1 Year Adjusted

Today is Nicholas' 1 year adjusted birthday. This is the day he should have been born a year ago. A lot has happened the past few days. Tuesday he got a port placed instead of a Broviac. This is a permanent access site for IV fluids, IV meds, and blood draws. It is common for cancer patients. The surgeon felt this was the best thing to do since it is so hard to find a vein and they had a hard time getting a Broviac in a few weeks ago. It sucks but at least he won't be pocked a million times each time he has a shunt malfunction. The port has to be flushed once a month and a home health nurse will come to our house to do that.

Neurosurgery has let peds take over for a while to rule out any reason besides Hydrocephalus why he isn't eating. Yesterday an ENT doctor did a scope of his throat. He commented that he probably isn't a good eater and that his vocal cords are very immature. He said they look like a newborns. He also said that it looked like he could be having some reflux. He also had an echo of his heart done yesterday. The pediatric surgeon who placed the port ordered an echo because he thought his heart looked enlarged. Everything is fine and his heart is normal size.

Today he was supposed to have a sedated full GI scope but there was an error in booking the OR so it is rescheduled for tomorrow. He has started to eat more. Today we are up to 18 ounces of baby food and formula combined. He only had 7 ounces yesterday and less all the previous days. He is more willing to eat the baby food than drink the formula. The GI tomorrow will give us an answer about whether or not he has reflux or some kind of irritation that is causing him not to want to eat. They are going to place a feeding tube while he is sedated so he doesn't feel them putting the tube down his nose. He can still eat orally with the feeding tube but he needs his nutrients so he has to get it. The G-tube has also been brought up but that will be a last resort if he doesn't start eating.

All of his stitches were removed today. If he was eating normally, we wouldn't think anything is wrong with him. His eyes have been crossed but are improving. Now I'm wondering if he really did need to power through this shunt thing and the not eating isn't Hydrocephalus related. The peds doctors said that it isn't uncommon for kids who have been so sick, had so many surgeries, and in the hospital for a long time regress and stop eating. He might just have to work his way back up. I asked for a speech therapist to see him to work on the eating. He has missed PT, OT, and Speech at home for 4 weeks in a row. He is happy and active so as soon as he eats normally we should be able to go home.

Let The Testing Begin

Neurosurgery repeated the head CT, Shunt O'gram, and abdominal ultrasound this morning. Everything looks the same as it did last week. His ns is still reluctant to do a 4th ventricle shunt because his last one didn't do any good. So now they are going to do all kinds of testing to rule out any other reason why he isn't eating. They are starting with ENT and GI. He lost his IV from last Wednesday and couldn't find a vein to start a new one so he is going to have to get another central line. Hopefully these tests will be done quickly and they figure out what is wrong. Friday will be a month in the hospital. :(

P.S. I will take some pictures tonight!

Team?

So 2 people from the neurosurgery team did rounds this morning. They say that they consult with the pediatric neurosurgeon but still have no clue what is going on. How can they be a team if only one doctor knows what is happening? Nicholas still doesn't want to eat so we were feeding him by syringe. He kept 4oz of formula and 4 oz of applesauce down yesterday but threw up 1 oz of formula this morning. The "team" said his CT is fine and asked if peds is following him; even though his actual neurosurgeon told me yesterday that by looking at his scans the 4th ventricle needs to be shunted but he is reluctant to do that since we already have. So the "team" is asking for peds to figure out why he won't eat and is vomiting since his scan looks good. So we'll see what happens and if peds orders more tests, xrays, whatever of his GI tract to find out why he is having issues. Maybe they will diagnose him with the stomach flu again like they did during one of our ER visits when he really had a shunt malfunction. Dr. Mom thinks that he probably needs the 4th ventricle shunt and the not eating and vomiting is Hydrocephalus related and not GI problems. The GI doctor looked at the ultrasound of his gallstone and said it is very small and he isn't showing symptoms of that being a problem so he started him on meds.

Waiting

I just had a talk with Nicholas' neurosurgeon. He still wants to try and wait this out. He said that people usually adapt to an over draining shunt. He looked at the Theratogs and said that those would work for wrapping his stomach. By wrapping his stomach, we are putting pressure there which will cause cause less pressure in his brain thus slowing down the shunt. He said by looking at the scans, the obvious answer is the 4th ventricle needs to be shunted. He is reluctant to do that since he already had one and he feels it didn't do him any good. He said he is willing to wait up to a month for him to adapt but will do something sooner if he continues not eating. He will be in the hospital as long as he needs fluids. He said that he could change the valve in his current shunt but that he should adapt to it and another surgery increases his risk of a shunt infection. If he gets a shunt infection the shunt has to be removed then he will be treated with antibiotics and the shunt will be put back in. So it looks like we will be here for a while while we wait.

Observation

Nicholas was admitted to the hospital for observation yesterday. They did a CT, x-rays, and an abdominal ultrasound. Everything looked good. The shunt is working and his ventricles look good. His neurosurgeon wants to try to power through this. He doesn't want to do another 4th ventricle shunt because he doesn't think it did him any good when he had it before. They kept turning it up until it was basically turned off so he most likely didn't need it. The shunt he put in last Friday is not programmable and it is the shunt with the least resistance and highest flow, meaning it is draining the most CSF possible. The nsg is thinking it might be over draining a little. He ordered an abdominal binder to wrap around his stomach and put pressure on the tubing to try and slow down the release of fluid. He has eaten and not vomited but he still isn't right. He seems uncomfortable and in pain. So we are just waiting to see if he will get past this without another surgery.

While they were doing the ultrasound they found a gallstone. Gallstones can happen in preemies for a lot of reasons like prolonged use of TPN and Lasix. He was on both of those for a long time. A pediatric surgeon looked at the ultrasound and said that it shouldn't require surgery to remove the stone or his gall bladder. He will have a consult with a GI doctor today and will probably be started on a medication to help break up the stone.

Back At The ER

We took Nicholas back to the hospital this morning. They did a CT and x-ray. His lateral ventricle looks good but his fourth ventricle is enlarged. The fourth ventricle is where his second shunt was that was clamped off then removed last Friday. They are having a hard time finding a vein for an IV so someone from the NICU is coming down to try. We are waiting on his actual neurosurgeon to come talk to us. He isn't on call today but is there so sometime between now and next week we might see his doctor. He will most likely have to get the second shunt put back in the fourth ventricle.

I just got an email from MUSC. His new cochlear implant date is June 9.

Home but I Think We Have a Problem

Nicholas was finally discharged last night. We waited all day for neurosurgery to show up to discharge him then we had to wait for someone from pediatric surgery to remove his Broviac. We got home around 6pm and he was so happy to be home.

He just threw up so I'm waiting on the neurosurgery nurse practitioner to call me back.

New Shunt

Nicholas had his new shunt placed on the left side yesterday. His second shunt on the right and the external shunt were both removed. He is doing well so far. He had a CT this morning but we are still waiting on neurosurgery to do rounds today to let us know if the scan looked good. He will probably move out of the PICU today too.

Bad news, his cochlear implant has to be postponed. His surgeon at MUSC said that he can put the implant on the right side rather than the left but he wants to wait 1-2 months after the shunt removal. They said it will be June but I do not have a date yet.

We also got about 6 inches of snow yesterday! Poor Nicholas had to spend his first big snow day in the hospital.

External Shunt

Nicholas had surgery again yesterday. They removed his lateral ventricle shunt and made it a temporary external shunt. He has a catheter coming from his head to a collection tube and a bag that is hanging on an IV pole. They are planning on removing it on Friday and placing a new shunt on the left side of his head. His fourth ventricle shunt will also be removed.

He seems to be happy overall, just bored. One of the first things he did when he got up to the PICU yesterday was pull the catheter in his head. That was scary. I got his hand off of it and then he grabbed his IV tube and put it in his mouth. He has been trying to get the leads off his chest and playing with the dressing on his head. Such a boy!

Back to Surgey Tomorrow

Friday night Nicholas' neurosurgeon tried pushing in the big bubble of fluid to see if it would go down with pressure. It didn't so he decided not to wrap his head and to just wait and see what happens with the swelling. He has been eating well and keeping it down. He has also been happy and active. He isn't showing signs of a malfunction but we know something is wrong because of the swelling.

Yesterday his incision started leaking fluid. The surgeon on call came and drained a lot of fluid out and added a few more stitches. He also wrapped his head. Nicholas got the wrapping off twice already.

Today they discussed and came up with a new plan since the swelling came back after the fluid was drained. So tomorrow they are going to make an incision in his abdomen and pull the tubing out to see if they can get it to drain. If it doesn't drain they are going to do an external shunt temporarily. Then they will move the shunt to the left side of his head and get rid of his fourth ventricle shunt.

This will put the shunt where his cochlear implant is supposed to go. Everything will be removed from the right side so the implant should be able to go on the right. That surgery might get pushed back because of all these shunt problems.

Still Not Right

Tuesday afternoon they moved and replaced Nicholas' lateral ventricle shunt. He also had to get a Broviac, central line, because all his veins are full of scar tissue and they couldn't get an IV in. I'm not thrilled that he has the Broviac but it's good because they don't have to stick him a million times to get an IV in. After surgery his head looked great and the swelling had gone down. Wednesday the swelling came back but he was eating, awake, and active so it seemed ok. The neurosurgeon said that when they go in to fix the shunt any CSF that couldn't go down the shunt escapes to the path of least resistance which could be in between the tissues in his head. He said he wants to watch it and hopefully it will go away on its own. He also said he could wrap his head to add pressure to force the fluid down. His new shunt is programmable so they also changed the setting to release the fluid faster. Today he has been extra sleepy and started vomiting again. They told me that they want to wait and see if he vomits again before they will order a CT. I tried to tell them that he isn't a puker and only throws up when he has a shunt problem but they still wanted to wait. He threw up half an hour after they left so his nurse called and they ordered a head x-ray to check the valves. So, they are thinking that they either need to reprogram the shunt again or open up the fourth ventricle shunt again. This is so frustrating! It should have been one surgery and a 2 day stay but it turned into 3 surgeries and the possibility of another and a week stay so far. I just can't believe they can't get this right.

Surgery #13

Nicholas is back in surgery. The swelling and vomiting never went away so they did another CT and a shunt o'gram (x-ray) this morning. His right lateral ventricle was very enlarged. They are thinking that all the fluid under the skin (his head and face and the big goose egg where the incision is) is from CSF going around the catheter and up the burr hole and escaping. So they are going to make a new burr hole and move the shunt about half an inch back. The doctor said that when they keep doing revisions sometimes they have to make a new burr hole because the hole just gets too big from all the work done in it. This one one of the three options they gave us on Sunday. For now they are going to keep the 4th ventricle shunt clamped off but that could change in the future. Hopefully this will fix everything.

His appointments at MUSC were changed to March 4. His cochlear implant surgery will still be on March 9.

Another surgery

Nicholas had another CT on Saturday night. The ventricles looked fine so the neurosurgeons really didn't know what was going on. So they came up with three options. Go in and clamp off the second shunt since all these problems seem to have started after he got his second shunt, go in an put in a bigger valve or go in and make a new burr hole. We agreed to do the least invasive one which was to clamp off the second shunt. After the surgery the neurosurgeon came to talk to us and she said he was already moving around and the swelling was less firm meaning it had started to drain. He was put in the PICU and seemed to be doing a lot better. Last night he started drinking formula and kept it down. He has been awake and looked good. We just gave him another bottle, he drank less than an ounce and threw up. So we have no idea what is going on now. All the neurosurgeons are in surgery right now and will be in to see him sometime late this afternoon.

We rescheduled his appointments at MUSC for Feb. 18. His audiologist did not say that will push back his surgery so I'm assuming he will still get the CI on March 9.