Saturday, January 30, 2010

Shunt Revision

We took Nicholas to the ER yesterday morning. Thursday night he was up all night screaming and threw up Tylenol. I had been worried about his shunt for over a week because of a little swelling but he didn't show signs of a malfunction until Thursday night. The shunt in his lateral ventricle wasn't working and they were able to get him into surgery yesterday afternoon. His neurosurgeon was out of town so a different doctor did it. She said that the valve and the catheter weren't working. She also said that the valve not working is very rare- only our child. She said that when she got down the burr hole there was some scar tissue and under the scar tissue there was a pool of CSF that just kept pouring out because it couldn't drain into his body. She replace the valve and catheter and said if all goes well he could go home on Sunday after 48 hours of antibiotics.

He slept all day and night yesterday. He lost both his IV's and they had 4 people try to get a new one in and after sticking him about 10 times they gave up. One nurse mentioned that he might need a central line. I said he isn't getting a central line for antibiotics and there has to be something he can take orally. He also vomited twice last night after drinking Pedilayte. They called a doctor and he consulted with neurosurgey. The decided to give him some medicine to stop the vomiting and to do oral antibiotics. This all took about 3 hours to do and he was finally left alone by 3am.

Today he is still sleeping- which isn't a good sign because that could mean something is wrong with a shunt along with the vomiting. He vomited again this morning and they did another CT. They gave him a shot of antibiotics and won't do an IV unless it is needed for something besides the antibiotics. He still isn't peeing well and is little swollen. We are waiting for neurosurgery to do their rounds and tell us the results of the CT.

Friday, January 29, 2010

Stupid Shunt!

Guess where we are. Guess what appointment we will miss on Monday. Guess what surgery won't be on March 9. Poor kid has the worst luck.

Sunday, January 24, 2010

CI Surgery Date

This is how we found Nicholas this morning. I broke the ties on the bumper changing his sheets so we took it out since he would pull it on top of himself. Guess I need to sew the ties back on.

Nicholas' audiologist emailed me and asked if we can do his cochlear implant surgery on March 9. I told her yes! I wasn't expecting the surgery to be until at least April so this was a nice surprise. We go back to MUSC Feb. 1 to meet with the audiologist, the surgeon, and a speech therapist.
Last week he had OT and a speech evaluation, PT was canceled. The speech therapist is going to work on eating right now until he gets the implant. Hopefully she can help him with table food since he gags and vomits every time we have try table food. His favorite is still apple/blueberry and yogurt. One of the other preemie moms gave me the idea of pudding so we are going to try that too.
This week his PT session is going to be with the Theratog guy. His therapist will be there too and they will decide if we should keep the straps like they are now or if they want to try a new configuration. He is supposed to have Speech right before PT but we forgot about the Theratog appointment so we have to call the speech therapist to see if she wants to do a half session or start next week. He is going to have speech and PT back to back but it should be ok since speech isn't physical work. He also has early intervention and OT.

Wednesday, January 20, 2010

Eye Appointment

Nicholas had a good eye doctor appointment yesterday. These appointments are usually horrible because they have to dilate and numb his eye and use a torture device to hold his eyes open. Well they only dilated his eyes and didn't use the torture device. He is a little near sighted and his left eye is a little worse than the right but no need for glasses right now and we don't have to go back for a year. His left eye is the one that had more laser when he had his ROP surgery so that makes sense that it is worse than the right eye. They also looked at the turning in of his right eye and said that it isn't bad and should correct itself. He also has Horizontal Nystagmus, dancing eyes, which should also correct itself. Both the turning in of the right eye and the nystagmus is nothing new. We have noticed both ever since he came home from the NICU. They also checked his optic nerve. The doctor said that they do this for kids with Hydrocephalus because they can check on the shunt. If there is swelling behind the optic nerve it usually means there is something wrong with the shunt and they will call the neurosurgeon. Nicholas didn't have any swelling and it was nice to have a quick shunt check.

Monday, January 18, 2010

This past week Nicholas had early intervention on Monday. He showed off for Beth and did a lot of grabbing and playing. She was really happy to be able to see him do everything. He is usually hungry or tired during early intervention and doesn't want to do anything. We also discovered during EI that he likes when Mark lifts him up above his head and brings him down quickly. It makes him laugh and smile. I'm trying to get a video of it but he doesn't laugh every time. On Tuesday he had PT and did well. Wednesday he had his monthly Synagis shot first thing right before OT. Surprisingly, he did really well during OT after getting the shot. This week he has PT, OT and a bad eye doctor appointment.

Sunday, January 10, 2010

Friday, January 8, 2010

14 Months Old!

Wow, I can't believe Nicholas is 14 months old. Time has just flown by since he came home from the NICU. This week was originally going to be busy with an appointment every day but we ended the week with only 2 appointments. On Monday, early intervention was rescheduled because the EI's daughter was sick. Nicholas can't be around anyone who is sick or has been around someone that is sick. Tuesday he had PT and his therapist was really happy with him. She said that she can see a huge improvement in his trunk and neck with the Theratogs. He keeps his head held up much better when he is sitting and he can even hold himself up on his tummy for a few seconds before falling. Wednesday he had OT. She was very happy with him too. She worked on grabbing for toys while sitting and he did well with that. She also had him hold a little block in each hand and showed him how to bang them together. He held them for a little while then dropped them. She also wants us to use a massager on his left hand every morning to wake the muscles up. He keeps that hand in a fist when he is relaxed. He will use it when he is playing and it is easy to open but he definitely likes his right hand better. On Thursday he was supposed to have an appointment with the Theratogs guy but he had a death in the family so that was rescheduled. Today he had an appointment for his monthly Synagis shot. That had to be rescheduled for next week because of insurance. Mark's insurance started this month and it is the primary insurance so they had to get pre-approval for the Synagis shot from BCBS. They called like 10 minutes after Mark left he office and had approval but wouldn't let him come back in for the shot. So now he has to get it next Wed. before OT.

The Theratogs are definitely helping. He is getting used to them more and wears them from about 7 am to 6pm. When we take them off he does what I call the I'm free dance. The hearing aids don't seem to be helping. He also learned how to pull them out. They also got clogged with wax so even if they did help him hear anything he wouldn't have been able to with a wax clog. He is doing well with eating jarred baby food and prefers fruits. His favorite is apple/blueberry. He is not a fan of green veggies or meat. We gave him a turkey kind the other night and he hated it so we gave it to the dog. Bella was eating it and Sydney came by her and Bella picked the whole jar up and took off. We took it away from her right away but that was really funny. Puffs have been more of a miss than hit. One night he ate 5 in a row but then earlier this week I gave him a half of one and he gagged an threw up. Mashed up table food causes gagging and vomiting too. He has 2 top teeth coming in. One is much further along than the other. He also has 2 teeth on the bottom and all 4 of them look to be a nice shade of yellow/brown. Prolonged use of TPN, the nutrition he was on in the NICU, can cause teeth to be discolored. Of course this would happen to him. His toy penguin has been yelled at a few times for being in his play area. Both Mark and I have mistaken the penguin for our cat Zorro. Poor Zorro must hate the penguin because he keeps getting in trouble for looking like a penguin. That's about all for now.

Blogger isn't letting me upload any pictures so I will do that later.

Sunday, January 3, 2010

Hearing Aids

Nicholas got his hearing aids last Thursday. We can't really tell if he can hear anything or not. We have to do a hearing aid trial before he can get the cochlear imlant to prove that even with hearing aids he doesn't have enough usable hearing to not need the implant. We turned the radio up really loud in the car on the way home and he looked like he might have heard it but he could have felt the bass vibration too. When we got home we banged pots and pans together and he looked up each time. We tried it again the next day and he didn't do anything so who knows if he can hear a tiny bit or not. We got back on Feb. 1 to meet with the audiologist and to go in the sound booth with the aids on, he also has to have a speech evaluation done at MUSC and we will meet with the surgeon too. Hopefully we will have a surgery date when we are done with our next visit.

This week he has Early Intervention, PT, OT, an appointment with the Theratogs guy and a Synagis shot.