Saturday, June 26, 2010

Slow Week

This week was slow. Nicholas only had his three therapy appointments. Some people probably think three appointments a week is a lot but for us it is a quiet week. He is getting to be a little stinker during therapy. In PT he was crying so hard his therapist thought he might be hurting so she stopped. He got this look on his face like ha ha, I know how to make you stop. In OT he played opossum and acted like he was sleeping to get her to stop. He also decided he was bored with putting toys in a box so he pushed it away. His occupational therapist ordered him a chair that will fully support his head and it has a table top on it. This way he can play with toys sitting up and not have to concentrate on holding his head up. His ear has healed nicely. The steri strips are still stuck on him but we are going to leave them so we don't accidentally pull the incision open. Hopefully baths and holding a wet wash cloth on them will loosen up the adhesive. They stink from the dried blood. Next week is the big week- CI activation. Thursday we head down to MUSC and his cochlear implant will be tuned on.

Friday, June 18, 2010

Dream Night at the Zoo and More

The weekend before Nicholas' surgery was pretty busy. First we had to get a new car because our old 1998 Avenger wasn't worth fixing. Nicholas did really well for spending the whole day out of the house. After buying a new car we went to Dream Night at the Zoo. Dream Night is a worldwide event for chronically ill and disabled children. He must have qualified for chronically ill since he spent so long in the hospital this year. Anyways, the event is a private event just for these kids and their families. They had a Hawaiian theme and it was really nice. All the animal exhibits were open and they had some exhibits with zoo workers talking about the animals. We watched the penguin one and part of the gorilla. They had all the extra things to do like pony rides, train rides, feeding the giraffes and lorakeets, and wall climbing free of charge. They even built a beach in the middle of the playground area. There were a lot of games for the kids and hot dogs and hamburgers for dinner with a Hawaiian band. Each kid got a goody bag too. I was a really nice thing to do for these kids and I'm sure it is the only time some of them get out and are able to have fun. Nicholas stayed in the stroller but if he is invited again I'm sure he will enjoy it when he is older. The day after the zoo was the NICU graduates party. We saw some of his old nurses and one of the families we became friends with. We didn't stay long because Nicholas was crabby but it was still nice to go.

He is healing well from his surgery. We can take his sterile strips off next week or wait until they fall off. He had a bit of an upset stomach from the antibiotic for a few days but it passed and he just finished the antibiotic. A big surprise was the doctor himself called last weekend to check on him! That is a first. With all his shunt malfunctions we never had the doctor call to check on him and this doctor did. Must be why he is one of the best in the country. Cochlear implant activation day is July 1! This is the day they will turn it on and he should be able to hear. So exciting! Nicholas had speech and OT this week. We skipped PT to let him have some more time to rest and recover. We also got an appointment with the allergy doctor for July 8. This doctor specialized in food allergies so hopefully he can figure out what caused the eosinophilic esophagitis.

Friday, June 11, 2010

More About CI Surgey

The Cochlear Koala. This is what the processer will look like.

Cochlear Koala and backpack.

Feeling better.

This is without the ear cup. It looks good here but you can't see behind his ear where all the work was done.

Bleeding after surgery.

Nicholas and Daddy sleeping in the PACU.

Right after surgery and the morphine.

Right after surgery in the PACU.

We headed down to Charleston on Tuesday to stay the night since Nicholas had an early surgery. The hospital called and said we had to check in at 7am. We left our hotel at 6:30 and the pre-op nurse called to see if we were still planning on coming for the surgery. I told her yes and that a nurse called the day before and told me to be there at 7. She said we were actually supposed to be there at 6. So the day started off in a stressful rush. We checked in at 6:50 and they started the pre-op. They had to go over his medical history and access his port. The anesthesiologist talked to us and said that he would like him to stay the night for observation. We were fine with that. He has never gone home the same day as surgery so we preferred he spend the night. The doctor doing the surgery also talked to us and said that it should take about 2 hours. We said goodbye and went to the waiting room. The anesthesiologist came out and said he went to sleep without a problem. A little after 10am the doctor came out and said the implant went in beautifully. He said to leave the cup dressing on for at least 24 hours.

We were able to go back to the PACU (Post Anesthesia Recovery Unit) a little while later. Nicholas was really upset so they gave him some Morphine and Tylenol. We both held him and when we put him back on the bed his gauze cup was full of blood. They called the ENT doctors in to look at him. The bleeding had stopped but they added some more Sterile Strips. The stitches are all internal and he has a bunch of sterile strips on the outside. We were in the PACU for about 4 hours waiting on a room in the children's hospital. Then they moved us to Same Day Observation to wait for a room. Nicholas slept most of the day and seemed very uncomfortable when he was awake. While he was in SDO his monitor showed his blood oxygenation was in the low 90's so we were a little worried about him. Then it showed his heart rate kept going over 200. He wasn't acting like it was that high so I asked the nurse if she could check. She listened and counted and got 120. She also put leads on him to monitor his heart rate that way. The pulse ox sensor on his foot wasn't picking up right and he was fine. One of the nurse in SDO used to work in the PICU at the children's hospital in Columbia.

We finally got moved to the children's hospital around 6. There were quite a few empty rooms so I don't know why it took so long to get him in one. The room was similar to the hospital here. It was a newly renovated room too. The nurses were all great and it was a good hospital stay. He finally started perking up after 7pm. The ENT resident did rounds at 6:30 am on Thursday and wrote up his discharge. We were on our way home by 9am.

Nicholas was ready to start playing and rolling around right when we got home. He even rolled with the ear cup on. He got a blister on his forehead from the pad under the elastic band. He also had a lot of swelling on both sides of the straps. I undid it to take it off since it had been 24 hours. The cup was stuck after I undid the straps. I pulled it back and the gauze was stuck to his ear with dried blood. I didn't want to hurt him or pull off a sterile strip so I strapped it back on him and was going to try again today. I had him in his crib and went to look at him a few minutes later and he was playing with the gauze and cup. I guess he wanted it off. He never cried so it must not have hurt pulling the gauze off. He seemed a lot happier without it on so I left it off. His ear looks a little black and blue and there is dried blood around it. He isn't playing with it which is a relief because we thought he would trying to play with his ear. The incision goes from the top of the top of the ear all the way to the bottom and it is right where the ear meets the head. So you can't see it unless you look from behind his ear and the scar won't be visible. The surgery was to implant the piece that goes under the skin and connects to the nerve. We will go back in about a month and get the processor which is the part he will wear and they will activate it at that visit.

Nicholas got a Cochlear koala and backpack. The koala has a cochlear implant too- it is cute. He also got a little stuffed bear they call a prayer bear that a church group makes for the kids. He is doing well. We have been giving him Tylenol because he has been little fussy. For the most part he is back to himself and should be good to go for therapies next week.

Wednesday, June 9, 2010

Cochlear Implant

Nicholas had his CI surgery this morning. Surgery went well. He has been crabby and in pain for most of the day. He is spending the night at the hospital for observation and should go home tomorrow. He seems to be feeling better now. He has been smiling and playing with the crib rails.

Thursday, June 3, 2010


Good Therapy

Nicholas only had therapy this week. He did well in all three. In speech we are working on getting ready for Audio Visual Therapy which he will do after his implant is activated. We are supposed to show him a toy or stuffed animal and make the sound it make. Like show him a cow and say moo. He finally showed off his rolling and pushing up for his physical therapist. We are working on a lot of sitting and she thinks he will be sitting independently in a month or so. She also said that she is pretty positive he will walk in time. She doesn't see anything at all wrong with is legs and they are very strong. In OT we are working on banging things together and getting him to use his left hand more. Next week he will only have speech and PT and then we are going to Charleston for his cochlear implant surgery on Wednesday!