New Shunt

I was one day off in counting, I didn't realize you could count the first day they took the culture, that made yesterday day #7 without any growing bacteria. Surgery for a new shunt was scheduled for noon today but around 10am they came in and said that O.R. was ready for him. In the days we've been here he has gotten to know these halls as well as we have. When we leave our room he can find it again. When we go for walks outside he knows how to get us back to the elevators and then back to our room. And when we turn down certain hallways he knows where we are going. This morning he wasn't happy about the turns we made. Surgery went well and the new shunt was placed a little higher than the last. They made a new incision instead of opening up the old again. I met him in recovery and he was not happy. He finally settled down and we were able to go back to our room. He was pretty ill again at that time and after a call to the NS to approve some morphine he settled down and wanted to play. Daddy was here by then and brought a present with him. We are in such trouble when we get home, he's been getting presents every day it seems. He appears to be pretty sore and he doesn't want to turn his head to the right, that is where the shunt is and the tube that goes from his shunt to his abdomen. This was a little puffy right after surgery but has since gone down. I think we are just going to keep him medicated tonight and see how he feels tomorrow. We're praying for a good day.

Pics to Share

It's been a couple of days since our last post and I'm happy to say that they've been good days. Not much to report. We spend the days playing in the room, in the playroom or playing fuse ball. Jackson has been his old self again. At least until one of the Dr.s or nurses come in, but we really can't blame him for that. And the best news is that we have had 4 days with negative cultures, 3 more to go.

I finally went home for a couple of hours Sat afternoon. It was the first time since we've been here and it felt wonderful! Bubba and I hung out for quite a while and then I decided to tackle the fish tank. It had been neglected since I'd been gone and one of the fish lost an eye, I was thankful that I didn't find it while cleaning.

Brandon went home a little earlier tonight to get some things done and to get some sleep. While he was there he downloaded the pictures we took up here and sent a few for me to post:

The first one is daddy and Jackson with the ICP monitor, I think the first one. The second is after the cranial expansion. #3 is Jackson and mommy, this is before the expansion when the first monitor fell out. #4 is daddy and Jackson playing fuse ball or "put the ball in the hole" and #5 is daddy and Jackson playing trains in the playroom. This after they externalized it from the chest. As you can see he is looking and feeling much better. (You should be able to enlarge them by clicking on them).

Day 30

So today makes #30! I can honestly say I never expected to be here this long.

Anyway, surgery went fine. Jackson was back up and playing with us last evening. Today was a good day. The PICC line looks good and the IV came out. He now has both of his hands free to play. We did a lot of playing today and when daddy got here this evening we went for a walk to see the tractors and then played with balls in the playroom. He was up and walking around, still a little wobbly but better. He was throwing and catching balls and didn't want to go back to our room. We finally got him back here around 9pm and now he is fast asleep. The culture they took yesterday from surgery is still negative, keep your fingers crossed it stays that way. That's all for today. Good Night!

Another Surgery

Monday and Tuesday were great days and very eventful, in a good way. Monday the fire alarms went off and while we were outside taking a walk the fire trucks came. Jackson was able to go right up to them and touch them and the firemen even opened the doors so he could peek inside. After that we continued our walk to see the construction that is going on. Jackson loves to watch the tractors and big trucks on the site. This is beginning to be a daily walk and beats looking at the walls of the hospital room.

When we got back to the floor there where some SoCon football players visiting the patients and Jackson got his picture taken with them. It was published in the Greenville News on Tuesday. You can see the picture by going to http://www.greenvilleonline.com/ and then in the search box type in SoCon Football. It will pull up a few recent articles, click on "SoCon coaches gather for football rouser". This will pull up the article and the picture. You can zoom in on the picture by clicking on it. They butchered my name and our last name (Bennett), but it was a cute picture of Jackson. Another photographer took a picture of the Appalachian State player sitting in bed with Jackson for a NC news paper. He said he'd get a copy of that picture back to the hospital for us. The rest of day consisted of playing in the playroom and playing fuse ball. He loves to play fuse ball!

Tuesday was much of the same but without the fire trucks and the football players. We went for our walk to see the tractors and he was able to see a crane and a bulldozer, this was exciting stuff! We sat for quite awhile watching them and then went back to the room for an early nap.

While he was sleeping the infectious disease Dr. came in to take a daily sample of spinal fluid, they will take samples everyday and do tests on them. We need to have a negative culture for 7-10 days before they will put in a new shunt system and we can go home. She called a few hours later to say that the sample she took was already showing 4+ positives. Not what we want! So back to surgery he goes. This time they will remove the existing infected system and externalize it. He will have the tube draining from the top of his head, where the ICP monitors were (this is what they did a few years ago when he had an infection). We thought this might happen but were hoping it wouldn't. I guess it's better that it happened now instead of this weekend or next week. While they have him under they are going to put in a PIC line, this lasts longer than IV's and is more convenient. I took him down to the O.R. about 15 mins ago and just got a call that they are about finished. They are putting in the PIC line and will call me again when it's complete and I'll meet him in recovery. I'll try to post again tomorrow. Until then please continue to keep him in your prayers. We know that God is in control and Jackson is one lucky little boy to have so many people who care for him.

New Room

Hello! We are out of the PICU and into a regular room (#5508). Hopefully this is where we will spend the rest of our time here. Jackson had a great weekend and has been feeling well since they externalized the tube end of the shunt on Friday. We've been playing a lot and eating even more. I think he's trying to make up for the last few weeks when he wasn't very hungry. Not much else to report the weekends are usually quiet.

We're Still Here

Sorry it's been a few days since our last post but things were happening kinda fast and we were waiting for break to report. So I'll recap the last couple of days.

Thursday was even better than Wednesday. Jackson slept great Wed night, only waking once. Then again around 6:30am and we noticed that the CSF was still leaking and had increased a bit. He was in a good mood and ate a LOT for breakfast, I wasn't sure where he was putting it all. After that he wanted to go to the playroom. While we were there we had a consult with PT and speech (since he's been in here so long they want to make sure that he is functioning age appropriately). After awhile he started to get a little tired and wanted to go back to the room. It doesn't take much these days.

When we got to the room the therapy dog was here to play. She was a little Yorkie, named Gracie, and Jackson LOVED her! He had such a big smile on his face when she would kiss him. He sat up with a little help and pet her and gave her scooby snacks. It was too cute and well needed!

There was a rumor that we might get to go home but only if the fluid stopped leaking. So when Gracie left we tried to take a nap and while he was sleeping the nurse attempted to glue the leak. Unfortunately Jackson was not having it and the more she tried to glue the more he cried and that produced more CSF which made it leak more. After two things of glue we gave up on that idea and decided we would wait for the NS who was suppose to come by later that day.

Jackson was not sleepy or was afraid to go to sleep after that so we walked Nana and Papa outside and said goodbye to them then went to the playroom again. It was a little crowded and Jackson didn't want much to do with the other kids so we went for another walk to see the fountain in the hospital and then went back outside. We found some construction going on and he was able to watch some tractors and see a dump truck, that made his day! All that excitement and being outside in the heat quickly took its toll and he wanted to go back to our room. He fell asleep and we waited to see if we would be able to go home.

When the NS finally came by to look at the leak he said he would have to go to surgery to repair it, which meant we weren't going home. Surgery #5 (this visit) was at about 10pm Thurs night and they filled in the burr hole from the ICP monitor and then stitched it up. We finally got back to the room and settled down around midnight. Around 2am he started to pull out his hair again and was getting pretty ill. We gave him some Lortab and a little morphine to settle him.

A little after 6am the NS came in to check him and ordered another CT. He was really out of it and was hardly opening his eyes or talking. The CT didn't show any difference but his ventricles are rigid and don't show if there is an increase in pressure. The NS then tapped his shunt by inserting a needle in the top of the valve and removed fluid that way. When he put the needle in fluid came out right away and he said that there definitely was a lot of pressure. Once he removed the fluid Jackson was a little more alert and was talking a little. The fluid that he took out he sent to the lab to check for infection. We didn't have the time (2-3 days) to wait for a culture but they did other tests and he said the cell count in the fluid showed that there was an indeed an infection.

Surgery #6 was last night around 7pm and they externalized the tube that runs into his abdomen. So now there is a tube coming out of his chest that drains into a bag. They also shaved his head, per our request. He looks more like daddy now. :) Since surgery he has been in a good mood and very alert. At midnight last night he had a craving for goldfish crackers and of course at that time we couldn't find any so he had to settle for some chef boyardee mac'n'cheese. He ate almost the whole container and then wanted to play with his toys. When he did finally fall asleep he slept well and woke up this morning wanting more goldfish. Our nurse found some while we sleeping last night so he was in luck and he ate the entire bag. Then our breakfast came and he ate almost all of the eggs and two pieces of sausage. He has been in a good mood this morning, smiling, and laughing with daddy. He has asked to go to the playroom already this morning and his personality is back. With the infection that means that we'll be here another 7-14 days at least. We'll have more of an idea when the infectious disease Dr. comes by. Well that's the latest and greatest.

Finally A Good Day

Lets see so much to post...Yesterday the ICP monitor came out and he was fine for a few hours after that. He talked a bit and ate some french fries and was in a pretty good mood. Then in the early evening he started to get ill and he threw up all the fries. After that he started literally pulling out his hair. We don't know why or what was going on but he would be fine for about 5 mins and then just scream and try to pull his hair out. We had to hold down his arms until he calmed down and fell sleep, then the next one would hit. At one point he scratched one of the scabs from the incision and it started bleeding and then leaking CSF (spinal fluid) so we had to wrap his head. Needless to say it was a very, very long night.


Today though turned out to be a really good day. We started with a CT of his head and tummy. Last night he kept saying that his tummy hurt. The head scans looked fine and we haven't heard the results of the tummy yet, I guess no news is good news on that. We had about 30 mins in between the two scans and were able to go outside for awhile. That was a real treat and felt great. When we got back to the room Jackson was in a good mood so we played with his stufties and pretended to feed them bananas. We laughed at Dora saying "banana pants" and he did his monkey dance (laying down of course). For lunch we ordered a grilled cheese sandwich and had a couple of little cookies. Then he had a bath, his first in three weeks! After all that excitement we both took a nap. For dinner he ate dinosaurs with meat balls and took a few bites of pizza. Then we went for a walk to see the fish and to play in the playroom. He is very wobbly when tries to walk and has lost a lot of weight since our stay (he had nothing extra to begin with). We'll have a lot to work on before he's back to his old self again but it's a start and he is beginning to act like our Jackson again. When we got back to the room he wanted to eat more pizza and colored a few pictures, daddy was able to lay in bed with him for this. He was pretty tired after his eventful day and is already sleeping, hopefully for awhile. Tomorrow they are going to bring up a therapy dog and we are meeting with PT and OT. I think we'll try to get outside again and back to the playroom. Today was good day! :)

Day number 20

So today marks day 20. He still has the ICP monitor in his head but doc said he's gonna take it out tues or wed at the latest. Jackson was not a happy camper yesterday so they did another CT to look at things, but today as been better. He's now having problems going #2, they think its from all the meds, they can back you up. He gets really ill when he's trying to go. The pressure from him pushing actually can increase the pressure in his brain since the shunt tubing empties out into your abdomen. (There's always something) By looking at the scan from yesterday and watching the pressures the last couple days the doc thinks all is going good with his shunt, pressures, brain, skull, etc. but Jackson is still not quite himself. We are giving him some laxatives so maybe this may help, we hope so, he keeps complaining that his tummy hurts and actually cries when he tries to push. We are also trying not to give him any pain meds (morphine or lortabs) since it just knocks him out and makes him want to lay around. He has become very gunshy of people since our stay. I can't blame him, all the new people he sees in here do bad things to him. We are hoping that once we get this monitor taken out of his head, let the laxatives kick in and get some of these wires off we can get him out of this room for a while and into the playroom. After all he's been laying on his back for 20 days now. Maybe getting up and about will cheer him up.

Back in the ICU

So they put the ICP monitor back in to check the pressure and drain excess fluid if the pressure gets to high. Once the Dr. inserted it in surgery he said the pressure was very high, so he drained some fluid out. This hopefully explains why Jackson was so ill this week. The Dr. also was able to adjust the setting on the shunt. By adjusting the setting and monitoring the pressure we can hopefully find the right setting that makes Jackson comfortable. He slept pretty good last night and today he has been better than any other day this week. He actually ate and drank some things today, which he had not done all week. His pressures are looking good and they have not had to drain anymore fluid after surgery (this is a good sign). He still gets kind of cranky but we think he is just sore from the surgerys and nothing major. He's not getting near the pain meds that he was so hopefully we are turning the corner.

Another Step Back

I wish that I had some good news to post but I don't. Yesterday when he wasn't sleeping from the meds he was ill (upset). He had a brief hour or so period last night when he wanted us to read to him and was actually acting a bit like himself, but it didn't last long. Overnight and today have been the same as yesterday. We've taken him off the morphine and he is on Lortab, which makes him sleepy but he's still not feeling any better and still doesn't want to eat or drink.

The NS ordered a CT scan today and it showed that his ventricles were a little bigger than before the surgery, but we don't know exactly what that means. If there is more pressure or just that the surgery went well. We will be bringing Jackson down for yet another surgery in the next hour or as soon as they fit us in. They will be putting in another ICP monitor to watch the CSF pressure. Brandon is much better at explaining how things work but basically they will screw a bolt into the top of his head. One side of the bolt has a catheter that will be placed in the ventricle, the other side has valve and a tube that drains into a bag. When the pressure gets high or above a certain # they will open the valve and drain the fluid down to a lower or normal pressure #. This is what he had done on day 2 of our stay here. The surgery only takes about 20 mins and after that we will be moved back to the PICU. I'm guessing that they will watch that pressure this weekend and have a plan on Mon. At least we hope so. There is a greater risk of infection each time they have to go in and do something and this will be the fourth time since we've been here that they've gone in. Please pray that that doesn't happen.

Brandon and I are doing okay. We just want Jackson healthy again so we can all go home. Thanks for all your love and support and just keep praying for Jackson to get well.

Quiet Day, Not So Quiet Night

Yesterday was pretty quiet for a change. We watched Dora, played a little with cars and tractors and his puppy and moose. I had the bed elevated to help him sit up and hopefully help pull some of the swelling down away from his face.

We had a visit from our neighbor Nancy and Papa came up later with daddy. Jackson enjoyed watching the two of them throw a ball around the room and he even tried to throw it a couple of times. His appetite still isn't back, he ate almost 2 Cheetos but didn't want anything more.

Around 5pm he started to get a little upset and again at 6pm so we called for some morphine. That seemed to help and he watched Dora some more and talked with daddy and I a little. He got a good night call from Suzanne and Christopher and said a couple of words to them then finally fell asleep. Unfortunately that didn't last long. He was up at 10pm and then up and down screaming most of the night. I felt like I was always calling for pain meds. This morning I called for some "pain medication for Jackson" and they thought I said "I need help to the bathroom" so they sent someone to help one of us to the bathroom. The nurse just laughed when I told what we really needed.

The NS was in already this morning and said that we'll take him off the morphine and give him some oral Lortab instead, it should last longer than the morphine, and some anti-inflammatory meds for the swelling. I'm praying that he won't gag or throw this up. They are also planning to change the dressing on this head today, this will be our first look at it since surgery.

Right now he is resting peacefully and I am going to try to get a little as well.

New Room

We took a little break from posting last night and were finally able to get some much needed sleep.

The night after surgery was a LONG one. Jackson was in and out from the morphine and just couldn't seem to get comfortable. Of course they had to come in and get his vitals more than usual and that didn't help the situation at all. Then he kicked his IV out and they had to start yet another and for some reason they are never able to get it on the first stick.

Papa came up yesterday afternoon and that perked him up a bit. We got a few smiles and they played with his cars a little. I was actually able to get out of bed for awhile because he wanted Papa to lay with him. This is something that daddy isn't able to do yet, so that was pretty big.

He still doesn't have an appetite but is drinking a little. His head is pretty swollen from the surgery and is still bandaged up. He had some "ooze" the first night but we haven't noticed any more since then. He doesn't want to sit up or anything so that is something we are going to work on today. He is going longer periods without any morphine and is still getting the Tylenol suppositories, which he HATES.

Last evening they moved us out of the PICU and into a normal room (#6508). It's a little bigger, quieter and we have a bathroom! Brandon has a pullout that he can actually fit on and said is pretty comfy. I think we're suppose to be able to see the helicopter's land and take off from here and there is a playroom down the hall. Hopefully that will encourage him to get up a little more. It's one step closer to going home.

Surgery is complete

Cheri is the blogger in the family but her and Jackson are resting in bed so I'm going to try my hand at it. Surgery got started late and took about 3 hrs. The Neurosurgeon said everything went well and as expected. We are back in the same room in the pediatric ICU. The first 24hrs will be the most painful, but he is on a heavy dose of morphine every 2 hrs so he is in and out. Even though his eyes are closed he must still be listening because he knows when Tom and Jerry goes off so we have to restart the DVD over and over again. I'll try to explain what they did and why. Most of you already know the story but I'll start from the beginning.

Because Jackson was born 11 weeks early he had a hemorrhage in his brain. (the brain is not ready to go thru the trauma of birth this early and is too weak) The blood clot developed in a pathway where spinal fluid is drained from the middle of your brain (ventricles) thru your spinal cord. This is called hydrocephalus or water on the brain. This is not uncommon in premature births as early as Jackson and older adults can develop it after strokes or severe head trauma from accidents. So Jackson had to have a shunt inserted into the ventricles (middle of the brain) to drain the fluid. The shunt consists of a catheter inserted into the brain and comes out behind his right ear where it is hooked up to a valve just underneath the scalp. Then there is tubing hooked up from the valve and runs down the inside of his right side into his abdominal area where the fluid is absorbed. (Am I boring anyone yet)

Now, since the valves drain at a steady rate there is no pressure on the brain to grow outward so there is no pressure on his skull to expand which caused it to fuse early in several areas. In normal people, the fluid in your brain is regulated naturally thru your body. As you get older the ventricles get bigger which causes your brain to expand which causes your head to grow. The brain and head in people continue to grow until they are about 18 years old.

Because Jackson's is fused, his brain is basically trying to grow but has nowhere to go. The Dr. said he could tell by the scans that there is areas on the inside of his skull that are indented from his brain growing into it. All this causes major pressure in the head which causes Jackson to get very, very sick. We've been dealing with this issue since last August.

So what he did today was make an incision from ear to ear over the top of the head and peel back the scalp so he could see the skull. He cut out the top half of the skull which was fused and broke it into several pcs so that the brain and skull could continue to grow. (I hope I'm not grossing anyone out) He put the pcs back leaving 1/4 to 1 inch gaps so that things can expand without the pressure, like normal people.

Hopefully this fixes the problem, I guess only time will tell. There is no doubt Jackson will need more surgeries down the road, but right now we could use going years without one. He's not even three yet and has had at least 10 surgeries. He's a tough kid.

Surgery

Surgery is scheduled for 9am tomorrow. Please keep him in your prayers.

Today was pretty quiet. Jackson has been on morphine since last night and has been sleeping quite a bit. When he's not sleeping he wants to watch Mickey saves Santa. It's kind of funny because he seems to wake up whenever we change the channel or when the movie is over and wants to watch it again. Of course we can't tell him no, so we've watched it ALL day long.

Brandon has gone to pick up Papa Barnett who has flown in to help us out this week (we'll miss you Nana). They are going home to get a good nights rest and give Bubba some much needed loving and will be back here tomorrow before surgery. The surgery should take about 2-3 hours and after that he'll be moved back to the children's area and out of PICU. It'll be nice to have a real room again and hopefully be that much closer to going home.

Thank you all for keeping us in your thoughts and prayers. Jackson has been through SO much and I hope after this it is a very long time before he has to come back. Thanks again for all your support. We love you all!

Day 10

What started out as a pretty normal day ended not so normal;

Last night was pretty good. Jackson woke only a couple of times, that is until 4am when he decided he wanted to watch Tom & Jerry. He finally fell back asleep and woke again around 7:30. Like I said we started the day pretty normal, we played with cars and tractors, did puzzles, colored and watched Mickey Mouse. It was a nice change from Dora and he seemed to be in a pretty good mood. He even ate a few Cheetos, his favorite! The only problem we noticed was that the bolt seemed to be loose again and looked like it had turned.

The resident Dr came in early afternoon and decided to close off the valve to the ICP monitor because he was doing so well and wasn't draining a whole lot of CSF. The NS came in around 3pm and we went over our concerns and he suggested that we do surgery early next week. We were pretty much expecting that from earlier conversations in the week with other Dr's but since he's the expert at this everyone wanted to wait for him to make a decision.

Jackson has Craniosynostosis, which is basically when the bones in your skull prematurely fuse together and the brain isn't able to grow like is should. Instead the brain has nowhere to grow but in and then the ventricles become small and slit like. When that happens the fluid can build up and cause pressure which is what was causing Jackson to have his "episodes". To fix this they need to do a cranial expansion or remodel his skull. The NS said if we don't do it now we'd be back in another 6-12 months discussing the same thing. Jackson will have to stay for about 3-4 days after the surgery before he is released to go home.

After that our day went back to normal for awhile and we played and took a nap. Daddy went out and bought new Dora and Tom & Jerry videos, thank goodness! When he woke from his nap he was a little more irritable and his pressure was up. After a couple of hours with higher than normal pressure they drained it and he was a little better.

Then when the night nurse came in to do vitals she touched the loose bolt and about sent Jackson through the roof. She then decided that she would wrap it and to make a long story short the bolt came out again but this time so did the catheter. This time the Dr. on the floor called the NS who told her to go ahead and just take it out. They gave him some morphine and have orders for it all night long and his head is wrapped up like a mummy, but he is resting and will be able to move around better without that thing in his head.

I'm going to take advantage of this and get some rest too. We'll pray for a better day tomorrow and pray that the surgery can be scheduled for Mon and of course goes well so that we can all be done with this and go home.

Today's Events

Well since I posted this morning I thought I'd end the day with a post and try to post in the evenings from now on.

This afternoon was a little more eventfully then this morning. It started around noon when the bolt that is screwed in his head (the ICP monitor) came loose and was just sort of hanging there. Good news is that the catheder didn't come out of the ventricle but the NS had to come in and literally screw the bolt back in his head. That was something I'd rather not see again. They gave him some meds that knocked him out so he didn't feel or remember anything and he had a good nap after that.

He was a little irritable when he woke up but cheered up when daddy came in. We played catch and hit balloons and watched more Dora, imagine that. Then our neighbors came up for a quick visit and brought with them a Dora balloon. Jackson was thrilled and screamed DORA when they came in. From then on he perked up and really enjoyed playing with Suzanne and Christopher. When they left he continued his good mood and even ate a little mac'n'cheese. Now we are watching Tom and Jerry and getting ready for bed. Hopefully it'll be a good night.

Nine days and counting

Hello! I thought this would be much easier than calling everyone all the time with updates. This way you all are able to check out what is going on and don't have to wait or feel bad about calling and waking us up :).



Today seems to be much better than yesterday. Yesterday he was really sleepy and seemed pretty weak. When we took him for a CT we put him in a wagon instead of the bed and he still cried. All he wanted to do was sleep and watch Tom & Jerry. He perked up a little when he got the balloons from Nana and Papa Luban (thank you). The good news is it looks like the shunt IS working they put him on a med called diamox to slow the production of CSF to see if that would keep his pressure down. The bad news is that the NS isn't exactly sure why the pressure rises everytime the valve is shut. He also threw up a few times and they've given him something to calm his tummy and have increased his fluids.



We had a pretty good night. He only woke a few times and went back to sleep almost right away. They came in to take blood for labs around 4:30 and that set him off, though I can't blame him. They like to do labs early so that they have the results by the time the drs make their rounds. He had a few sips of water and about an hour later they came back up but they again gave him something to help nausea and some tylenol (which they have to give him up the hoo haa because his gag reflex is back).



We woke again around 8:30 and have been playing with cars and tractors and watching tv. Today he seems to be into Dora again. Take a guess how many times we've watched this since we've been here...uno, dose, trece...keep counting! He still doesn't have much of an appetite and I think we are going to just take it easy until tomorrow. His regular NS comes back tomorrow and we'll see what his plan is.