It's been a few weeks since we had anything as memorable as the 7 day bookend that we've just begun. It's been relatively drama free (well, at least to the point that it was blog or emergency room worthy), and I'm struck at how short and long the time feels as I realized that a month ago, we were sitting in a Primary Children's Hospital room, eager to see if we'd be able to take our little Sam home. But, as Sam's condition and story will not see resolution until (hopefully) they go to work on the fistula in his brain, we will have more bookend weeks like this. It started on Friday, with a check-up with Dr. Pete. It will end sitting in Dr. Brockmeyer's office, hearing about the second MRI results and what the next few months might look like for our little fighter. That's not to say that Sam hasn't kept us on our toes over the last 10 days (well, 10 days between Dr. Doom and Dr. Pete this last Friday). He's found new ways to terrify us...even using our comfort tools against us.
When you have an infant, you make countless lists in your head of silly things that you want to address with your pediatrician. Is he eating too much? Not enough? Sleeping too much? Not enough? Staring too long, not staring long enough, smiling too early, not smiling at all, barely smiling half smiles and do you count them? We join a fraternity when we become parents. It's Alpha Chi Worry. And we catalogue those worries into lists so that we can gain some insight and/or peace of mind when the inevitable trip to the doctor's office next occurs. For us, Sam's condition remains a source of constant questions - is he okay? How long will they wait? How is his heart? Is it holding up? Is it breaking down? In addition to those regular questions (well, for us...), Sam has given us new reasons to worry.
When we brought Sam home almost a month ago, his right hand had suffered trauma at the hands of the last IV. There was a large bump, and you'll remember us wringing our hands over the temperature differences of his two hands. While the temperature difference has become less noticeable, and the bump slowly disappeared, we now find ourselves getting to know every inch of little Sam. And Elisa noticed that Sam's right hand seemed a bit bigger than his left. Add it to the list. When you Google that, you either get unhelpful information that says if that happens, it's always a reversal in hands, or you read about horrible diseases and genetic problems that you wish you hadn't clicked on. We also had experienced a couple of car seat terrors - pulling the little man out and finding two purple feet staring back at us. One time, his feet felt violently hot. Another, very cold. So we couldn't just chalk it up to a temperature issue. That went on the list too. But it was the last item on the list that had us most worried.
Sometimes, our greatest tool and scariest knowledge is through our pulse oximeter. Every night, we hook that little red light to one of his feet and we watch...it's a constant reading of his oxygen saturations and pulse. And, for 3 weeks or so, we only noticed that we got an alarm on oxygen saturation when Sam decided to bear down while crying in his infinite attempts to resemble a grape. But on Tuesday night (last week), Sam's oximeter started showing tremendous drops in his saturation without the grape routine. He'd just fidget around and would go from 98% to 85% in a matter of 15 seconds. The beeping would begin and we'd sit, wondering if it would come back up. We also seemed to see that Sam's peak saturations weren't nearly what they usually saw. Sam liked to hang out in the 97-100 range, but we were getting readings in the 90-94 range. Sure, you might think we're just being overprotective, but it's the benefit and horror of having a tool like this. You seek truth in it - a sign that Sam is okay or a red flag that something's wrong. Sam decided to go through this routine for 3 days - enough fear that I called Dr. Pete in advance and he told us that as long as Sam recovered from the drops, we could make it to his Friday appointment (he was adamant about not going to PCMC when I inquired). So, we added that to this list - the big one. "Are the saturation changes a greater sign of heart failure?"
Friday came and we headed into see Dr. Pete, hopeful that he would give us information that fell into the "peace of mind" category. For the most part, I think we got it. But I also was struck by the feeling of reality - Sam's really sick. He has a serious condition that needs to be fixed before we can start talking about normal and healthy. Because he's not, and when you have a sick kid, you need to get used to scary phrases coming up in conversations - you know, things like "first signs of heart failure", "nothing to worry about at this point", and the like. But before we get to our list of three items, let's start with the fever that's catching the nation. What does Sam weigh this week? It's a sad fact that I spend my time leading up to an appointment doing calculations of 1 ounce gain per day and what we should expect. But when Sam had last seen a doctor (10 days before in Cardiology), he was a healthy 11 lb. 8 oz. By my calculations, he needed to be at 12 lb. 2 oz. to be on track at an ounce a day. So onto the scale he went and we watched the numbers rise. Sam, like the champ that he his, just sat and let the weight drop onto the scale. 10...11...12...finally landing at a healthy 12 lb. 1 oz. Yep, he's still putting on weight. Which is good, because he's starting to resemble a linebacker.
With that worry out of the way, we got down to brass tacks with Dr. Pete. We started with the hands. Dr. Pete did some comparisons, and gave us the scary (but somehow reassuring) "there's nothing to worry about at this point." He did tell us that there are some conditions that result in one half of the body being bigger than the other, but he also was kind enough to make a joke (well, Elisa rolled her eyes...it's nice to know she doesn't only save that for me!) about a teenage boy getting a larger and hairier right hand than left. He did tell us that when you have a sick child, your knowledge of their body becomes an impressively accurate accounting. Our eyes, because we're so focused, can literally distinguish millimeter differences. In the end, he told us that no person is perfectly symmetrical, and while he could see a slight difference in Sam's palm size, he didn't see a difference in Sam's fingers...indicating that it probably isn't a big deal. When I inquired about the possibility of damage and healing from the IV, he said it was possible...especially, since you can still clearly see the affected veins in his hand.
We moved onto the feet. I feared that this would be a sign of problems with Sam's heart. This was an easier one to overcome. Dr. Pete explained that while it can be a sign of poor perfusion (oxygen saturation), it's more likely to be due to stagnant blood. When a child or baby isn't moving their feet around to get the blood flowing, you will see the purple appear in the feet. We had specifically seen the phenomenon when Sam had been in the carseat for awhile. That seemed to be reasonable enough of an explanation, so we dove into the saturations and his problems of the past three days.
Dr. Pete wasn't overly concerned He said that it was very good to see that he had recovered within minutes when the saturation problems had occurred. He also helped us to see that Sam had seemingly returned to normal over the last day. In fact, Dr. Pete made me feel like my "it will be okay, honey!" approach that I usually take (to my detriment) might have been a bit more spot on. When he started having issues 3 days before, I noticed that he seemed to sound a bit hoarse. In the dead of night, I openly wondered if he had a bug. Dr. Pete believed that this was probably the case. He's surrounded by brothers that are constant germ magnets in 1st grade and Preschool. Bugs will hit Sam. Dr. Pete believed that the bug that he might have had probably just made saturation a little more difficult. Okay, whew. But through the rest of our conversation, we did get a slightly worrisome comment. We inquired, almost off the cuff, about a persistent cough that Sam had been dealing with since he had come home from PCMC. While I feared bad news with the feet question, I expected this one to just be a brush off. It wasn't. Dr. Pete let us know that a cough like this could be a clear sign of heart failure. He did calm us by saying that Sam was gaining weight, looked good, and was thriving. But I will tell you - when you hear that and then he coughs (even though you never really worried during the hundreds before), you feel your heart beating a little faster. Since we heard that, every cough feels scary. Everything about Sam's medical condition is scary. Yes, even a cough.
Still, we left Dr. Pete's with our list of questions answered. We went into our weekend, ready to clean up the Halloween decorations that Miles had begged us to put up for Thursday's festivities. It wasn't until tonight...a regular Sunday for most, when people are looking forward (or dreading) the work week ahead. For us, we look at Wednesday and Thursday with trepidation. We started this 7 day period with the old - good old Dr. Pete, answering all of our silly and worrisome questions. We will end it with the new. New results of the true culprit that has caused Sam so many problems in his young life. On Wednesday morning, we head back to PCMC for a 7:00am appointment. There, Sam will get another MRI. General anesthesia. Intubated. And magnetic images of his brain and this troublesome fistula. We'll worry about him being under anesthesia. We'll hate that he'll grunt because his throat will be agitated from being intubated and getting help breathing. But the real worry comes on Thursday, when we have a 9:00am appointment with Dr. Brockmeyer. Has the fistula grown? Are they as confident that they can fix it now than they were just a month before? And more importantly, what is the timeline for this end game? Half of me wants them to go fix it now. Make the cause of the nightmare go away. Let us watch Sam's breathing slow and become calm. Say goodbye to the oxygen cannula. Kick the viagra away from his regimen until he's a spry 50 year old needing "assistance". The other half of me realizes that we're potentially talking about brain surgery and the ridiculous implications associated. Outside of those two halves, is perhaps the greatest worry. What if they fix his brain and this fistula, but his heart remains broken?
Seven days. Bookends of our tremendous adventure with Samuel Ryan Pierce. In weeks' past, the bookend where reversed. We'd start with the potential bombs in the road and then be comforted by a calming Dr. Pete. This time, we felt our courage build up as we got a few more questions answered by such a wonderful doctor. I wonder if it was meant to be this way. Maybe this time, instead of getting bad news that we needed support on, we just need extra courage and confidence to battle our fears as we head into a really big test. Maybe the scariest thing this week will be the lead up to our meeting on Thursday, and not the results themselves.
Maybe. Hopefully. For now, we just head into another seven days. Two more appointments. Another major test. And probably a few more scares, directly from Sam himself. Just another "regular" week with little Sam. Anything less would somehow feel weird.
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