Sunday, January 31, 2010

Cincinnati: Act II

After a Monday and Tuesday chock full of therapies and doctor's appointments, we headed up to the farm Tuesday night before a jam-packed day at Cincinnati Children's Hospital on Wednesday. We started out Wednesday morning with an anesthesia consultation, which was very thorough and informative and made us feel a lot better about Collin's procedures that will require him to be anesthetized.

We finished that appointment just in time to make it to our neurology appointment, which constituted nearly three hours of exhaustive questions and examination. We didn't come up with anything new from this visit (which we somewhat expected), although the doctor ordered an MRI. At this stage in Collin's brain development, an MRI will tell us much more about what is going on than it did back in June; not to mention the fact that CCH has much stronger MRI machines than we have here, which will hopefully yield even greater detail.

From neurology, we hustled straight to Human Genetics, where we did the standard incredibly extensive genetic counseling interview before seeing the doctor, who walked in, talked somewhat distractedly for a few minutes, then excused herself to look something up because just looking at Collin had triggered something in her mind. What she ended up suggesting is that Collin has a disorder called PEHO, which stands for Paroxysms (Seizures - the P can also stand for Progressive Encephalopathy), Edema (swelling - Collin's fat hands and feet were the tip-off here), Hypsarrhythmia (abnormal brainwave pattern that comes with Infantile Spasms), and Optic Atrophy. It is extremely rare; consequently, very little is known about it, other than that it is degenerative.

Here's where I stop and comment on the tricky business of attaching a name to Collin's challenges/condition/etc. I have felt for a while now that it would be so helpful mentally and emotionally to have a name to hold on to - to be able to say that this thing we're facing really is a thing. Even if it didn't help us know how to treat Collin, at least we would know what we are up against. But when the doctor presented those four letters to us on Wednesday, I felt myself almost physically recoil. I didn't want this word that might change the way people see Collin, the way they treat him, the way we might be told to view his future. Even though nothing was certain and it was only a hunch on the doctor's part, I felt extremely annoyed by this party-crashing identity that was trying to squeeze into our life and spoil what had come to be a level of semi-comfort with its awkward presence. The geneticist kept emphasizing that she could tell by looking at Collin that he has something that 'we should be able to figure out.' She meant this as a comfort, as a way of offering an assurance of answers; but I bristled at these words. 'You will never figure Collin out,' I wanted to tell her. 'He is more than any name you can conjure and more than any gene you can pinpoint.' But then I remembered that the whole reason we came to see her was for the kinds of answers she was promising and I resolved to work through these thoughts and feelings some other time. In order to figure out whether the PEHO hunch is legitimate, the plan was to reexamine Collin's EEGs, look for certain cues in his MRI, and get an ophthalmology exam. The information we get from these will direct us in whether or how to pursue this possibility.

The great thing about all of this time in Cincinnati is that it also means lots of time on the farm. We went home to a home cooked meal and a relaxing evening with my parents. Kyle had to leave for Louisville to work the rest of the week, which was hard, but my parents took off work to help me with Collin during the rest of his appointments.

Thursday was ophthalmology, which was good except for the fact that the doctor left to let Collin's eyes dilate and didn't come back for AN HOUR AND A HALF. I messed with pretty much every piece of expensive equipment in that room while we waited, stuck my head out into the hall repeatedly, and just generally got worked up. But when the doctor examined Collin and informed me that he saw NO signs of optic atrophy and that Collin's optic nerves (which another doctor thought were pale) looked 'darn good', I suddenly forgot my seething anger and found I didn't mind him so much. Even though he kept pushing my head out of the way with his light during the examination.

Friday was the MRI, during which Collin kicked all of our butts with awesomeness by doing a 45-minute MRI of the brain with no sedation. I bet you twelve dollars none of us could have done it. It's a little bit like sticking your head in a big pot and then asking a percussionist, an evil robot, and a construction worker to take turns on it from the outside. And you can't move a muscle or it will mess up the scan. At first, we though they were going to have to either reschedule it or use sedation because Collin was wiggling too much and they thought he was scared of the sounds. I knew better though, and I could see him in the machine smiling and laughing because he LOVE LOVE LOVES loud sounds. He just about pees his pants with happiness when the vacuum cleaner or garbage disposal are running. So, I asked them to let me try my thing and swaddled him up on his side with his pacifier wedged in his mouth and a ton of sheets and towels crammed in the head piece around his ears to make the noises less exciting. And - presto-bango - he thought it was naptime and promptly ignored everything else that was going on so he could concentrate on being awesome and going to sleep. That's my boy.

This weekend, Collin has thoroughly enjoyed being back home in Louisville. He's pretty sensitive to his surroundings for not being able to see hardly at all, and we could almost see him relaxing when we got him back in the house. He talked and wiggled and squealed for the next two days straight.

Tomorrow night, Collin and I will be going back to Cincinnati for his Aerodigestive evaluation. This will involve a CT scan of the chest (which will require anesthesia and a breathing tube), three different scopes, an overnight stay with an impedance probe placed in his stomach, a swallow study, and a pulmonary and surgery consult. Kyle will join us on Wednesday for the scopes and the overnight stay. It will be a long week, but we're hoping to have some answers by its end.

As always, we'll update when possible. Thanks again and again for your prayers, meals, encouragement, and your decision to be a part of this with us.

Sunday, January 24, 2010

NACD

So we just got home from our first escapade to Cincinnati. This trip was for an evaluation with the National Association for Child Development. With all of the craziness of the past weeks, I haven't had a chance to write about this really exciting possibility.

You can read the website for more details, but the short version is that NACD is a program that trains parents to help their children. Children undergo an evaluation in which their stage of development in various areas is identified and then a totally unique program is designed for that particular child. The program is based on data concerning the brain's plasticity and the belief that, given specific, intense, and frequent input, it can learn to accommodate for an injury. The input also organizes the brain, making it more efficient and improving its processing. I heard about it from my friend Tina, who has been participating for 6 months now, with great results. We were very lucky to get an evaluation this month, since the next date isn't until April and every day counts. They were actually full, but were generous enough to schedule an extra time slot for us.

So, Thursday evening, we met with Bob Doman, the founder of the program. He asked us lots of great questions, interacted with Collin, and discussed logistics and expectations. When he shared that his goals for Collin are running and jumping and playing, I had to kind of snort and bite my lip to keep from crying. It's impossible to explain what that kind of hope does for you. That, together with the fact that I will know exactly what to do for Collin and will be directly involved in every step of his development is enough to make me grin or blubber at any given moment. The evaluation lasted about an hour and a half, and we're hoping to have Collin's program early this week. We won't be able to do it full force for a while, since we'll be spending so much time in the hospital, but we sure as heck will do everything we can.

Then Saturday there was an NACD parent meeting for all of the families who belong to the Cincinnati "branch" of the organization. I can't tell you how good it was for us to sit in a room with other parents with struggles like ours who have found hope. I'm not saying it's a miracle that fixed all of everyone's problems, but we were connected by the fact that we all want more and better for our kids and are committed to doing whatever we can to make that happen, regardless of what doctors or ignorant people might think. We met some wonderful people who live close to us and we're going to start getting together for dinner periodically. We also met this fantastic kid named Scott who was diagnosed with Infantile Spasms at the same age Collin was. He was up walking around the room, smiling and making friends. I would have cried if I hadn't been so busy watching him. We left feeling so encouraged.

Even though I always feel a little wary when things seem good and I don't remember ever really feeling excited in the past year, I'm trying to just enjoy the reality that regardless of what has happened or might happen later, good things are happening right now.

Wednesday, January 20, 2010

Why Seizures Are Scary

I feel like I should start this out the same way I start so many of my calls to family members: "Everything's fine."

We haven't seen any seizures since yesterday morning. Collin has been sleeping well and has been smily and fun whenever he's awake. Surprisingly, he hasn't even been very groggy from the extra meds, which is great. In fact, I can hear him through the monitor right now, sucking his pacifier, and I can't believe he's still awake.

I am finally starting to let my shoulders move down to their normal place and have stopped holding my breath as much, but I still feel fairly on edge. A lot of people have asked me what the seizures look like, which always strikes me as an interesting question, even though it's totally understandable. I had never seen a seizure before Collin came along. Most people envision the grand mal seizures that they may have seen in a movie or on TV - violent shaking, etc. - but Collin's aren't remotely like that, though they're terrifying in a different way. Like I said a few days ago, I do have video I could post, but it just seems too personal for some reason I can't explain.

Collin's original seizures were spasms, which I've described plenty of times: short, quick movement of the arms and legs shooting out, his eyes looking surprised, getting upset afterward. But these seizures are like a slow-motion rendition of those. It usually starts when we think he is asleep, which is part of what makes it so scary. He's laying there, looking so peaceful and sweet, and then his eyes slowly open and look upward and his face freezes into a frown while his arms extend outward, stiff and with curled fingers, and his back arches. It's like some kind of horrible back dive frozen in midair. He remains suspended like this for 15 eternal seconds in which I'm totally powerless to help him and just rub his head and talk to him even though I have no assurance that he hears me. Then he starts to blink and gives a big snort and wiggles around like he's been wrapped up too tightly.

So, after seeing hundreds of those in a few days, I start to think that I see the beginning of them all the time. Every time he starts to fall asleep, every time he is relaxing in my lap. Every time Kyle walks in the room, I think he's going to tell me that Collin is having seizures again. I dream about them. It's a very real kind of haunting.

The only thing to do, unfortunately, is to ride it out. As more seizure-free days squeeze in between me and those sickening moments, I stop thinking about them as much and I'm able to read Collin's cues more accurately again. It's not that I come back to reality - it's that my reality changes back to something less frightening.

Tuesday, January 19, 2010

The Last Minute Boy

Collin's seizures really slowed down last night, though they never fully stopped, so Kyle and I decided that it wasn't worth it to brave the emergency room and tried to get a little sleep instead, taking turns checking on Collin throughout the night. When I got up with him at 5:30, he had started having them more frequently again. We called the neurologist and got permission to give Collin's morning meds a few hours early, along with an extra clonazepam with the understanding that if it didn't work within an hour, we needed to go to the hospital. After an hour, he was still having seizures every 5-10 minutes so we packed up and called the neurologist to let them know we were coming in.

For some reason, the nurse practitioner decided to call the neurologist who was coming on call (Dr. Awesome) to see if there were any other routes we could take. He gave us three options: 1) Be admitted to the hospital and try to start the ketogenic diet even though Collin is on continuous feeds right now; 2) Start a new drug (Dilantin) on top of the Keppra - this would require some blood work; 3) Increase his clonazepam - this was not really intended as a treatment, since they predicted it wouldn't work on its own; it was more to give us some parameters for doling out that med without having to call every time.

I hung up to discuss the options with Kyle and as we were making our decision, Collin fell asleep in Kyle's arms. Kyle was afraid to move, since Collin has the vast majority of his seizures in the early part of sleep, so he was stuck in the rocking chair, trying not to budge. After an hour, he was able to lay Collin down and hook him back up to his feeding pump without waking him up. Then he slept for over four hours and woke up without a seizure. Now he seems to be feeling much better and is smiling and interacting. We're going to continue with his current meds and pray that they start doing the job. Otherwise, we'll be heading into the hospital. How many times have I said that?

Also during all of this, we've been dealing with the fact that Collin hasn't had a bowel movement since Wednesday because of the barium he had to swallow for his x-ray study in the hospital. I'll spare you the details, but it has involved lots of calls to the pediatrician, glycerin suppositories, and close diaper examinations. You know, just to spice things up.

Monday, January 18, 2010

SeizureFest

We had a quiet, restful 2 days at home together this weekend. Collin was doing great - lots of open eye time, super happy. This morning, I was even practicing a little bit of bottle feeding with him. And then, out of nowhere, he launched into a seizure that scared the crap out of me. I don't know if it was because we're still not that far out from the hospital stay or if it was because things seemed so good, but it really shook me up.

The rest of the day since then has been a blur, just like all of the days when seizures come back: lots of calls to the neurologist, lots of time spent trying to keep Collin awake while we waited for medicine to work, lots of anxious hours watching to see if the seizures were gone, only to have one start just as we had started to relax. It is draining in so many ways and we had to regroup on several occasions to keep ourselves from spiraling downward.

I wish I could say that it's over now, but I'm actually taking my turn on seizure watch while Kyle gets a breath of fresh air and takes a shower (I just had my turn). We're down to our last option for home treatment and if it doesn't work, we'll be heading back to the hospital. I can't tell you how much I hope that doesn't happen. We need a break so badly.

Saturday, January 16, 2010

A Record

I'm sure some people think it's bizarre to take pictures of something like a hospital stay, but I have found that documenting all momentous parts of Collin's life - both difficult and enjoyable - helps me to keep a more balanced and honest outlook. I also think about showing them to him one day, to show him how far he's come.

This is our first full day in the hospital. None of us had slept all night, and Collin was starting to really feel the effects of the retching and lack of sleep and food. Here, he's trying to play with his beloved Fuzzy Bee book while we wait for an x-ray study of his g-tube.

I'm sure the nurses thought I was a nut for taking a picture of my child crying, but we hadn't seen it in so long and I didn't want Kyle to miss it. We're still thinking it was caused by a combination of extreme hunger and lack of seizure meds. (It wasn't until after this that he started having seizures and they loaded him up on drugs. I have video of the seizures, but that's not something any of us wants to see.)


Here is Kyle talking to Collin during his gastric emptying scan. Collin is bundled up in a rigid wrap to keep him still. The table he's laying on is taking pictures of radioactive materials moving through his digestive system. If you look, you can see the outline of his stomach on the computer screen behind Kyle. He got overheated and started having seizures about 30 minutes in to the 2 hour test.


Finally, Collin started to shut down. The extra seizure meds really threw him for a loop and the constant noise in our shared room stressed us all out. He stopped opening his eyes or making sounds.


Getting into our own room made all the difference, which makes me wish I had pushed harder for it earlier. This is just a few hours after we transfered. We were discharged about 24 hours after this.

Untitled from Annie Kratzsch on Vimeo.

Friday, January 15, 2010

Discharge Day

Holy moly, we're going home.

Discharge days are the longest, most painful of days. It starts with an early morning first mention of 'getting out of here'. And that's when you know that you're in for a week-long day that may or may not end with you actually going home. Each doctor you're seeing has to sign off on the idea (and that is quite a few people for Collin), which requires hunting them all down, getting their official approval, then getting orders written, prescriptions gathered, and the elusive paperwork completed. Nurses tend to find discharge very annoying for some reason, which makes the process even less enjoyable, since you can tell that they're annoyed that you're asking about discharge but you just can't stop asking.

Collin had a great night last night with fairly good sleep, no seizures, no apnea spells, and no retching. He woke up happy and interactive and after our first couple of doctor consults, we had pretty much determined that it was time to start heading toward home. We decided not to place the tube in Collin's intestine because the possible answers yielded wouldn't have been worth the risks, and since the continuous feeds are going so well, we opted to put off any surgery consults until we've all had some time to rest and think.

So, I spent the day trying to light a fire under people without ticking them off while simultaneously not getting my hopes up. And then, in true hospital fashion, the nurse walked in after hours of waiting and said that we could go get Collin's renal ultrasound (which was supposed to happen at 8:00 this morning) and leave. So Kyle is on his way and then we're out of here.

See you, suckers.

Thursday, January 14, 2010

The Floor

In the hospital, there's ICU, and then there's 'The Floor', which comprises all of the rooms for less critical patients. Today we got transferred to the Floor and it feels a little bit like snuggling down in a cushy armchair in front of the fire with a cup of something warm and delicious after a long walk in windy sleet. Maybe without shoes. Or any clothes. And maybe carrying something really heavy. And sharp. We have our own bathroom. We can close the door. We get to control the TV (*off*). There are places for both of us to sleep in the same room. I got to take a shower tonight. It's like a medically-monitored heaven.

But the best part about it is that as soon as we got in here and got settled, you could literally see Collin relaxing. All of his levels went to normal and he passed out for two hours - the longest he's slept since we got here. He's been more vocal and less withdrawn and we haven't seen any seizures or apnea episodes. Not to say that we're in the clear, but it certainly is good to see.

We're all already in bed with the lights out, happy to be together and hoping for a night of good rest.

Thanks to everyone for encouraging us daily and going to God on our behalf. We don't tell you often enough how it sustains us.

So Far

Collin had a seizure after the last post and I could see the day spiraling downwards before my eyes, but that was the last one I've seen and he's been sleeping peacefully for an hour and a half, which is fantastic.

I have spoken with every doctor already today. First, Collin's pediatrician stopped by our room and we had a nice talk in which he encouraged Kyle and I to stay in tune with our parental instincts through all of this and to remember that our knowledge and observations of Collin are superior to anyone else's. It was just what I needed to hear. He also gave me some good info about what we will need to do to get our second opinion in Cincinnati.

The nutritionist came in to talk to us about the ketogenic diet. They're still advising that we get Collin's digestive issues ironed out before we start it, but it seems like it will be very doable once we reach that point and we're all very hopeful that it will reduce or even eliminate Collin's need for anticonvulsants.

The attending PICU doctor touched base this morning about some tests we have ordered by Collin's geneticist - a kidney ultrasound and a slew of blood work. They have arranged for us to get all of that taken care of while we're here.

The surgeon has been in twice today - something of a miracle - to discuss our options for the Nissen issue. Since Collin is doing well with his continuous feeds, we're going to be allowed out of the ICU and into a private room, which almost got a little happy dance out of me when I found out. We're just waiting for it to be cleaned right now. We also still have the option of surgery, and a third option is to place a tube through Collin's g-tube hole and into his upper intestines to bypass his stomach and eliminate reflux. This would actually be more of a diagnostic tool than a long term solution because it would tell us whether Collin's oxygen-drop episodes are due to reflux or something else (airway issues, messages from his brain, etc.). We're still feeling that a second opinion is important, but are not certain about the order in which we'll do things.

Collin's neurologist was on call today, so we got to have a good talk with him about Collin's seizures and borderline-apnea spells. He actually reduced Collin's Keppra even though he has been having more seizures, hoping that it will help with the sedation and maybe even the apnea episodes. He seemed relatively concerned about these episodes and agreed with the surgeon that we might need to go home with some sort of monitor. He also supported the idea of a sleep study to get a more detailed picture of Collin's sleep-related issues.

So, it's only midafternoon and I'm already feeling saturated with information. Which is certainly a good (and rare) problem in the hospital, when you typically spend 95% of your time waiting around and doing nothing. Now we just have to sort through it all, weed out preferences of doctors and nurses, apply our own expertise, and make our executive decisions on Collin's behalf.

Little Happies = Good Medicine

I was able to sleep some last night, which was great, and when I came in this morning, I found Collin wiggling and smiling in his bed. This was like a big shot of good medicine, since he hasn't really smiled since we've been here. He's tolerating his continuous feeds well so far and it seems like having the food in his system feels so good that he just wants to play. Hopefully, he'll get over the novelty soon and get some sleep, since that's going to be another huge piece of keeping these seizures at bay.

So, just a little something to counteract the effects of last night's post.

Wednesday, January 13, 2010

Another Long Day

We were able to do the gastric emptying scan today and it apparently showed 3 minor instances of reflux. Unfortunately, we are not exactly sure what that means. Collin does have a herniated Nissen we discovered, so reflux could mean milk going up into the herniated part of the stomach or it could mean actually getting up past the Nissen into the esophagus. Big difference. I will be chasing down a surgeon (or maybe a radiologist or maybe both) tomorrow to find out more helpful details. At any rate, our options as described by the surgeon are: A) Do surgery to fix whatever is wrong with the Nissen; and B) Start a trial of low flow feedings, hoping that these 2 days of no food have allowed his stomach to heal somewhat. I'm not sure what the long-term advantage of option B is, but we actually chose that one, more as a way to buy time than anything else. Our hope is that Collin will tolerate this method well, which will enable us to get out of the hospital so we can hightail it to Cincinnati to get a second opinion. It just doesn't seem like a viable option to send Collin into surgery to fix a problem we don't even fully understand.

During his gastric emptying scan, Collin started having seizures again and we have been unable to stop them so far. When the neurologist stopped by this afternoon, he confirmed my suspicion that the incredible stress to Collin's body from the retching, the not eating, not sleeping, and being in a strange and stressful environment have most likely triggered these new seizures, which have proved to be so hard to control. Even with a dose of Ativan, he still has not been able to fall asleep for more than a few minutes yet without waking to a seizure. He is also continuing to have mysterious episodes (only while sleeping) in which his oxygen saturation levels drop very low. Kyle has sent for the doctor on call to discuss our options concerning both of these things.

I say that Kyle has sent for the doctor because I'm actually at home. Having gotten about 3 hours of sleep in the last 3 days, I was starting to break down, but it was still hard to listen when Kyle urged me to go home. So I'm lying here on the couch because I'm too sad to sleep upstairs alone, my stomach gurgling with anxiety about what might be going on at the hospital, trying not to waste too much energy wishing things were different.

Next Test, Etc.

We spoke with both a neurologist and a surgeon today. Nothing very new came from the neurologist, other than the go-ahead to try the ketogenic diet once we get Collin's digestive issues all sorted out. The surgeon looked at Collin's g-tube study from this morning and said it looks like part of Collin's stomach might have gotten pushed up through his Nissen sort of like a hernia and is causing an uncomfortable vomiting sensation whenever food is introduced. The radiologist, on the other hand, thinks that Collin's Nissen has 'slipped' and is no longer working properly. In order to be sure, the surgeon ordered a more detailed test tomorrow in which Collin will have another contrast solution inserted through his g-tube and then have continual pictures taken over the course of an hour. This will help us determine whether he is having any actual reflux (which I can't imagine, because after seeing him retch as violently as he did yesterday, there's no way nothing would have been coming up if the Nissen was open) and what to do from here.

Then Collin started having seizures again this afternoon. Honestly, I wasn't that surprised considering the last day he's had. He had barely slept in almost 24 hours, had 'vomited' up all of his medicines from the night before, and hadn't eaten in almost a day. The challenge was getting them to stop so he could finally get some sleep and start feeling a little better. We gave him his evening clonazepam dose a little early, but that didn't do the trick, so (after a scuffle with the nurse) we gave him one more, which also didn't cut it. His evening dose of Keppra seemed to help, but didn't completely eliminate the seizures, which is necessary for Collin to ever go to sleep. So, we ended up agreeing to a dose of Ativan, which finally pushed him over the threshold and into sleep.

Just to keep things interesting, Collin launched into some apnea-like spells in the middle of the night, in which his breathing rate would drop, then his heart rate would drop, then his oxygen levels would drop. Eventually, either on his own or with someone flicking his foot or smacking his cheeks, he would resolve things and continue sleeping. It made everyone nervous though, and the doctor on call ordered him to be put on oxygen to prevent the oxygen saturation drops during these 'episodes'. It was a little bit like wrangling a pudgy little crocodile when we tried to get the nasal canula in, but two adults finally prevailed against him and he has done much better since. Now we just have to determine whether this happened because of all the medication he got tonight for stopping seizures or because he has an actual issue of some sort that could involve having him on a monitor and oxygen at home during the night.

This is the part where I sigh and stare into space to the right of your head and can't think of anything else to say.

We're just tired and worried and beat down. We need some answers and some rest.

Tuesday, January 12, 2010

And We're Back

Collin's retching reached an all time high last night, in both intensity and frequency. He could not catch his breath between retches, his lips were turning blue over and over, and he kept retching even when we had allowed him to empty everything from his stomach.

So, we threw a few things in the car and headed to the ER, where they did a reasonably good job of taking care of us - although I was about to eat somebody's face off if one more person asked me the same questions I've already answered 6000 times while I sat there holding my non-breathing baby. We finally acted desperate enough and Collin had some huge retches in front of the right person, who got us into intensive care and suddenly 5 people were working on him at once. They got him on oxygen to help him during the retches, did an IV to draw blood and start some fluids and anti-nausea medicine, even though they didn't think we were really dealing with nausea. It was pretty awful and stressful while they were getting him stabilized, but we finally got things calmed down to a "dull roar" as the attending doctor liked to describe it (he was one of those doctors who likes to use catch phrases rather than communicating normally and intelligently with parents - he pretty much refused to describe the results of Collin's bloodwork as anything more specific than "nothing exciting") and were officially admitted and moved to a room in the intensive care unit, where we settled in for a night of no sleep.

Today, Collin has had a g-tube study, in which they force a contrast solution through his g-tube and take x-rays as it makes its way through his digestive system. We don't have the report on that, but should soon. All of his blood work has come back normal so far. And, of course, we haven't seen a doctor yet.

One interesting thing that happened is that when we got Collin downstairs to do his g-tube study, he suddenly started crying. This from the kid who hasn't cried in months - pretty much since he started his seizure meds. And that's when I realized that it had been about 24 hours since his last dose of medicine, since he had lost it all into the syringe while he was retching last night. This increased our interest in starting the ketogenic diet while we're here, as it would hopefully allow us to reduce or eliminate Collin's medicines.

So for now, we're playing the typical hospital game of waiting not-so-patiently. Collin is finally resting a bit (we're sharing a room, which makes rest almost impossible for any of us) and hasn't retched in a few hours. More news when we have any.

Wednesday, January 6, 2010

The Wretched Retcher

For a little over a week now, Collin has been retching like crazy. And it's starting to make me a little crazy. Remember, retching is like trying to throw up, only he can't because of his Nissen wrap. It's sort of like a massive dry heave with a violent gagging sound that sometimes makes his lips turn blue because he's pushing so hard and can't catch his breath. So, yeah, it's awful. A whole day of just me and Collin and his retching is enough to make me a little on the tense side when Kyle gets home from work. Tense in a kind of jumpy, angry, post traumatic stress way. (I can make that joke because I've lived through the real thing.)

He only does it at meals, but it doesn't seem to have anything to do with volume in his tummy, because no matter how slow the flow, he almost always does it. He hasn't had any new food (and neither have I) or any new meds. Nothing is different. We've tinkered in every way we can think of and even put him back on Zantac again a couple of days ago, but nothing is working. It's a crappy, crappy feeling to not be able to even figure out what is going on, much less help him with it.

I keep hoping that I will hear back from Cincinnati Children's Hospital so we'll know whether we're going to see their gastro/feeding team soon or not. I'm going to give them until 10:00 tomorrow morning and then start making 'follow-up' calls, which involves a combination of chatting, pleading, and calmly annoying every person I can get on the phone. Collin likes to sit on my lap while I do it so he can listen. It cracks him up. He giggles in the background like a middle school kid making a prank call. I love that kid's sense of humor.

In med news, Collin is less than a week away from discontinuing Sabril, almost halfway through his second Clonazepam wean, and still on Keppra, which seems to be the thing keeping these new seizures at bay.

Friday, January 1, 2010

Trying Not to Say Good Riddance to 2009

It's hard to know how to talk about 2009. It brought me one of my greatest joys and it almost leveled me with sorrow and fear.

I know New Year is the time for resolutions - and I do plan on setting some goals for the upcoming year - but this year it feels important to me to acknowledge the things I'm proud of in 2009. I do want to ask for no comments, please. None of this was done for approval and because of my conflicting feelings about the whole experience, I don't particularly want to be congratulated for any of it. I think it's just good in terms of perspective, so that I don't end the year flipping the bird to 2009.

1. I'm proud that I gave birth without drugs. I don't say this as a judgment on anyone who chooses otherwise and, honestly, I might not do it the same way if I get pregnant again, but I'm glad I did it this time.

2. I'm proud that I survived a terrifying, excruciating, crippling postpartum depression. I worked with every shred of what I had to claw my way out of it, and life has been so much sweeter ever since.

3. I'm proud that I pumped for Collin and have been able to sustain him on my breast milk since he was born. Again, not a judgment on people who make a different choice, but it has been a healing and empowering experience for me in the midst of all of our struggles this year. I pumped in the hospital; I pumped in the NICU; I pumped when Collin was in surgery; I pumped when I couldn't even talk or eat during the postpartum depression; I pumped in the car between Collin's doctors' appointments; I pumped while I was watching him across the room, looking for seizures; I pumped when I was literally sick with worry and exhaustion. And it honestly never bothered me. I was so thankful to have some tangible way to help Collin during all of the countless situations in which I felt helpless to comfort him. He has stayed healthy and strong and handsome on food that I made for him, and that feels pretty darn good.

4. I'm proud that I learned to accept help. It has never been easy for me, and now I realize that my life was the worse for that fact. Being pushed to the brink helped me let go of unnecessary guilt about letting others serve me in love. We received months and months of meals, house cleaning help, grocery shopping help, and financial help. My mom saved us by living with us during the postpartum depression; my friend Shelly came weekly to clean and talk and play with Collin. I have learned to say 'thank you' when people offer to help instead of finding a reason why I don't need it, and just let the gift bless us both.

5. I'm proud that I seized on a creative outlet to expedite my healing process. Back in April, I sat all day every day frozen with fear and despair, but Kyle encouraged me to do something to pass the time, so I started to crochet. I just made squares of different colors - mindless and easy. At first it didn't feel like it was doing anything, but the first borderline happy thought I remember having in that time was when I went to bed one night, knowing that the morning would be much worse than the night, as it was everyday, but still looking forward to starting a a new color of squares (purple) the next day. As I healed, I turned the squares into big stuffed blocks for Collin. Now, crocheting is a freeing activity for me, allowing me to stay close to Collin to attend to his needs while still exploring my own creativity and creating things to give to others.

6. I'm proud of starting and maintaining this blog. It's not always easy to be so honest in this venue and there are lots of times I don't want to think about, much less discuss what's going on, but it's really good for me, and I think it's good for you, too.

None of the things I'm proud of are anything I could have planned for by setting the right goals last year, but they do make me view the coming months and my new goals with a different eye - one that is looking for the things I will be proud of this time next year.