It's Been a While

I haven't been able to get around to posting because it's been so hectic! The first few days (week) home from the hospital were rough. The first day back was particularly scary because Ryan ran a fever of 101.9 and we were instructed to call Children's if this happened. We talked to the nurses and anxiously followed instructions to check for signs of meningitis. If his fever continued, we would have to go back. We wanted to be done with it all! Fortunately we got his fever down and did not have to return to the hospital.

Ryan was clingier than he'd ever been and was super fussy. We've always been fortunate and had a very content baby, so it was stressful and frustrating to all of us. We were giving him Tylenol and Motrin (rotating each one every 4 hours for maximum pain management) but he still seemed to be upset and we couldn't decipher his cries - was he in pain? Was he scared? He seemed so anxious and the worst of it came when he was tired. We think he was very afraid to go to sleep ... possibly because he was worried of what would happen when he woke up. We figured that when he was in the hospital, every time he woke up he was poked and/or prodded at ... blood draws, temperature checks, IV fiddling, etc.  (I used my Mommy Spidey sense to  hypothesize all of this by the way.) Just to be sure, we took him to see the pediatrician. I told them that I wasn't stupid and was aware that he had neurosurgery and it could be the obvious cause of his fussiness, but that I wanted to make sure that it wasn't anything else (teething, ear infection, etc.). He didn't see anything wrong but did contact the neuro department at Children's to make sure that there wasn't a plan of action that we should be taking. They said that Ryan holding down food and not being overly sleepy was a good sign and that we should just keep them posted if this continued. If it did, we would have to go back for a CT scan.

We decided that one thing that would help would be to get him on a better sleep schedule. Baby sleep is like a whole new level of difficulty. They don't sleep well during the night if they don't sleep well during the day. And they don't sleep well during the day if they don't sleep well at night. That seems legit. Well, we decided to start with baby steps and go back to the bed time routine we had before surgery. When it was time to go down, we just put him in his crib. He cried for a few minutes and then SLEPT THE ENTIRE NIGHT. It was literally an overnight change and we were so thankful. Since that night, we've been sticking to a pretty routine nap and bedtime schedule and it's been working. He is not any fussier than usual and seems to be pretty happy. Forget the saying "happy wife, happy life" ... it's "happy sleeping baby, happy life."

We have been so, so satisfied with the results. We don't know if it's the testosterone but his hair is growing back quickly. The stitches are slowly dissolving (it'll take a few more weeks) and he doesn't seem to even notice when I wash the incision in the bathtub. He is crawling around like a WILD MAN and has been pulling himself up wherever he can. I heard from somebody else whose child had the same surgery that her child made major gross motor developments after the surgery. Ryan was already on the verge of sitting unsupported (without timbering after 15 seconds) and was doing his own version of crawling, but after the surgery it was like a switch was turned on. It's not what we expected after laying in a hospital before for three days so we are beyond thrilled. Minus the baby proofing required.

10 days post-op 

Next up:
Testosterone injection #2 on July 24th
Post-op with Dr. Keating on August 5th

Post-Op Day 4: We're Home!

Sorry about the lack of updates! Day 3 was just fine. Being in our own private room was SO nice. We showered and felt like normal people, then got to start catching up on some sleep. Ryan was pretty comfortable even though they took him off the morphine and had him on just Tylenol. The whole day went by quickly and we were shocked when Ryan pulled off his bandages. The results after just a few days were so evident. The night went super smoothly (he slept on my chest for part of the night) other than a minor glitch when he pulled off his heart monitor and the nurses came running in because the alarms went off. Other than that, we all got some good rest in.

He was ready to break free! 

Already the shape of his head is rounder!

Surprisingly happy for having part of his skull removed!

The next morning we were seen by Dr. Keating around 7. He said that Ryan looked great and we could be discharged! He warned us though that the third day is often the hardest in terms of pain. Included in the directions were to wash and bathe his incision daily and to not worry about him bumping his head. Dr. K said that basically, he will hit his head because he's a baby and that we shouldn't be too concerned. We have to schedule an appointment to see him again in a month to check in. It is shocking to feel and see his head now. He has actual soft spots! The top part of the pi is two inches thick and the legs down the back are each an inch thick.

Our hero, Dr. Keating! 

Ryan was so sleepy that the whole ride home he slept, then slept even more when we got home (for about 2 hours). When he got up we were worried because he had a fever of 101.9 and Dr. K said that we should be alarmed if it goes over 101. We called Children's and they said that we may need to go back. We were instructed to keep an eye on his lethargy and fever. We got a little (a lottle) scared when they were having us check for signs of meningitis (seeing if he winced when we pushed his head towards his chest). Thank goodness we got his fever to go down and he seemed content (although super sleepy). He did not want to be put down all day - understandable for what he's been through. His swelling had been going down a lot and was slightly uneven (he slept on his right side so the swelling was pretty bad on that side, making him look fairly lop-sided). We fed him dinner late and gave him a bath then put him in bed with us. There was no way that he was sleeping in his crib alone, we were just too worried for that!

The night was pretty rough. He woke up hysterical every few hours and was hard to console. While I'm sure he was in pain, I think it was also that he was scared that something would happen. From his point of view, the past few nights have been pretty hellish and full of unpleasant surprises. Every time he woke up, somebody was poking or prodding him. And he didn't like it :(

4 Days After

His incision has been cleaned and looks so much better!

Today has been so much better. He got to eat his first solid food since Tuesday and was very happy! We figured out that it was easier to slip his medicine to him through his apple juice and life has been a lot easier since then! He is happily playing with his toys and sitting up nicely. We are working on staying ahead of the pain so that he is comfortable.

Post-Op Day 1: Movin' On Up!

We are 28 hours post-op and doing well! The past few hours have been on the up and we have lots to be happy about. Dr. Keating saw us around 7:30 this morning and said that Ryan looked great. He said that they could remove the drain from his head and approved us moving into a room outside of the PICU. This also meant that he could have his catheter and arterial line removed. He said that this would be super easy and that they would just slide out. But, it was not very easy. They did not just slide out. At all. The catheter removal made him start to fuss, and the arterial line was ROUGH. It was stitched into his wrist so the nurse had to cut the stitches and then slowly pull it out. Poor Mimi and Papa T had to be here to witness it all. It was pretty upsetting because had to be held down as it all happened. After it was removed, we had to apply a lot of pressure to stop the bleeding.

This was the most unhappy we'd seen Ryan pretty much ever. 

After about 10 minutes of screaming and crying, he was calm and happy to lay on our chest.  He slept for almost an hour after it. We were so glad to get to hold him. I can't even articulate the frustration and sadness that we felt just watching him lay there in pain, not able to pick him up or help (I spent a lot of time kneeling on his bed humming and pressing my face against his because it was the only thing that made him semi-content).  During his nap, we learned that his private room opened up on the 5th floor of Children's in the Neuroscience wing.

The room is HUGE and has its own bathroom with a shower. Even better, we have a view of the Washington Monument and will be able to watch the fireworks tonight! A first for all three members of the Johnson Family. 

Ryan got to watch baseball with Daddy!

At this point we were fearing that his eyes were going to be swollen shut.  Fortunately it went down as abruptly as it came and Ryan began showing his bright and happy personality again.

His swelling has been like a rollercoaster - even as I write this blog. Confession - these blog posts take me a LONG time because of all of the interruptions. I would say that could explain the clustercrazy nature of my thoughts but that's pretty much how I always think/write. It can explain the range of developments that I share though. This morning he looked pretty good. Again, not nearly as bad as I expected. His eyes weren't swollen shut and he seemed pretty happy. As the morning went on (and as we moved into our room) he looked much more swollen. He looked like a little boxer but was pretty happy and interested in the move. 

As his bandages get looser (and he starts to tug at them) we are noticing a huge difference. His forehead is already wider. Dr. Keating said that he saw this as he was bandaging his head in the operating room. It's really unbelievable that we can see results so immediately. Good for you, science. 

Now we are settled into our room and feeling great. We had a surprise visitor - one of my students from this year and her mother! They brought Ryan a stuffed animal and balloons and he let out his first "Roonie Scream" out of excitement in days. Now Grammie and Poppie are visiting and he's giggling and playing. It is such a relief. It's like a six-month burden has been lifted off our shoulders and it feels amazing. 

Post-Op: The First Night

I feel like "David after dentist" ... is this real life? It hit me at about 2:30 this morning that I had been awake for 24 hours straight. It also hit me that while my math skills are already pretty disappointing (especially for an Asian ... who teaches math to the next generation), my math skills when I'm tired are embarrassing. So are my memory skills. Thank goodness the nurses and doctors keep track of all the meds going in because I have lost that ability. The coffee and adrenaline had worn off and I was really hoping to get some sleep through the night but it was tough. Around 10:30 after enjoying about 7 ounces of milk, Ryan threw up pretty much everything. We had never seen him throw up the amount that he did and immediately after he just looked so pathetic. Drained and exhausted, he just kept looking at us with his puffy face and sad eyes. Add that to the list of "Things That Make Me Cry" right next to "My Girl" and Sirius Black being killed in book 5. I felt horrible for him and was worried about dehydration and of course the cause of all of this.

The doctors were making their rounds (they travel around in this little pack and all have computers on carts - it's a little funny, especially when you haven't gotten any sleep) and were there at just the right time. They guessed that it was the morphine making him itch (rubbing his eyes non-stop) and maybe also making him throw up. They gave him Zofran for the nausea, then said that for every future morphine dose, they want it to be accompanied with Benadryl. They also started him on Tylenol (administered rectally, poor little fella can't catch a break) and said that if the Zofran and Benadryl don't stop the itching and vomiting, we will have to use something else to manage the pain.

The pain seems to come and go. Sometimes he wakes up and seems perfectly content looking at me while I rub his face and sing to him. Other times he wakes up and is pissed. He throws his legs around and tries to pull out the different cords, then gets further pissed when I tell him that it's not a good idea to pull out different cords that are (literally) stitched into his body.

Right now we are waiting on Dr. Keating to come and check him out and potentially give the go ahead to move out of the PICU and into our own room. It's nice to have such thorough monitoring, but I am definitely ready to be done with the PICU. It was a crazy night with lots of alarms going off and people scurrying around to attend to different kids. I think Ryan took a back seat because he wasn't in immediate danger (understandable) but it was frustrating to be holding my son up after he vomited his own body weight waiting for somebody to help. Other than that, we are hanging in there. All of the nurses here are so kind and caring. I know that when Ryan's in pain, they truly care and want to help him. We definitely made the right choice coming here!

12 hours post-op. There is slight bruising setting in above his right eye, but other than that, he isn't too terribly swollen. 

Post-Op Day 1: 7 Hours Later

Ryan has been in the PICU since 10 am and he's doing pretty well. The swelling has definitely increased some but he remains comfortable in appearance. He has woken up a couple of times - a few of them he just slowly looked around and took everything in. He clearly isn't himself but I don't blame him for acting disoriented ... aside from the morphine, this little man has apparated (nerd alert) multiple places in the 12 hours - he woke up in our bed (sorry I'm not sorry), was shuffled sleepily into the car seat, to the waiting room, to the surgery prep room, operating room, and now in a big hospital bed with a lot of friendly faces - old and new. That's a whole lot of movement for an itty bitty, and might explain why sometimes he wakes up and is pretty upset. 

While I was initially optimistic that his eyes wouldn't swell shut, the nurse said it doesn't look good. Every few hours they check his pupils and she said that his eyes are already getting more and more swollen. Fortunately his oxygen nose-tube thingy is gone. That was one thing that was clearly annoying him and he kept scratching and pulling it out. He has been rubbing his face a lot lately. We think this may be out of habit (he always rubs his face when he's tired and obviously he's very sleepy right now) however we are watching to make sure that it isn't an adverse reaction to the morphine.He's also been constantly kicking off all the blankets, so he's basically just chillin in a diaper (with his cow lovie "Bessie") by his side. We finally got to feed him a little after hours of watching him make that cute fishy-sucking face. Clearly, he was enjoying lots and lots of milk in his dreams. We fed him about an ounce of milk and stopped because we didn't want him to get sick and he was not thrilled about it and made sure it was known. 

Poor guy was inhaling it ...
probably because he hasn't eaten in 15 hours.

He's pretty out of it but still managed to enjoy his favorite TV show, Pocoyo, on the iPad. Those colors and music must be pretttttty trippy to watch while on morphine.  

NEWS FLASHHHHH: Dr. Keating just came in and told us that his vitals look great and he's generating lots of red blood cells. In addition, the blood tube coming out from his head is slowing and starting to clot. He then told the nurses that Ryan is doing SO well that if something happens in the ICU and they need more beds, he can go to a "normal" room tonight! He said that he's the "healthiest kid in the ICU." What whattttt?! Ryan and I fist-pounded over it. 

Post-Op Day 1: We're on the Other Side!

On the road at 5 am!

Ryan had his surgery this morning at 7:30. I woke him up to nurse around 2:30 and we left the house at 5, arriving here at 5:45. Side note, I always complain about the traffic living in the DC area, but having such an amazing doctor and facility so close to our house has been a true blessing. 

They took him back around 6:45 to ask a million of the same questions over and over again. We met his medical team 5-7 doctors would be there during his surgery and then had to hand him over. I was a little disappointed that I wouldn't be able to be with him while he was sedated. They said that policy is that if the babies are under a year old, they don't really need their parents because stranger anxiety hasn't really set in yet. I was a little surprised because stranger anxiety kicks in like crazy around six months. 

Before they took him back. Poor little guy didn't even know what was happening :( This was also before all of the doctors starting coming in wearing their caps (Ryan is terrified of people in hats right now). 

I'm not going to lie (I really don't lie so I don't know why I always preface comments with this) ... that was the hardest thing I've ever had to do in my life. I had decided beforehand that I wouldn't be too upset in front of Ryan because I didn't want him to sense it. The few times that I've cried in front of him he's definitely looked confused. I couldn't find a "good-bye" to suffice ... a kiss didn't seem like enough. Five kisses didn't seem like it'd be enough. We handed him over and the doctor could tell it was difficult for us. "One more kiss" she said :( We moped back to the waiting room and I bawled in my mom's arms.

Dr. Keating said that it would take about an hour to get him in and then his work would take about an hour. He warned us first though that things happen and not to freak out if the time went longer. The cool thing about Children's is that they have a huge screen up where they show the progress of each case. That way we weren't completely clueless to what was happening.

After 15 days 2.5 hours Dr. Keating came out and said that everything went really well. Ryan didn't need a blood transfusion (woohoo). He said that there's a 50/50 chance that he'll need one tonight because he lost about "a quarter tank" (surprisingly, his medical lingo not mine). He also didn't see any of Ryan's brain or a loss of any spinal fluids. After today he will hopefully be moved into his own room. He took us to the PICU to wait to see our baby boy and after about a half hour we got to see him.

When we walked into the room we both just broke down. He didn't look too different, only slightly puffy. Dr. Keating said that because of the position that he was in during surgery (face down with a lot of fluids pressing down), it would be like one of us drinking a ton of beer and eating pizza and then sleeping face down (again, his words). But other than that he looked so peaceful. Since then he's been touch and go. He wakes up and fusses and whines and after about 5 minutes goes back to sleep. He's on morphine to help but they said that the pain medicine isn't necessarily because they know he's in pain ... his nurse said that he has about 100 reasons to be upset but they want to address the one (pain) that they can. He has quite a few lines running out of him right now: oxygen out of his nose, a drain coming from his head filled with a pinkish/reddish fluid, two IVs out of his feet, a catheter, and an arterial line (to take his blood pressure, take blood, etc.). The oxygen tubes will hopefully be out in a little once he's more awake and the other lines will ideally be out tomorrow morning. Ideally he'll be able to drink some breast milk in a little. We are waiting to see if we can get into a private PICU room. His nurse said it likely won't happen because they are completely full, but we'll see! And let's hope because there is a baby in here with us who is NOT happy. And has not been happy for like two hours.

The swelling wasn't nearly as bad as I had prepared myself for. I know that it will certainly get worse as the day goes on though.

If only they had a bigger bed.

My brave little man. My whole heart. <3

Pre-Op Pictures

At his pre-op appointment, Dr. Keating measured Ryan's cephalic index to be 0.65. 

These are all recent pictures of the effects of his sagittal craniosynostosis. 

PS I think he's just about the most adorable baby in the world. 

Okay, THE most adorable baby in the world. The universe. Ever. 

Pre-Op Appointment 7.1.13

This morning we met with Dr. Keating at Children's to prepare for Wednesday's surgery. We had an 11:00 appointment and were seen at 1:30. The man's incredible bedside manner is apparent in that he is almost always running very behind with his appointments. The only thing that kept us patient was knowing that he wouldn't rush us and would answer our long list of questions. And also that we would from now on always get his earliest appointment possible :)

We were first seen by a physician's assistant to get general information on Ryan's health. They of course just want to make sure that he's healthy going into surgery. Other than a minor case of thrush and some eczema, he was cleared. We were also given a consent form that was painful to read. I know they're just trying to cover their legal butts, but making a parent sign off on the possibility of a coma, stroke, etc. etc. DEATH is just cruel. Understandable in this day and age, but cruel nonetheless. Dr. Keating assured us that many of the things written down are incredibly rare ... but I wanted to interject and say "yes, but so is the incidence of a baby having cranio and a hypospadias." But, like I preach, positive thinking.

He explained that on the day of, here's what to expect:

5:30 am: we show up with Ryan. He can't eat solid foods after midnight (I wouldn't call what he eats solid food, but I knew what they meant) but can breastfeed 4 hours before showing up.

7:00: they will take him back to get ready for surgery. We can go with him up until he goes into the operating room. They will use a gas to sedate him and then once he's down, put in the IV, breathing tube, etc. They will come and tell us when he goes into surgery. Dr. K said to not be surprised if it's an hour between when we drop him off and when he actually gets started. He described the procedure again and we were delighted to hear that babies typically only lose about two tablespoons of blood during this procedure and that he can quickly "plug" any bleeding (clearly my own medically-correct term). There is about a 25% chance that he'll need a blood transfusion and in that case it will be on hand. I originally wanted to see if we could get his blood type and then have a family member donate, but he assured us that it was okay and that the blood that Ryan would be getting would likely be screened better than our own and that it would be safe. I asked him if his brain would be touched/seen (I know very little about the anatomy of the skull) and he said that it's very rare that they cut through that far. It would also be rare to see any spinal fluid leak out. But again, he'd be able to plug it up. When it's all done, he will come back and get us, let us know how it all went, then take us to the ICU to see Ryan.

For the first day, he will be kept comfortable with valium and morphine. I was really concerned about this because he's in that active, crawling, grab everything stage of babyhood. I couldn't imagine how he'd handle a bunch of tubes hanging out of his body. He will have his IV, a drainage tube from his head, and a catheter. He said that he will be very mellow.

On the second day, they will "painlessly" remove all of the tubes and he will be more free to move. He wasn't positive on whether or not we'd get to hold him on Wednesday but said Thursday we would be good to go. At this point, they also will likely move us out of the ICU into a private room. He warned us that Ryan would look pretty rough on day two and that the swelling could be pretty bad (even swelling his eyes shut). I read on another blog that there was no purpose in looking at pictures of other kids post-surgery because there's no way to prepare yourself for what your baby will look like. I can't even begin to imagine.

After the first day, Dr. K said that the pain will be able to be managed with Tylonol. Awesome! Because watching your baby in pain and not being able to help is pretty much the worst thing you'll ever have to experience.

If all goes well, he will be discharged on Friday and will have a follow-up in about a month to check on everything.

We left the appointment feeling ready ... not necessarily better about it all ... but ready. We had to take Ryan to get a pre-op blood draw, which made me so thankful for the fact that he won't have to be awake for an IV insertion on Wednesday.

Dr. Keating described the people who draw the blood as "vampires" who do an amazing job and for the most part, he was right. He cried a lot, but it wasn't as bad as we thought it'd be. 

I remember writing the big date on the calendar and thinking it's so far away and yet it's already here. I'm experiencing the biggest mix of emotions - excitement for it to be over and obvious fears of the worst. It's been six long months of this day looming and countless hours have been spent fretting and fearing this day. I've spent a lot of time crying and dreading the moment where they say that they need to take him back to the operating room. For me, this is unfathomable and I don't know how I will be but I don't think it will be pretty. But all we can do is stay positive and hope for the best.

One very bright thing that happened this week was that we got a care package from the Cranio Care Bears. http://craniocarebears.org/ is an organization created by two moms with cranio kids. Their mission is to spread awareness about Cranio and help relieve the stress from families going through it.

Among the care package was goodies for the hospital (for Ryan and us), a checklist of what to pack, and a hat for him to wear after surgery.  They also included a prayer chain to put on his hospital bed filled with encouraging and inspiring quotes. We will definitely be paying it forward to this organization and have considered setting up a collection of donations to send back to them in honor of Ryan's first birthday.

Ryan especially loves these "Click Clack Keys" that they included.

It is the kindness of this organization, our friends, and family that have kept us going. We thank all of you for the continued support throughout this bumpy ride.