying with no sound), before falling right back to sleep!
Seeing as Cyrus struggles to drink thin liquids unless we give them to him with an oral syringe, he gets most of his fluids through his pureed food. And when he's not eating, I get worried about dehydration. So when I got home and discovered he hadn't wet a diaper all day, I pestered him - gave him four ounces of pedialyte (rehydration solution) 10 mLs at a time.
He showed his appreciation by throwing it all up on both of us fifteen minutes later. Liquid vomit is the worst. It just soaks through everything instantly and is just unpleasantly warm and still a bit slimy. We took a bath together, which he tried to sleep through.
While he slept I looked up dehydration - when to worry and what to do - that kind of thing. I learned that when someone is dehydrated you have to give them fluids slowly. If you do it too fast you just make them throw up!
Oops.
Well, no worries, we can go slow next time. Give ten mLs, then wait ten minutes before giving more. We gave him his 40 mLs of his usual meds over the course of thirty minutes. He wasn't a fan, but it got done.
Until it all came back up a few minutes later, followed by a lot of dry heaving. It being the Friday before Christmas it felt prudent to try to get him checked out before the holiday weekend. We tried to call the pediatrician's office again, which was still technically open, but they didn't answer and we hadn't made it to the "On-Call" schedule yet. So, we drove him over to the local urgent care to see if they thought we should take him into the ER, only to find they were closed due to holiday hours.
Luckily, I have friends with more than a bit of medical expertise who were able to offer advice.
We did end up going to the Emergency Room. And I must say, as far as hospital visits are concerned, this was one of our most pleasant! It probably helps to be familiar with the system and process, and that for once we were coming in with something that is far more typical, rather than rare beyond understanding. But it also helps to have an excellent care team.
Our nurse was warm and friendly - I imagine she is excellent at putting a nervous family at ease. As she was placing topical numbing gel and heating pads all over Cyrus's vein sites (such luxury!), she asked if he had ever had an IV before. I couldn't help but laugh at that question.
Yes, so many IVs, and once even an IO (when they can't place an IV as fast as they need to and so they just drill a hole into your bone), and never before with any numbing preparation. And boy did she know her way around a needle! She was quick and efficient with the tourniquet (the only part Cyrus actually complains about) and she had that IV placed so quickly and so cleanly even with his tiny butterfly veins. Really, every time she came to check up on us, she made a stressful evening far more pleasant.
I learned from him that children have less reserve water on hand in their bodies than adults so it is easier for them to get dehydrated. And that once they are dehydrated, it causes nausea and vomiting, so it becomes difficult to get them rehydrated without intervention (anti-nausea meds help or an IV does wonders!). He was very friendly and was probably the source of the only time I laughed the whole evening.
Dehydration is scary. Your child just becomes completely lethargic and listless - almost completely non responsive! But it is amazing how quickly they perk up once you get those fluids into them. We were only there for a total of five hours! That's our shortest hospital stay ever!
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| Awake and irritated!! |
This is probably not how I would have chosen to spend my first day of vacation, but it also went better than I honestly was anticipating at seven pm when we made the decision to go to the hospital.
At the end of the day, I'm writing this to say thank you to all the medical people who have watched out for us over the last three plus years that we've needed it constantly! I may not always say it when we're there because if we're there, I'm probably really tired and stressed, but I promise I'm gushing about you when we get home to anyone who will listen! And I'm truly grateful you have chosen the profession you have because you have literally helped save my son's life on more than one occasion. Thank you!
Happy Holidays everyone!!
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General Update:
We've had a few fun developments in the last few weeks.
First, Cyrus is cutting the center of his last two molars - the four pointy corners are all through!! The dentist said three weeks ago, that his last two teeth would probably be completely erupted within a month. So we might be done with teething in just a week or two! We're going to celebrate this day!!
His head control has gotten to be a lot more stable with far less wobbling. He's gotten to the point where I can prop his elbows up on his knees when he's sitting with crossed legs, and he won't immediately fall forward, and pretty much now never falls to the side.
Cyrus also received his first haircut courtesy of the San Mateo Zoo Barbershop who was giving away free haircuts to special needs kids a weekend or two ago. Pictures below show before, during, and after the cut. His hair hasn't been matted all week! This means he's happier with me for not having to work out the knots.
His seizure control has been all over the map. November was awesome if you will recall, but quickly turned into three status events in one week - the first week of December was only slightly better. But we went up on a med again, and the duration of his seizures has cut in half.
We had some lab work done on Monday to check Cyrus's medication levels, and to check out his liver function. We have found that he has macrocytosis (enlarged red blood cells), which is a potential side effect of one of his meds - depakote. He's luckily not anemic yet, but this is not ideal, so we're going to probably wean this med. In the meantime, we went up on Sabril again and we've not had a seizure since! Though he's also been sleeping a ridiculous amount this week, which always helps to reduce seizures, even with a few fevers, he's remained seizure free this week!
We're excited that he's doing well enough that we will be able to continue with our Christmas plans, even if we're leaving a day or two later. We still get to see all the grandparents, aunts, uncles, and cousins even if not all at the same time. We hope that you too, are spending some time with the ones you love!
