Monday, May 23, 2011

Rule #114: Chick's dig scars

Today was the day we got to take the dressings off Graham.

From a nursing point of view, his incisions look really good, no redness, no signs of infection. Nice and straight, they should heal nicely.

From a parents point of view, I kind of liked the dressings better :) Don't get me wrong, his shunt is still not anywhere near the size I thought it was going to be, but now with the dressings gone, it's quite easy to see. Once he has hair and has grown a little more, I'm sure I'll hardly notice it at all. And appearances really don't matter when it's something your brain development. But, it's the first time I've seen his full shunt, and I feel entitled to react a little. :)

Here's Graham sporting his new soon-to-be scars.

On a non-appearance related note. He is doing great! He stopped taking any medication the second day we were home...absolutely refused in fact. He seems to be completely comfortable again. He's still not quite eating as much as before surgery, it is kind of hit or miss. I think he's getting enough, and he seems to be getting a little better everyday. It could also be affected by the fact that he's decided it's worth while to eat solid baby foods! It just took us two whole months to convince him. He's still not eating as much solid food as is recommended, but we are working on it. It's no longer my least favorite part of the day. ;)

I am amazed at how well he has recovered, and how he seems to have no idea that anything happened to him. My little ball of happiness continues to be just that. Happy.

Wednesday, May 18, 2011

Rule #113: There's no place like home

I am still surprised how well Graham recovered after surgery. He had a pretty decent night, and I'm sure he would have slept quite well, but he was being woken up every four hours to be checked on. Which meant that so was I. But all in all, we slept as well as you can in a hospital.

The next morning he went for his CT scan and his X-rays to look at his shunt, and make sure everything looked as it should. He did great for the CT, it only took about 5 minutes and he was distracted by the horribly annoying wand that had music and seizure inducing lights. (not really, but it almost gave me seizures)

The X-ray was a completely different story. He had to lay on his right side and was being pinned down by the tech, and was wailing! It was so sad. I've never heard him cry like that, and it took almost 20 minutes to calm him down afterward. :(

As traumatic as that was for him, all the images looked great! He was still eating well, so that meant that we were able to go home! It blows me away that he was discharged just over 24 hours after surgery.
While we waited for the discharge papers, and for Alex to come join us, I played dress up with Graham. Doug bought these baby scrubs when Graham was born. There was no way they would fit him then, but they BARELY fit him now. (fatty) I figured the hospital was the perfect place for this outfit. Doesn't he look adorable?
It true baby fashion, Graham fell asleep 10 minutes before we got our discharge papers. So we decided to let him sleep, and we would leave whenever he woke up. Two hours later, and a much needed nap for myself, we were packed and ready to go!
It has been so nice to be home. There is so much more entertainment here for Graham, and for me. I was getting tired of being the only one to keep him occupied and happy. And it was only for one day! I think I might have gone crazy had it been for several days.

We tried to get a picture with both boys, to show how nice it was to be together as a family. You can see the progression.....
Ahh, it's good to be home!

Tuesday, May 17, 2011

Rule # 112: Post-op is better than "dur-op" which is better than pre-op


It's been a long day. Like, crazy long. Where every minute was 7 hours kind of long.

It started with waking up in the dark at 6:30, waking the kids at 7, throwing them in the car, dropping Evan off with my sister (thank you!) and heading to the hospital. We were to check in at 8:15. We had woken Graham up at midnight to feed him one last time. Little did we know his fasting would end up to be over 12 hours....
After checking in, and getting his vitals done we were brought to the "toddler pit" to wait for the surgeon and anesthesiologist. We waited for over two hours! The surgery prior to Graham's took longer than anticipated. I swear, that was the longest two hours of my life. Trying to console and entertain a hungry 7 month old for that long is physically and emotionally draining. He did quite well considering that his body was eating itself :)

Graham got Dr. Kestle's initial on his head, to mark where surgery was to be done. It's kind of hard to see, Graham's a wiggle worm, but it's a K.

They finally came to get Graham around 11:20. I was taken back to the recovery room around 12:45. So surgery itself went rather quickly. It was just waiting for an operating room that took so long.

He woke up super hungry, and ticked off that they were trying to feed him sugar water. Apparently that's just as bad as pedialyte to him. I suggested they give him apple juice, which he took, drugged up and still kind of mad, but at least he took it.

We then moved over to our hospital room on the infant surgical unit. He promptly fell asleep, and didn't appreciate that the nurse had to do her job before she could leave him alone. :)

He came back with three tiny dressings. Two on his head and one on his belly. I can't even see the shunt! It's not what I expected at all. The shunts that I see on the babies at work are huge for their little bodies. I guess I didn't anticipate the difference a few months in age/size can make. I don't know what it looks like underneath the dressings. But I can only really feel the tube at his neck, and then I lose it, I can't trace it down his abdomen at all. I'm very pleased. If this is something that he is going to need for the rest of his life (which we still don't know that answer) at least it won't be very noticeable.
Dr Kestle said that when they made the incision the CSF squirted out a bit. Meaning in was under a fair amount of pressure. I feel so much better knowing that his poor little brain isn't being squished anymore. It will take months and months before we know how long he will need this shunt, or if we will have to move it. But I'm okay waiting. The process has been started, and he's doing very well. We won't be getting another MRI for 3-6 months. I'm guessing he'll be getting an MRI around his birthday. (some present right?)
He threw up some apple juice initially, but has since kept all his fluids down. Including three bottles of formula so far. He's my little rock star. You'd never know that he had surgery today, except for his little dressings. He is a tad bit needier, and a little more fussy than normal. But if that's the worst of it, I'll take it!

We still need to have a CT scan in the morning, to make sure that the shunt is working properly. If all looks good, and he is still eating as well as he is, then we will be able to go home tomorrow! Yippie!
We are all very excited about this. Alex and I both took a little cat nap this afternoon while Graham was sleeping. I will be staying here tonight, and getting as much/little sleep as a hospital allows. I will be very grateful to be back home, in my own bed tomorrow. *fingers crossed*

To prove how well Graham is recovering, enjoy this little video of my ball of happiness. :)

Saturday, May 14, 2011

Rule #111: Let the sunshine in

Lest you think our house has become nothing but worry and stress, here are a few pictures showcasing what else we've been up to since the sun decided to join the world again.
Alex has gotten bonsai fever again.
We've also been planting trees like crazy. Five trees just this week!
These first two are coral bark maples
A shade tree for the backyard. There are two like this.
A nectarine tree to replace the one from last year that died.
Chillin' in the backyard
Park playing
Making awesome look easy

Rule #110: The sooner the better

I finally heard back from the neurosurgeon on Thursday. After much effort on my part. I still think Dr Kestle is a very nice man, but the office system is an absolute joke. I called so many times Wednesday and Thursday, just to get to talk to the Dr to see what was going to be done. It shouldn't be like that. And I'm not upset that Dr Kestle seemed to forget to call, he's a very busy man. And I'm positive if he had been given the message, he would have called right back. Sigh. I hate being an outpatient. If we have to be a patient at all, I'd rather just be inpatient.

That being said, I now know the plan for Graham. Dr Kestle consulted with his fellow neurosurgeons and decided that it's most likely that Graham had an arachnoid cyst that ruptured, and that's why there is fluid on both sides of the membrane.

The first priority is to remove the fluid in the subdural space, since it's supposed to be completely empty. This may or may not also drain the fluid in the arachnoid space. We might also discover that as the fluid on the outside of Graham's brain drains, he may start accumulating fluid on the inside. Which would mean moving the shunt from the subdural space to the ventricle. Dr Kestle couldn't tell me how likely this scenario was, just that it was a possibility. I appreciate being well informed. I would not do well being blindsided a few months from now.

The radiologist also believes that Graham's frontal lobe didn't form properly. It's too thick, and doesn't fold in the right ways. It could look like this from all the pressure/fluid on it, but the radiologist doesn't think so. He thinks it's cortical dysplasia, which is associated with seizures. (I know, just what I wanted to hear right?) He doesn't think the risk of seizures warrants putting Graham on anti-seizure medication right now. But if he does seize at some point in his life, it would be a likely cause.

As far as surgery plans go, they will place a subdural shunt that will travel behind his ear, down his side and end in his abdomen. The CSF that drains with then be absorbed in his abdomen. I was told that recovery time was one to two nights in the hospital. But I have a hard time believing that. Surgeons often underestimate how long recovery really takes. I'm hoping no longer than 4 days.

I'm still working on accepting a shunt, because I really didn't want one. But it is what's best for Graham. It's possible the shunt will come out after a few months, or he might need it for the rest of his life. There are still a lot of unknowns, but I am grateful that surgery is only three days away. It will be so nice to get this part behind us.

Monday, May 9, 2011

Rule# 109: Appearances can be decieving

We met with Dr Kestle, a neurosurgeon, today. I wish that I could say exactly what is in Graham's head, but it's still unclear.

The MRI that we had done on Thursday wasn't consistent with an arachnoid cyst like we thought it was. It's still fluid,so it's not a tumor-like mass. I'll try to explain it as best I can, but bare with me. It's about to get complicated. :) I drew this picture quickly while at work. I realize it's small and difficult to read, but it can just be an illustration to look back to.Normally CSF stays inside the arachnoid membrane, surrounding the brain. With Graham, for unknown reasons, the CSF is on both sides of the membrane. It doesn't appear that the membrane has created a pocket filled with CSF, which would be an arachnoid cyst. But somehow the CSF is leaking into the dura space as well. All of that fluid is significantly pushing his brain off to the left. It truly is a miracle that he isn't compromised from all of that pressure. I look at him, and I'm just amazed and what a happy, seemingly healthy boy he is. Looking from the outside, I never would have guessed/known.

What all the ends up meaning, is Graham is going to need a shunt from the outside of his brain, down to his abdomen to drain all the fluid. He might only need it for a few months, or he could need it for the rest of his life. There's no way to tell at this point.

I'm bummed. I really didn't want a shunt. Like, REALLY didn't want one. I have to keep reminding myself that the shunts I see are for different reasons, on sicker kids, and complications don't always happen. They wouldn't keep doing shunts if they weren't successful MOST of the time. So this is what I'm working on accepting.

Throughout this whole process, I have never once feared for Graham's future, I have always felt/known that he will be fine. It needs to be fixed and he will be fine. I was hoping for a different kind of fix, but regardless, the outcome will be the same. I know it will. The Lord will take care of my son. I have no doubts. That doesn't mean I've embraced the shunt, or that I won't be anxious for surgery. It doesn't even guarantee that he won't have any complications. But in the grand scheme of things, I know that he will be okay.

Dr Kestle wants to show Graham's MRI to a few of his colleagues, get second opinions and make sure they have the best course of action for surgery. I appreciate this more than I can say. I'm grateful that he is humble enough to ask for help when he may need it. It gives me great faith and confidence in his ability to help my son. I should know the consensus on Wednesday afternoon, and hopefully we will schedule a surgery date as well.

I'm ready for all of the waiting to be over. I'm ready to have the nightmare of surgery and the hospital recovery just a horrible memory. I wish I could just *poof* to future time in Graham's life. But since that's not the point of this life, to skip the hard stuff, we'll just deal with what we're given and be grateful for his overall health and temperament.

Thank you for the continued prayers and overall support. Keep the prayers coming, they can do nothing but good for my son.

Friday, May 6, 2011

Rule#108: Deja vu is overrated

Graham got to experience deja vu today as he prepared for his MRI for the second time this week. Poor kid. A few things in life are worth repeating, but fasting as a six month old is not one of them.

He actually did fairly well. We discovered that Graham will NOT touch pedialyte. Not even if he's starving. Good thing he's old enough now that he could have apple juice diluted with water to count for his clear liquids. He was even able to take a nap during his fasting period. He's such a good kid.

We got to the hospital, and I was worried that the same callous nurse that sent us home tuesday would be there again today. It would have been very awkward for me, I was kind of dramatic last time. (not on purpose, I was just devastated beyond my control) Thankfully, she wasn't there. The nice receptionist remembered us, and apologised again for tuesday. And the rest of the staff was wonderful.

They took Graham to get checked out by the NNP and chart his vitals. He smiled and played the whole time. Was very interested it all the new toys :)

He thought the oxygen tubing was awesome! I just loved seeing how focused his hand-eye coordination has gotten.

Despite being hungry, he waited as patiently as I could have hoped for. Better than I had hoped for really. If it seems strange that I'm smiling prior to my sons MRI, it shouldn't. Not if you know me. Information is power, and I was about to gain some more power over my son's fate. I was anxious, but excited.

Graham didn't even cry when they placed his IV. He whined a little, but whined and fussed the most while they were tapping his IV in place. The nurses said he was by far the best patient of the day! That's my little ball of happiness!

What in the world is this THING on my hands?!

The medication that they gave Graham to sedate him works incredibly fast! I was holding him in my arms, and I swear, ten seconds latter he's passed out, slumped back, breathing deeply. That is some powerful stuff!

They whisked him away and set him up in the MRI machine. They wouldn't allow me to stay and watch, which I was bummed about. But there was another MRI going on and they had to protect patient confidentiality. blah blah blah. Oh well. I'll get over it.

The MRI lasted about 30 minutes. Alex and I got some dinner while we waited, I was preparing to work my shift later that night and knew that was the only chance I was going to get to eat.

The recovery went very well also. What else would you expect from my little rock star? I mean really, he's just amazing. He slept for a little over an hour, and then the nurses woke him up. They found out I was working that night, and wanted to try and have him wake up before I had to leave.

He was a tad bit cranky, which is a common side effect of the medication. But he drank more apple juice and then finally actual formula! I think he was pretty excited about it, but he couldn't show it because he was still a little drugged. By the time I had to go to work, he was able to go home as well. It was perfect timing. I am so grateful to have this MRI over with. They wouldn't tell me what the MRI showed, because they aren't trained to read them/they aren't supposed to. But I was able to coax a little bit of information out of the nurse.

I asked if it was as big as they thought, to which she looked at me, paused and replied "it's...significant in size." She also thinks he may have an ear infection. Which surprised me. Graham hasn't seemed uncomfortable or irritable at all. But then again, he's a ball of happiness. I'm not sure if balls of happiness are capable of those emotions. :)

While I do wish I knew exactly what the MRI showed, I'm okay to wait. We have an appointment with Neurosurgery on Monday, and we will get some answers then. I'll actually get to talk to SOMEONE who will know what we can do for my son. I'm excited to have a plan, even though that plan with involve brain surgery on my baby. At least the cyst will be taken care of, and I will be able to breath again.

Monday, May 2, 2011

Rule #107: Fasting is not just for adults

This weekend was lame. I went back and forth between peace and anxiety/fear. I don't do well with minimal information, or a lack of a plan. I just don't. My mind can't go forward, because I don't know what that forward is, so I have no other options but to go back and forth between emotions. I just felt stuck.

While I don't have all of the information yet, and I still don't know when surgery will be or what type of surgery even, I finally have a date for the MRI.

They were looking for a morning appointment, because Graham will have to be it was over a week away. (Which I was not okay with) But he only has to be fast for four hours, so I scheduled the MRI for 3:30 tomorrow. He usually takes a pretty good nap in the early afternoon, so hopefully he'll be asleep while he's fasting.

I'm so relived to have a date for the MRI. But now comes a whole new variety of anxiety.

I'm nervous. I won't lie.

If the cyst was large enough for them to find it on ultrasound, how big is it really? Where exactly is it? What will these answers mean for surgery options? The trouble with me is I know too much. But the real trouble is I don't know enough, I need more facts. Until I get all those facts my mind is racing a million miles a minute.

Looking at Graham you would never know he has something pushing on his brain. He's still just as happy and joyful as ever. He is still sleeping/eating/playing well. All that I could ask for.

Thank you all for your prayers and concern. We appreciate it very much. I am not sure how quickly after the MRI I will have more information. But I'll try and let everyone know when I do.