Room With a View

Well, here we are again in our room in the new posh wing of Children's with the view of DC and the Capitol Building. We are always reminded from nurses when we arrive in a room on this side what a beautiful view we have from our window. It is beautiful, but honestly, who notices the view when you are on the neurology floor for something like this? Ugh. But as I write this at 1 pm, we are sitting here waiting for discharge, so that is a good thing!

We arrived in the ER mid-morning yesterday and by noon they had determined it to be a shunt malfunction and three of the four ventricles were enlarged. It makes sense that it was pretty severe pressure because Lucas went downhill in a hurry yesterday. He threw up several times in the morning and by the afternoon was barely moving and crying a lot. I can't describe how hard it was to see him like this. We have heard so many times from the neurosurgery how sick kids can get, but we've never witnessed it this bad until yesterday. I found it very ironic how we were so against surgery and upset about it, but by the time the afternoon rolled around, we were practically begging them to take him to surgery right away. They initially suggested waiting until Tuesday morning so they could make sure they ruled out infection of the spinal fluid, but we asked that they not prolong it because he was in so much pain. The first gram stain of the fluid came back normal, so Dr. Yaun agreed that she could go forward with the surgery. The second day (today) came back clear too... they do three days of cultures.

I have to tell this quick story because we've been so touched by humanity along this journey the last year and a half. After a few hours of being in the ER and watching Lucas decline, crying out every time he was laid on his back (getting xrays were brutal)... it was time to put in the IV (and since his veins are shot from the NICU, this is never fun). I had to leave the room again for Bran to tend to him for this. It seemed to take an eternity, while I listened to him cry outside the room. Then I had to leave the area completely as I just lost it, it all hit me at once... watching my little baby in pain and the reality that we were there again ready to go in for another brain surgery. Why does he have to suffer so much? I started just sobbing in the hallway. The next thing I know, a janitor walks up to me and lays a box of kleenex's on my lap. He doesn't say anything at first, just quietly gives them to me and goes back to clean the floors. Then a minute later he comes back up to me while continuting to mop the floors and says "it is all going to be ok, I just know it," then asks me if it is my son or daughter back there. He keeps telling me it will be ok, that they do wonderful things here. It is probably not the first time he's watched a parent break down outside the ER, but it was so sweet and his kindness is something I will never forget it.

They got him into OR pretty quickly, was in around 2:45 and out at about 5 pm. Most likely, the catheter they put in two weeks ago was clogged by a collapsed cyst, as it wasn't working at all. Since he has scarring and pockets of fluid walled off in the ventricle from meningitis (which we knew about), there was a risk that the cyst could drain, and collapse around the catheter. This caused a back up in three of the ventricles. The fourth (the one with its own catheter on the left that was inserted in March) was still ok.

Ok, this next part is going to be complicated to explain... instead of just putting in another catheter in place of the malfunctioning one, she decided to run a whole new cathether on the outside of his skull (under the skin, between the skin and the skull), then drop the catheter into the right front where all the trouble is, where the original injury occured. If you remember from previous posts, the reason she talked of putting in second shunt system on the right was because it is dangerous to run a cathether from the back left where the valve is, all the way up to the right front, crossing midline. It could damage healthy brain tissue and carries the risk of bleeding. So, she decided to run it on the outside, then back down into the brain. He has two incisions this time, one the back of his head (made larger this time), and one on the top/front of his head (once healed it they will both be covered by hair). So he has a small tube running under the skin from the back, up and over to the front region. Unfortunately this required a hole in his skull in the front to insert the catheter back into the ventricle, but the bone will safely grow around it and will not pinch the tubing. Who knew. Lets hope this works and that it is the last time (at least for a few years)! She said she feels better this time, and since the three ventricles all balooned when the catheter stopped working, it is and indicator that the three are communicating with each other, which is what we want. If this is true, then there may not be a need to go to Plan B, to clear out the scarring.

The good news is he is doing really well today. He woke up from the surgery in pretty good spirits yesterday (not near as much crying as the last two times). He even gave Gran a raspberry when he was first coming around (just one of the bad things I've been teaching him lately... he now sticks out his tongue and blows raspberries on command). And the sweetest thing happened while he was in recovery... here he was 2 hours post-op, and he held his bottle and self-fed for the first time ever! I think he just needed a small bottle that he could grasp with one hand to show us this new skill (since he doesn't like to use his left hand to help, he would never hold his bottle at home with two hands). He just keeps on surprising us! See the picture below.

He had quite a bit of crying overnight and not a lot of sleep, but we're off to a good start this morning. Dr. Yaun said his CT looked good this morning and we're getting ready to go home in the next couple of hours. Please pray for a quick recovery and for it to be the last, and above all, no infection from the surgery. That is always the biggest risk. As always, thank you to all our good friends and family for your support the last couple days. We love you.

PS, we LOVE Dr. Yaun. She is truly an angel. We feel lucky to have her.

Holding his bottle for the first time...

On Our Way

On our way to the ER, Lucas was pretty bad this morning, will update later today...

Update

I had planned on updating the site this weekend by saying "all good"... but now I'm not so sure. We had a pretty good week of recovery, some crying the first few days home, but every day it got better and he's been very happy. Now this weekend, there's definitely something wrong. He's throwing up again (last night and this morning), is lethargic, sleeping more than usual, and his eye is dropping a lot again. The old question remains... is it just a virus or is it the shunt? Of course, we're always suspicious of the shunt and pressure, if it weren't for his eye dropping, we wouldn't be as bothered. And, with Dr. Yaun saying we would "try" this revision first before going to Plan B to clear out the scarring, we're very on edge. We even contemplated going to the ER tonight when he was very limp all evening and started crying for no reason, but he's sleeping peacefully now and we decided to wait until morning before deciding what to do.

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On a good note, we saw the pediatrician this week, and all is clear with the ear infection. He said he was very pleased with how he looked and his lungs sound clear again. At least we can put that one behind us.

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There are a lot of changes going on with his therapies, but I don't have a lot of time to write much detail. Here's a quick summary... after increasing his therapies from the county to once a week for each (OT, PT, VT), we are now looking into private therapy multiple times a week to increase his motor skill focus. It is going to cost us quite a bit, but we must try some new things. He has fallen very behind and it is becoming a lot more clear lately (as he is not yet sitting up, not even close to crawling, etc.) We have a lot of things we can point to for being behind... surgeries, illnesses, introduction of siezure meds, vision impairment, and limited use of his left arm... all of these compound to create some major setbacks, there is no doubt about that. But, increasing therapies should help, so we are currently looking into a number of options.

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We also requested a new OT from the Early Intervention program, after deciding that she is not the best fit for us. She has been very negative lately, and when you're dealing with all that we are faced with, we need the most optimistic and positive people around us. Our PT and VT are awesome, but the OT is missing some things that we feel are important for his success, and quite frankly, my sanity in dealing with her once a week! I spoke with the Executive Director last week and we should be introduced to a new one this week. I am told she will be from the team that has more neurological experience and deals with more medically complicated children.

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Lastly, I am so excited about an appointment I arranged for him last week (for Feb 09). Dr. Christine Roman is a well-known expert on CVI (cortical vision impairment). She is an educator, author, and lecturer, and is Director and Assistant Professor of the Program in Visual Impairment at Marshall University. Our vision therapist studies her, and often references her theories, writings, etc. From day one of meeting Beverly (our VT), all I've heard about is Dr. Roman. I just learned that she is in Philadelphia (3 hours away), and that she still sees children. I got to speak to Dr. Roman last week, and she is going to see Lucas!! I am part of a network of other parents with kids with CVI, and have heard nothing but great things about her and how much she's helped them. Some families have driven from several states away just to see her. We can't wait! http://www.wpahs.org/news/releases/index.cfm?mode=view&article=74

I had to end this update on a good note, as I hate to just report bad news. But, we are worried and absolutely sick about the thought of taking Lucas back into Children's for another surgery. We'll see what the next day brings, and I'll try to do better at getting an update up more timely.

Here's a few pics from last weekend, we didn't get quite as many smiles this weekend. :-(

Cutie in his new Rocky & Bullwinkle PJ's

Such a big kid now!

Sitting with Mommy
What are YOU looking at?Lucas could care less that he was next to a miniature pony,

but Mom thought it was cute!

Its Over!

For those that don't know, we ended up in surgery somewhat urgently this week to correct the shunt. Lucas started throwing up on Sunday, and it occured again on Monday and Tuesday morning. This is one of the symptoms to look for with a shunt malfunction... first the sunsetting eyes, then change in appetite, crying from head pain, lethargy, excessive sleep, and throwing up. We've been on alert for these things the last few weeks wondering if we'd make it to November 5. He was tough to diagnose because even though he was sick these days, he would only do it in the morning, then better throughout the day. We didn't know if it was something else, especially since he was just getting over being sick. By Tuesday I knew something was up, as he was more lethargic and crying hard for no obvious reason, which is just not him. He also wasn't interested in eating. I called his neurosurgeon Tuesday morning and asked her if this "morning sickness" could be correlated, and she said yes, that sometimes kids will feel the effect of the pressure more in the morning, then appear fine the rest of the day (which was totally him). She told me to bring him into the ER to get a CT scan, and that she would tentatively be holding a spot for him late afternoon for surgery.

The CT confirmed the pressure had gotten worse from the scan three weeks ago on the right and that the pressure was now crossing midline and pushing/condensing the left side of the brain. This new picture made her suspicious of a block in the tubing, rather than scar tissue being the culprit (as she thought was the reason a few weeks ago). She felt that the catheter had moved too far to the side of the ventricle, which could make it less effective. The other difference in this scan, was now that the fluid area was larger and crossed over to the left side, it would actually make it easier for her now to extend a new catheter from the shunt valve on the left side of his head. This must sound so confusing... but remember, the shunt valve is physically located on the back left side of his head, and a few weeks ago she said if she had to take the catheter from left all the way over to the right front, she felt it carried too much risk of a brain bleed. *There's an explanation and picture of a shunt in a previous posting called "hydrocephalus" if this makes no sense.

So... we ended up in surgery Tuesday evening around 11 pm. She was able to pull out the old catheter, and feed the new tubing through the existing path (so there was no need to create another hole in the brain matter). She put this new tubing deeper into the ventricle and more in the center of the ventricle, which should be in a better position for draining. She confirmed that when she pulled the old one out, there were only a few drops of fluid and that it was not working. Dr. Yaun told me before surgery that her one worry before operating, was that when tubing has been in for awhile, it can sometimes be scarred over and you run the risk of tearing tissue and bleeding when its pulled out. Luckily, it was not attached at all and she said it pulled out immediately.

As scary as all this was, at least its over!!! I think I was more scared of this surgery than any of the others. As I've said before, sometimes it is harder to be in limbo and worry about all the outcomes, than to just barrel through it. That's just what we did on Tuesday. It was such a relief to see her come around the corner and tell me that it was over, that he was ok, and that it all went well. She said she feels really good about the way this was repaired. There is still a chance that there is scar tissue in the ventricle from meningitis that will keep the shunt from being effective and may require another surgery to correct, but we will try this first. If there is scar tissue, we have another option (Plan B) before putting in a second shunt, which is to go in through the top of his head and try to break up the scar tissue. We would try that before putting in a second shunt system (which would be Plan C). We are SO relieved we didn't have to put in a second shunt!! Actually, a relief that we didn't have to do either "B" or "C". We got out of this with the least invasive of the three options.

I should say that he was pretty darn happy even through all of the pressure... I heard it more this week than ever from the constant stream of people at the hospital, "awh, he's just so cute!" (as he smiled constantly at nurses and doctors on Tuesday when we waited all those hours for surgery). When Dr. Yaun came in to show us his CT scan and tell us she wanted to operate right away, he just sat there and giggled at her, and shook his head "no" every time she'd ask him a question. She was cracking up. I need to get it on video so you can see... he now shakes his head "no" at everyone he sees and gives a grin, because he wants to get a reaction. It is a beautiful thing to watch him do things to "see" a reaction on people's faces.

Not that this was a walk in the park by any stretch, there was a lot of crying that was just heart breaking. There's nothing worse than seeing his face and hearing his cry when he wakes up from surgery. Since he's not a cryer, hearing him scream out from pain or from being scared hurts me to the core. Yesterday he would startle really easily from the slightest loud noise, then start crying. It got to the point last night, that I couldn't lay him down for even a few minutes or he would really start screaming. Dr. Yaun said if they've been living and adapting to the pressure for a long time, just the act of removing the pressure and the sudden shift can cause pain. Other than for naps, he wanted to sit in my lap for most of the day. I guess that's to be expected, all kids just want their mommies when they are feeling bad, don't they?

I want to thank Danny (Bran's Dad) for being there for me and Lucas through the surgery. This all happened while Bran was stuck in California on business and he couldn't make it back in time for the surgery (very bad timing for a shunt failure). And Saundra was away on business too. But Danny was there all night by our side, waiting all those hours, walking us to the OR, and was still there when we could finally see him in recovery at 1 am. Danny said it was the first time he's ever heard him cry and so sad to hear (... I told you he never cries)! GranDan and Lucas have something special, Lucas really lights up when he sees him (and so does GranDan). I was glad he was there. My friend Courtney was also there for me Tuesday night. She has an amazing little 25 weeker too, about to turn a year old. She says our little ones are "going to have each other's back one day." :-) Unfortunately, she knows Children's Hospital about as well as I do, and we share some of the same doctors. I was so touched that the minute I told her we were heading to the ER, and probably the OR... her next message was, "What floor are you on, I'll be there." It was nice to get my mind off of things, as we waited about six hours for an operating room. I know our families would have been right there too, if they weren't out of state.

What a difference a day makes though... I'm happy to report he's getting back to himself today (Thursday). We were discharged around noon today and he's been chatty, smiling, and starting to eat again. Relieving the pressure that he's been living with for several weeks (or months) should be great for him after we get through a few days of recovery. I can already see a difference in his eye, and I can't wait to see if this makes his vision improve on that side.

Sorry for the long post, a lot has happened. I'll update everyone in a few days just to let you know how its going.

Just before discharge, feeling much better...

Much Better!

Our little punkin!

We're finally on the upswing from the nasty cold and lung scare. He finally stopped wheezing a couple days ago and the pulmonologist saw Lucas this morning and said she was very happy with the way his lungs sounded for as bad as they were last week. She said she has already admitted 15 patients into the hospital in the last two weeks for RSV, which season doesn't officially start until the end of October. Wow. The first thing she asked me this morning was whether the pediatrician swabbed Lucas for RSV last week when he was coughing and wheezing so much, and when I said "no," she looked surprised (which got me worried that the appointment wasn't going to end well. But when she listened to him, she said she felt that RSV and Pnemonia could be ruled out for now. Very good news!!

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And guess what... we get to call the home health company and tell them to come pick up the dreaded apnea monitor. Yeah!! She also wants to repeat his sleep study after we figure out when/if he will have surgery, and wants to do it three weeks after he has surgery, when he's fully recovered. She said there is a chance that with time, he may have outgrown the need for oxygen for his apnea and wants to check to see if he absolutely needs it. We know he will still need his tonsils out in the spring, but can he live without the extra oxygen until then? That will be sooooo nice. Also, since he's getting older and so much more squirmy in his crib, they feel it is a safety concern, as well. Since he takes his oxygen off every morning, they don't want the risk of him getting tangled in it if it isn't absolutely necessary. That has worried us a lot, as he sometimes has it wrapped around his shoulder a couple times. I wish we could do the sleep study tomorrow and figure this one out, but with all the pressure building in his head right now, it would be useless to do it now. So we'll wait with that too, I guess.

We're hanging in there with the pressure for now, I can tell his eye is really dropping. You can't tell from these pictures because I just picked the ones where his eye is up. I just don't know if we'll make it to November. He doesn't seem to be in too much discomfort yet, but that could change at any time. I'll keep everyone posted.

Here's some pictures from this past weekend...

A beautiful day and a snuggle

The kids at the pumpkin patch

With Dad on the hay ride

What's so funny?

There's a great story behind this elephant. Nicholas bought this for him last summer while Lucas was in the NICU, with his own money. Nicholas was riding his bike and stopped by a neighbor's yard sale, he ran home and asked Dad if he could take money out of his bank to get something for Lucas. Bran didn't know what it was, but said sure, if you want to. So, Nicholas took $2 from his bank and carried this elephant home for Lucas, one of his first toys. So incredibly sweet, it brings tears just thinking about that day. For the past year, Nicholas has been very protective of it, if the girls ever try to play with it, he tells them, "get off, that it is Lucas' toy." We tried Lucas out on it for the first time this weekend!

Check me out, I can't quite sit up on my own yet, but I'll get there!

Mommy making me laugh

Status

I apologize that it is Wednesday and our appointment was on Monday, I know everyone has been worried. In between running to doctor's appointments and taking care of Lucas, I'm trying to keep up with a sometimes demanding job. Clients don't stop asking for things, and meetings still need prepped for, even though things are busy at home! This week has been especially challenging to find free time with him sick and appointments... as soon as I put him to bed, I spend the next few hours working to catch up before getting to bed, exhausted!

I don't know much after Monday's appointment, unfortunately. The ophthamologist confirmed pressure (as we already knew), but said she couldn't really see whether it was so much that an urgent surgery was necessary. She felt a little at a loss because it had been so many months since seeing her (my fault), and couldn't really compare today's exam with past exams, except from January. She was kind of put off that the neurologist didn't call her or anyone from her department to do a bedside exam of him while he was in the hospital in March, when his one eye became dilated. She was very concerned about the dilation. Oh well, that's in the past now! She wants to see him back in 4 weeks (one week before the MRI) to see what has changed. So we'll wait... until 11/5, unless he goes downhill between now and then. That's tough to do, when you know there are negative things happening inside his head. And since he obviously has a HIGH tolerance for pain, he doesn't tell us when he's uncomfortable until it becomes unbearable. I read a website the other day of a girl with hydrocephalus, now in high school... and to hear how she describes the pain when a shunt malfunctions and pressure builds is very distressing. I can't stand thinking of him in pain. I am convinced that his eye is dropping more lately, so maybe we won't make it until November. Its hard when you see him every day to notice subtle changes like this. I asked Mirna (our nanny) what she thought, and she agreed that it was pushing downward much more recently.

So... how about some positive news? She said she thinks he can see out of the right eye, and just the right visual field may be missing. Its tough to say when they're this little, but promising to know he may have "some" vision in that eye. After all, we're just shooting for functional right now -- not stellar. It was also nice to hear her say good things about his overall response, she said he made eye contact and smiled (and there was absolutely no visual response in her records from January). She also said that although she agrees that pressure is making his eye move in the wrong direction, that it may also be muscular... and that can be corrected. The interesting thing is, she thinks the left eye is the one with the problem (the one we thought was normal). She said it is not moving over far enough, and it makes the right eye "appear" to be the one that is facing outward. This is another hard thing to explain without a pen and paper, or my hands.

Monday was an eventful day not because of the eye doctor, we ended up back in the pediatrician's office. Lucas started coughing through the night Sunday and non-stop Monday morning, and wheezing so bad I could hear him struggling to get a breath from the back seat of my car on the way home from the eye doctor. His chest was contracting in, like it was in the NICU when his lungs were very stressed. The pediatrician wanted him in right away, and it turns out the antibiotics are not working on the ear infection (which has gotten much worse in his ears, he said). Now it has spread to his lungs, and with a baby with scarred lung tissue and chronic lung disease (known as BPD), this is very serious, as distress to a baby with BPD can impact other systems (heart and kidneys), as well as develop into a more serious illness. He gave us a stronger antibiotic and we started doing nebulizer treatments every hour on Monday afternoon, and now back to every four hours for the next few days. That seemed to help, but he'd start wheezing again about 10 minutes after the treatment. We are supposed to watch him very closely the next couple of days, and if the wheezing doesn't stop or worsens, we need to go back in for further evaluation. So far it seems to have stayed the same, but at least not worsened. They worry a lot about RSV and pnemonia, so please keep this little guy in your prayers, once again. I just read about another child in my preemie group who just spent the last three days in the hospital from pnemonia... that started from a common cold! Ugh. And its not even cold and flu season yet! I also heard the pulmonary nurse said she's surprised at how many cases she's already seen of RSV in DC (and vaccinations do not start until October, when the season usually starts). I'm reminded again this week of the insensitive comment said to Bran a couple months ago of "when are you going to think of anyone but yourself and Lucas?" when trying to keep the kids separated from one with a fever and illness. This is exactly why!

We're just holding for now and will see what transpires. Thank you to everyone that sent emails or called us this week, after learning the news of his pending surgery... we know he's in a lot of people's hearts. It really means a lot.

PS, he's still all smiles through all of this. My little hero.