Friday, March 21, 2008
Recovering
He is also taking awhile to bounce back because he’s gotten a nasty cold – lots of coughing and congestion, and water eyes. Poor kid can’t seem to catch a break! Its kind of ironic, I spent the whole winter being germ phobic and protecting him from colds, and here at the end of the season, he catches something awful. The timing would suggest that he picked it up at the hospital, which is no surprise. With so many people having their hands on him, you can’t expect that they are as disciplined and rigid about spreading infections as the nurses in the NICU. I wish I could have stood by his bedside with hand sanitizer as the gatekeeper for every nurse and doctor that handled him. Ha.
We saw his pediatrician this morning, and it seems he’s on the tail end of the cold. We were concerned about his ears, eyes, and lungs, and they just wanted to get him checked out. They sent us home with some ointment for his eyes just to be safe for a few days, but said his ears and lungs were clear (whew)! Since he is already on nebulizer treatments every day, they said it is the best thing for him right now, and probably why the cold didn’t get worse in his lungs. With any mercy, he’ll really be back to being our little Lucas in a few more days. I spoke to the neurologist yesterday and she confirmed that the dose they gave him was very large and much quicker than they normally administer it, so she was not surprised he was very lethargic and "loopy" (as the exact medical term she used). They usually build up the dose slowly, but since he was having them so frequently in the hospital, they gave him the full dose right away. She said if he does not adjust by next week, then she’ll lower the dose after she sees him next Friday, but she fully expects that he will adjust with more time.
So, that’s the latest. A tough couple of weeks! Our nanny has even been upset seeing Lucas this way, she waited for our calls each day to update her when he was in the hospital, and she cried the first day she saw him after surgery, and has been very solemn since then watching him struggle this week. Sadly, several years ago she lost a daughter from cancer at 6 years old, so I think all this hits a personal place with her and she cares so very much for him. She always tells me he is a miracle and that she and her family pray for him every day. I found myself trying to comfort her this week, saying "he'll be ok"... strange to be trying to comfort someone else while I'm scared to death! But, just like us, I notice that she is in a much happier mood today because he is notably better. She's really special! We were supposed to travel to Alabama to visit Bran's family for Easter/Spring Break, but unfortunately one of Bran’s kids is sick today, so it looks like we’ll be hanging around here, which will probably be better for everyone. Maybe we’ll get our swingset put up for the kids in the backyard this weekend, after the Easter Bunny comes! Regardless, fingers crossed for a nice, easy, uneventful weekend!
Tuesday, March 18, 2008
Home
Lucas is stable and is eating really well, maybe he’ll finally start putting on some pounds! He has not had any seizures since discharge, but he is very sedated from the medication. It’s a trade-off, I guess. The major side effects of the medication are drowsiness, lack of muscle control, just seeming ”drunk.” After a few days of these meds, he is definitely all of these. Poor thing, his eyes are half shut and he can’t hold his head up very well now, which is disappointing and emotionally hard for me to see, since he was really getting good at that over the past couple months. They say it is temporary as he levels to the medication, which could take up to four weeks. I really hope this is true and it is happens more quickly than four weeks…especially since his BIG first birthday party is coming up! I think we’ll be a little further behind now on the milestones, as gaining strength and control to sit up may be a ways off. We go back to the neurologist next Friday. He is smiling and interacting a lot though, and it appears that his pain has decreased and he is not crying near as much… which is the most important thing of all. I’ll keep everyone posted as we go through this week. Thank you to all our caring friends and family, that supported and stayed right there with us hour-by-hour this weekend. I think our text messaging activity hit an alltime high this weekend!
Sunday, March 16, 2008
Seizures
The ER was not fun, as we dealt with multiple, new
Seizures can occur for these reasons… 1) infection; 2) shunt malfunction; 3) trauma or irritation to the brain; or 4) tendency to seize (meaning he’s just a kid with a condition that seizes under stress). Over the course of Saturday, he had four more seizures. He was hooked up to an EEG for an hour, and the doctor made another dreaded lumbar puncture attempt. This time it was the Attending Neuro Physician with lots of experience, and she could not get any fluid either after two tries. So frustrating! And she was upset too. They really wanted to get fluid because so they could completely rule out any form of meningitis. This was a huge concern since the surgery was just a few days ago, it could be very likely that bacteria was introduced.
They started him on seizure medication Saturday evening and planned to discharge on medication Sunday morning, but three seizures came after his first couple doses of medication. Then on Sunday morning, he seized again—twice within 15 minutes. So we spent Sunday with Lucas hooked up to an EEG the entire day. He got a loading dose (lots of medicine all at once) of Dilantin to stop the seizures right away while the other medicine, Keppra, takes builds in his system. This meant that he had to have an IV… ehhhh! So, he was stuck again, but this time by the *best* critical care IV nurse. She was awesome and got him on the first stick. Of course, I left the room again. She actually remembered us from the NICU, we were so grateful they called in the big guns for this one.
Things got better throughout the day – no more seizures! In total he had twelve from Thursday-Sunday. The doctor decided today that since it had been 48 hours and no other symptoms had creeped up, she felt comfortable saying he was infection-free (fingers still crossed for a few more days). Now, the question is, was it just trauma to the brain from the surgery or does he have a tendency to seize under stress and will be on medication for life? We’re not sure at this point, and everyone has their own theory. We are hoping it was just a one-time thing due to the surgery, but either explanation makes sense (because kids with IVH/brain bleeds have a high risk for seizures). Our neurosurgeon said that it is entirely possible it could be irritation causing them, because one of the cysts beside the ventricle that was just affected already appeared to be getting smaller in the most recent CT scan as compared to Monday (which is a good thing), but it also means that part of the brain has been affected and could be irritated. She also said the cyst is in the particular temporal lobe known inducing seizures. Makes sense to me, but my brain hurts just thinking about all this stuff.
So it is 9:30 pm and we are about to be discharged…what a horrible weekend, and we are completely exhausted. Not only are we not sleeping well in the hospital (alarms going off through the night, tending to Lucas crying, doctors & nurses constantly coming in the room, etc.), but its been draining to take care of a very upset, cranky baby all week, especially while being displaced outside of the comforts of home. I have sang more songs, and cradled and walked with him more in this week to calm him down than ever before. I’ve said a lot of prayers, and at the same time questioned the existence of a God that would inflict so much pain on a helpless infant. Then there’s Bran helping take care of Lucas in addition to taking care of his upset, cranky Mommy! As always, he was our rock during these tough days and keeps everything in check… Lucas has a really great Dad!
Although a long few days, at least he is going home, and so thankful he is not staying for another surgery or round of antibiotics. He’ll be on seizure medication until we follow up with our neurologist and figure out a plan, and we have been prescribed an emergency dose should he begin to have multiple seizures at home. On the good side aside from the seizures, he seems to be getting back to his old self, and much more smiley and happy today (unlike all this week). His left eye is getting better too—still very dilated, but the swelling is starting to go down. And, a very interesting result from the surgery—his left eyeball is sitting normally.
Wednesday, March 12, 2008
Post Surgery
Lucas’ surgery is over and we are back home today. Everything went well on Monday, however, we ended up having to spend an extra night at the hospital due to some questionable reactions to the surgery (which is why I am just now getting to this update). Dr. Yaun reported that there was definitely pressure when she went in, and feels that we caught this before Lucas would have eventually started showing more severe symptoms – like extreme headaches, more severe apnea, throwing up, etc. The good side of all of this is that they caught it early through the sleep study before it could become more of a problem for Lucas.
We had to stay longer because Monday night around 11 pm they noticed that one of his eyes was dilated, while the other was not. This sent everyone into a panic and within 15 minutes we were downstairs in Radiology getting an emergency CT scan. We didn’t really know what they were looking for, so it was pretty scary. The neuro assistant on call that night even drove back into the hospital at midnight because of his eyes and to see the scan. She said, “When I heard about his eyes, I was so worried, and I just had to come in here and see him for myself.” But, she was really happy to tell us that it was ok, and that they were worried he had bleeding in the brain. She said usually dilated pupils can mean there is a significant amount of bleeding happening (which would have been very bad). I sensed that she was as relieved as we were, and happy to tell us that the new shunt placement was fine and everything appeared to be working well.
When our neurosurgeon saw him on Tuesday morning, she decided we should stay through the day to see if his dilation and swelling changed. It didn’t really improve through the day, so we spent another night to be under close watch because they didn’t have a clear answer as to why this was happening. He had a quiet night last night, so we were discharged today, although his eyes are still the same. His left eye is constantly dilated, and it is not really moving with the right. It is also swollen and only opens half way, so the poor little guy looks like he’s been punched in the eye.
They believe the reason for the change is because his head is reacting to the change in pressure, and one of the visual nerves that controls dilation runs directly under the area that was just affected by the shunt. Hopefully this is true and this reaction is temporary as his brain figures everything out again. Normally children with hydrocephalus have a more severe block, and it only takes a few days to build pressure and make them sick (which is relieved through surgery and they tend to feel instantly better)… but, as we’ve always known with Lucas, his block is not so significant to make him build fluid quickly. It tends to build over a long period of time, and then eventually hits the tipping point (as we saw in him in the NICU when we were unsure if he needed the shunt the first and second time). They think that Lucas was adjusting to the pressure as it built in this area little-by-little, with his eyes also adjusting to this pressure… and now that the pressure has suddenly been relieved, it is throwing things off, with the pressure not being equalized. The neurologist said that this is probably causing him additional discomfort on top of recovering from the surgery.
He’s getting better though, and seems to be in better spirits today. He has some good moments where he is cooing and smiling which tells us he’s going to be fine, but they do end pretty quickly as he is very, very tired. He’s been crying a lot, which breaks my heart more than I can even express. For a baby that seriously never cries—to hear this tiny little guy whimper and not be able to anything about it is indescribable. It was much worse this time than when he was in the NICU, now that he’s older and can express much more what he’s feeling. I think we expected that this would be quick and fairly painless, but unfortunately it wasn’t easy for him. I also think we’ve become a little desensitized to these surgeries having lived through the 5 months in the NICU, and this one in particular was described so simply to us (in comparison to installing a full shunt). But if you think about what they had to do… they made an incision in his head, drilled a hole in the skull, and pushed a catheter through the brain matter to place it into the ventricle inside the brain. This is no small task, and of course, this was rough on him! I hope we never, ever, have to do this again!
I know tomorrow will be a better day, each day has been better than the previous one– he is a trooper and I’m sure he will bounce back with more time. Now that we’re home and he’s in his familiar crib, he seems to be sleeping a lot better, and he’s eating well – all good signs. Thanks so much for all the well wishes and prayers that we’ve received this week, and to Gran and GranDan for being there with us at the hospital!
Sunday, March 9, 2008
Surgery is Scheduled
On another note, we had his first professional photographs taken this weekend in Charleston, SC (Mary Ann's good friend shot them yesterday -- an awesome photographer)! Very exciting for us, however, our "little angel" was not so cooperative! Our little guy that never cries and fusses, refused to nap that morning...so add that to teething, and he was a cranky, cranky, little man. We'll see what we get! She's really great, so I'm sure she got some good ones, I watched some very sweet ones taken with Bran and Lucas together. Pat has graciously offered to shoot Lucas again today if he's in a better mood to try to get some smiles!
Monday, March 3, 2008
MRI Results
The great news is we learned today that he does not have a chiari! I can't tell you how much relief we feel! The MRI did show, however, that the 4th ventricle has expanded significantly since January and is most likely the culprit to his apnea spells and loss of appetite. That ventricle is now bulging with fluid to the point that it is putting pressure against the brain stem. This 4th ventricle has a line of scar tissue separating it into two areas, causing only half of it to drain (this most likely happened as a result of the meningitis). The existing shunt is not able to drain the walled off portion. She is recommending surgery to place another catheter into that part of the ventricle and will splice it into the existing line. In other words, he will still have the same shunt, but it will be spliced to drain two separate areas.
Instead of being upset about this, we are actually very relieved (since we've spent the last two weeks worried about other problems). It is nice to have an answer, or something to blame for the apnea. We certainly don't want him to have another surgery, but if we can push through and just get this over with, he should start feeling better and hopefully sleep better without all the apnea spells (and maybe we can get rid of the oxygen tanks)! Plus, by relieving this last bit of pressure, it can give the brain even more capacity to expand. You have to wonder how much this last bit of compression on the left side is impacting his development...it will be good to get it fixed.
Dr. Yaun says the procedure should be pretty simple (as simple as brain surgery can be, I guess). It should only take about 20 minutes once she begins, and he should spend only one night in the hospital. She said she would not expect him to take more than a couple days for him to feel like himself again. Seems too good to be true, but she assured us that it is not nearly as invasive to add this line as it was to install the shunt. We are looking at scheduling it next week. Please keep him in your prayers.
I'll end on a good note regarding an appointment we had last week... Lucas had a hernia while he was in the NICU and we were told to have it surgically corrected when he was bigger, at 6-months ocrrected age. This would have been in January. We noticed the intestine had not been dropping down the last couple months (as it used to every day when he first came home from the hospital). I asked our pediatrician last month if it could have resolved on its own and he said it is possible, but said it was very unlikely -- and deferred us to the surgeon at Children's. So Lucas was seen last week, and guess what -- it DID resolve on its own! How 'bout that? There's our boy again... I guess they just didn't know who they were dealing with!



