Pictures

My new shades.

I don't want anymore.

Happy boy

Hello Daddy.

Playing.

Eating a puff in my new chair.

Getting Sleepy in my play area.

This is what I like to do with my spoon while I'm eating.

Trying to eat my baseball bat cookie.

Awesome cookies that Grandma's friend made for me.

GI Update and Visitors

Nicholas had an appointment with the GI doctor yesterday. He wasn't concerned that he pulled out his feeding tube since he is getting enough by mouth. He is drinking 15-20 ounces of EleCare and eating 3-4 jars of baby food a day. He is actually eating better since he pulled the tube out. We are to continue with the EleCare and same meds for 2 months then will go back for a checkup. He might let us try something besides the EleCare at that time and will do an ultrasound to check on his gallstone. I hope we can discontinue the EleCare in a few months. It smells horrible and he doesn't like it. We have been adding strawberry syrup to it and I ordered some flavor packs to try. It is also really expensive and not covered by insurance. I'm going to try to order it on Ebay and save a little. He had his last home nursing visit for a weight check. He has gained weight each visit and was 18 pounds on her scale. He was 17 lb. 7 oz at the GI so it is hard to get is actual weight on all these different scales. He is gaining so that is all that really matters. He had PT and OT this week and did great in both. He has been pulling his head up a lot like he is trying to pull up into a sit. Hopefully he will be sitting up soon. Grandma and Grandpa have been visiting from Chicago and Aunt Heather and Uncle John will be here for a visit this weekend. I have a lot of pictures to load onto the computer and will post them soon.

March for Babies

http://ecards.marchforbabies.org/VJ96JB

We are walking in the March for Babies to raise money for the March of Dimes. In 1985 the March of Dimes funded research leading to the use of surfactant to treat respiratory distress syndrome(RDS). Without receiving surfactant shortly after birth Nicholas' lungs would not have developed and he wouldn't be with us today. If you are in Columbia please join our team and walk with us on Saturday April 24. If you can't join the walk, please consider making a donation to the March of Dimes so they can continue to save premature babies like Nicholas. Here is a link to our walk page. http://www.marchforbabies.org/teamnicholas

Children's Hospital

We had a much better experience with the children's hospital this time. I think we are also just used to it by now too. I want to highlight some of the nice things about the hospital this past visit. Nicholas spent the majority of the second half of his six week stay on the cancer and blood disorders floor. The infant and toddler floor was full when he was being moved so he went to the 5th floor. We really liked this floor. It was a lot quieter and peaceful. The nurses were great and really showed a love for their job and patients. Nicholas was a big flirt with his nurses too.

The hospital has a program called Happy Wheels that comes every Monday. http://www.happywheelscolumbia.org/ They give each child in the hospital a free toy or book each week during their visit. Nicholas got a big box of Clipos, a toy giraffe, and three books. He also got three blankets from Child Life.

There is a music therapist who would always try to come in. We finally told her he can't hear but she wanted to come in and play the guitar for his feet. Nicholas loved it and she let us borrow a guitar for the rest of his visit. He can feel the vibrations and really enjoys it. Daddy is on the hunt for a good cheap guitar now.

PT, OT, and SLP came by to work with him a little and they let us borrow a Feeder Chair. It was a chair that he could use and not have to lay in bed all day. He eventually learned how to get his head out and try to escape it.

The last week he was there it was the Children's Miracle Network Radiothan and Richie the Raccoon, the hospital mascot, came to visit. There was also a concert by Edwin McCain on the CBD floor. Nicholas got to meet his first celebrity! He missed the animal therapy day because he was discharged.

Yesterday he had his 15 month well visit. His pediatrician is very happy with him considering everything he has been through. She wants him to go to a dentist soon, that should be fun, and said to try a baking soda toothpaste. It probably won't get rid of his brown teeth but we will try anything. He was up to 17.5 pounds and 28 inches. He was down to 16 pounds in the hospital so he is gaining weight back. She said we can us scar cream on his head to see if it helps his multiple scars. We have to follow the GI doctor on what to feed him right now and he has an appointment with him next week. He had physical therapy today and did great. His therapist doesn't think he regressed and showed better head control and weight bearing on his legs. She is also going to see if she can get us a feeder chair paid for by insurance.

He is Home!

After 6 weeks in the hospital Nicholas is finally home.

5 shunt revisions
1 Externalization
1 Broviac
1 Port
1 GI scope
Diagnosed with EE
Found a gallstone
3 new medications
Temporary feeding tube
And no cochlear implant

He has done so well eating by mouth today that we haven't had to tube any feedings. A home health nurse is available to put the feeding tube back in if he pulls it out and she will also flush his port once a month. Friday he gets his last Synagis shot and his sutures removed. Monday he has his 15 month well visit with the pediatrician, only a month late. PT, OT, and speech will start again next week.

Great Progress Today

Yesterday wasn't a very good day for Nicholas. The GI doctor wanted to keep him on a continuous feed and have us try to feed him by mouth. He didn't want to eat by mouth and threw up four times. It didn't make much sense to me to have him constantly fed and try to eat on top of that. He always had a full stomach so I don't blame him for not eating. Today they switched to having us try feeding him by mouth then put the rest in his feeding tube. He has done so well today. He has taken a little more than half by mouth and no vomiting. The bad thing about this is that we have to feed him every three hours around the clock, even when he is sleeping. This is how he was fed in the NICU. Hopefully he will go home tomorrow. He will probably still have the feeding tube but it shouldn't be needed for long. He also has a diaper rash or yeast infection. This new formula gives him nasty dirty diapers and has irritated him. They ordered some cream that will take care of both yeast and diaper rash. He was supposed to get his cochlear implant today. Now only four more months to wait.

Eosinophilic Esophagitis

The results of the biopsy they did during Nicholas' GI scope came back on Thursday. He has
Eosinophilic Esophagitis. Eosinophilic Esophagitis, also known as EE is an important disorder of the swallowing tube (esophagus) that is different from Gastroesophageal Reflux Disease (GERD). EE is an inflammatory condition of the esophagus that is characterized by having above normal amounts of eosinophils in the esophagus. A high number of eosinophils indicates a food allergy. The GI doctor started him on Elecare which is an amino acid based formula that is easy to digest. He has been only tube fed since Friday to give his esophagus time to rest and heal. Tomorrow we are going to try to feed him by mouth and see if he will take a bottle and not vomit. We can also introduce one baby food for him to eat for three days to see if we can figure out what he has an allergy to. The biopsy also showed microscopic holes in his esophagus. He was started on Carafate for that. He had his last dose of antibiotics from his shunt revision today so he should be able to go home soon. He might go home with a feeding tube if he still won't take a bottle. We will have to learn how to insert the tube but that is better than staying in the hospital any longer. Blogger isn't letting me upload any pics right now.

2nd Shunt

The full GI on Friday showed everything is normal. He continued to not eat over the weekend. They placed a TP tube on Friday to feed him. A TP tube goes down his nose, past his stomach, and into his small intestine. Peds switched him from the preemie formula which has 22 calories an ounce to Pediasure which has 30.

Since he still wouldn't eat and we exhausted all GI tests his neurosurgeon decided to try the 4th ventricle shunt again. He had surgery today. He has two shunts working off one valve. The valve is programmable but the ventricles should balance themselves out since the CSF can flow freely from ventricle to ventricle. His neurosurgeon also surgically cleaned up the incision from a few weeks ago. The incision that came open when he had the huge swelling and started leaking didn't heal like it should have. He cut away around it to get rid of any bacteria that could have entered. Nicholas has 4 big bandages on his head so we don't know what anything looks like. We can try feeding him when he is ready but there are no guarantees that he will eat. We are prepared to get a G-Tube if he needs it but have our fingers crossed that he will eat.

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.