Jack Passed His Pre-Surgical Testing

Jack passed! The doctor signed off and Jack is cleared for his surgery. I am pretty happy about it. I have not heard from NYU yet so I don't even know what time it is yet. It was supposed to be 8:30 am last time so I am thinking it should be about that time.

Julianna was examined as well. No one thought the node on her rib cage was significant. Her blood work came back and there were a few weird things there. First, it showed that she has had the Epstein Barr virus. It does not appear active and we are not sure when she had it. I suppose it could have been anytime since the symptoms are typical of any childhood upper respiratory infection. She also had a low blood glucose. It was 63, not profoundly low but not normal (normal low is 80). We had just come from breakfast with Santa so she had recently eaten. There was also something off with her BUN (blood urea nitrogen). She said it was insignificant but I didn't see the values. I am going to call Labcorp and get a copy of the results.

When the doctor was talking about the blood work she said everything that could suggest a lymphoma or leukemia is normal. Obviously that is great, but she didn't say too much about the values that were off. I am certainly going to investigate more. Julianna's teacher mentioned to me that she seemed a bit fatigued lately and wasn't up to par. I am hoping whatever it is will go away soon, but I will see someone else if it does not.

So we did have a productive visit and I am relieved that the news was pretty good.

One Surgery Date Cancelled, One Coming Up

Sorry I haven't posted in awhile. Things have been a bit crazy here. Jack's surgery was originally scheduled for 11/20. It was cancelled because he failed the presurgical testing.
We went to the pediatrician. She did not like the way his lungs sounded. Jack's lungs never sound great because he has bronchopulmonary displasia (BPD). She sent us to the pulmonologist who said he could not have the surgery because he was congested. He really wasn't that congested but no one will take a chance with Jack's lungs because of his history. He is now on inhaled steroids twice a day via nebulizer.
He is rescheduled for the surgery for Wednesday December 11. He has presurgical testing this afternoon. I am hoping the pediatrician clears him and we do not have to go to the pulmonologist.
Here is more information about some of Jack's lung issues.
What is BPD? Bronchopulmonary Dysplasia (BPD) is a lung disease that occurs most often in babies who were born severely premature—more than 10 weeks before their due date. Babies with BPD have inflammation and scarring in the lungs.
BPD usually is a complication in premature infants being treated for respiratory distress syndrome (RDS). RDS is a condition in which the baby's lungs are not developed enough to take in the air they need.
Babies with RDS must have oxygen and often need to be on a breathing machine to prevent brain damage and to save their lives. But the oxygen premature babies need can damage their lungs. When it must be delivered into the babies' lungs by a machine, it may be even more damaging. The infants whose lungs require this treatment are at risk for developing BPD.
Many infants with BPD recover and improve with time, achieving normal or near normal function.
Jack was on the ventilator in the NICU for a prolonged period of time. That caused his lungs to be damaged and scarred from the pressure. At one point the ventilator was not enough for him and he was put on an oscillator. The oscillator sprays oxygen into the baby's lungs and has less pressure. The oscillator saved his life. Luck was on our side because essentially the oscillator is it. At one point in his treatment his numbers were dropping even on the oscillator. They explained to me that they could maybe move him somewhere that has the technology for ECMO, which is essentially a heart lung machine.
ECMO (Extracorporeal Membrane Oxygenation) is a procedure that uses a machine to take over the work of the lungs and sometimes the heart. ECMO is used for babies, children and adults. It is a special way for a machine to help your child, while he or she is very sick. ECMO provides time for your child's body to rest and recover. You might hear your doctors, ECMO specialists, or nurses refer to this process as ECLS (Extracorporeal LifeSupport) or bypass, which is saying the same thing, just in a different way.
Let's take a moment to better understand each word in ECMO.
Extracorporeal means that the blood circulates outside of the body with the help of a machine. Membrane Oxygenation, referred to as the "artificial lungs," is a special part of the machine that puts oxygen into the blood and takes out carbon dioxide just like our lungs do.
We lucked out and Jack rallied with the oscillator, although it took some time. On Christmas Day last year Jack extubated himself and was able to breathe on his own. It was nothing short of a miracle and no one could believe it. He then went on high flow nasal oxygen and remained on that for a few months. He still had plenty of issues and stopped breathing countless times. He rallied each time.
These are the reasons why thay worry about Jack with the general anesthesia. They are worried that they will not be able to extubate him and he will not start breathing on his own. He had general anesthesia in June when he had his ear tubes placed, but it was a much shorter operation and a different type of anesthesia.
I am hoping that he will pass and be able to have the surgery because not hearing is really slowing his development. However, I am a nervous wreck about him having the general anesthesia.
Julianna will also be seeing the doctor today. She had a very enlarged lymph node and a cluster of accompanying enlarged nodes at the base of the left side of her neck. I took her to the doctor who didn't seem to think it was a big deal. She gave me a prescription for blood work but told me I could wait to see if it changed. She said if she gets a fever it would explain why it was there or if it went away not to worry about it. Well, it got smaller so I was not too worried about it. However, the other night I noticed she has a very enlarged lymph node at the base of her ribcage. It freaked me out and we went immediately for the blood work. Today we are following up with the pediatrician. They had told me last time if the nodes hurt it is usually nothing. They both hurt her when they are touched so I am hoping it is nothing. It is strange because she has no fever and they also cultured her throat, negative. She has no complaints of anything at all. I have spoken to other Moms about this and have heard numerous similar stories where it turned out to be nothing at all. Obviously I am hoping for the same outcome.
Other than all this medical stuff we have been busy. We had two Santa vistis in two days. On Saturday we had breakfast with Santa with Grandma and Pop-Pop and on Sunday we saw Santa agian at my work kid's Christmas party.
So, hoping all goes well later today. If so, Jack will be getting his surgery on Wednesday and I will have a sigh of relief about Julianna.

Pictures

 These are not in order but they are all pretty recent.

Jack doing tummy time. He is getting really good at pushing himself up.

Jack wearing his hearing aids.

Jack wearing his helmet.

Jack the pumpkin boy. He is sitting by himself without support.

         Julianna as Draculaura from Monster High.

Julianna and Jack on Halloween.

                                                           

            Pictures of our family.

                                                         

 Me with my babies.

                             

           With Grandma and Pop-Pop.

                                             

  Julianna with Uncle Rich at the Maker Faire.

Moving Along and Rolling Over!!

We are moving along and getting some dates set. Jack will have his surgery for bilateral cochlear implants on 11/20, pending insurance approval. They are changing a lot of the protocols and they said he might not even have to stay overnight. He is likely to be the first case since they go in age order with the youngest being first. They do this because of the fact that they can't eat prior to the anesthesia and the babies have the hardest time with that. I am happy we are moving along with it. If all goes well he should be hearing before Christmas.

Jack will get his helmet on Wednesday the 23rd. We went for the fitting last Friday. They put a socklike material shaped like a hat on his head. That material had sensors all over it. Then they used a type of gun that read all the sensors. All that data went to a computer and it made a 3-D model of his head. They will use that to make his helmet. I got to pick from a bunch of different patterns but I decided on basic blue.

Jack rolled over!! He finally did it! He went from front to back in therapy but without being touched. He has since done it a few times at home. I am very proud of him and relieved. He is seeing a Developmental Neurologist on Wednesday so I can get a better idea where he stands with everything, but I am thrilled that he finally rolled over.

Jack's hearing aids are not doing anything for him. I have not been putting them on him much because I am concerned that he will choke on them or swallow the battery. Button batteries are a huge big deal if a baby swallows them. If that should happen they usually require surgery to get them out and and caustic if they are left in. If he is not getting any benefit from the hearing aids I prefer not to chance any issues. I do sometimes put them in when he will be right in my field of vision, but never in the car and I am leery about it for daycare.

Jack is a very verbal baby. People always ask me why he coos and yells so much if he is deaf. I am told this will stop if he is not implanted. That is one of the reasons why it is important to get the cochlear implants so early. All the cooing and repetitive noises babies make are the building blocks to language. He needs to do this in order to learn to speak later. If I sit him on my lap and make certain noises he is able to copy them. When this first started happening I was sure they had made a mistake and he was not actually deaf. The teachers from the deaf school and the evaluators all told me that deaf babies do this. He sees how I am moving my mouth and copies that. They said that is one of the reasons they do universal newborn hearing screens now, because deaf babies fool us. They said that, before the screening, they would not know the babies were deaf until they failed to develop language at 3 or 4 years old. That is really late to find out that a baby is deaf. If you want the child to speak you need to find out early and start therapy right away.

Jack has physical therapy twice a week, speech therapy once a week and cranio-sacral therapy once a week. NYU told me they want him to have auditory therapy four times a week and the deaf infant program wants him to attend twice a week for 2 1/2 hours each time. I am having difficulty getting all these things done, getting to all the doctors appointments, getting to work and doing everything for Julianna. Our house is still under construction post hurricane Sandy. It is getting closer to completion. I am hoping it is finished soon. When it is I would like to hire a full time, driving nanny to take Jack to a lot of his appointments as well as get Julianna on and off the kindergarten bus. Right now I am getting by with luck, prayers and the help of great friends.

I went to get my hernia checked again and it is looking like I will need the surgery very soon. I am hoping I can coordinate it with Jack's surgery and we can recuperate at the same time. I hope it works!

We are busy but we are enjoying fall. We have gone to the pumpkin farm and apple picking. I took Julianna to the Halloween events at Sesame Place and she had a ball. She is still in ice skating, dancing, violin and arts and crafts.

I just passed the 4 year anniversary since my cancer surgery. I have only one more year that is considered pretty risky. We are super happy and life is good!!

Jack Needs A Helmet

I took Jack to the neurosurgeon because his physical therapist said she is concerned that his torticollis is not responding to therapy as much as she had hoped. Jack's torticollis was so bad at first and it got much better right away with therapy. It wasn't completely better and he seems to continue to want to hold his head to his right side. Since he does this his head is developing an odd shape.

The neurosurgeon examined Jack. He said he is generally against helmets. He feels that a baby's head shape will get better by itself as the brain grows and they start spending more time on their stomach.
He also said that he felt Jack was an exception to this. He said Jack had as bad a case of torticollis and plagiocephaly (misshaped head) as he has seen. He said that since Jack is not yet rolling over and we don't know when he will, that it might not self correct. There is a small window of time where the skull is soft enough to correct the odd shape and we may miss it if we don't act soon.

He gave me a prescription for the helmet. I need to take him to an orthotist where they will make it for him. I am hoping they will figure out a way that it can work with the hearing aids and then the implants.

I feel so bad that Jack has to endure all these treatments. He is a happy guy and doesn't seem to complain much but it seems so unfair. I am happy that he is getting it all now and I remain hopeful that he will progress to the point that he doesn't need more than the cochlear implants by the time he goes to school.

Jack is ten months old now. He is still not able to roll over. I keep being assured by all the therapists that he does not have cerebral palsy. I remain unconvinced. I don't get any answers when I ask why he is not progressing. He has therapy four times a week and I do the exercises with him as much as possible yet he does not seem to be getting much better. I am looking for different specialists to take him to to see if I can get any new ideas.

Hearing Aids, NYU, Dr. Citron

We finally got the hearing aids. We got them on Wednesday the 11th. He didn't seem to have any notable response to anything with them in. There is a lot to the care and testing of the hearing aids. I had a lesson on everything when we picked them up.

On Thursday and Friday last week we went to NYU. We had three appointments. Two of them were to test Jack's hearing in the booth. They put us in a sound proof booth and put a small ear phone like device in Jack's ears. Then they send sound through them to see if he responds. If they think he does they make a stuffed monkey light up and play the cymbols.

They felt he responded to certain sounds in his left ear at about 75 dB. He only responded at certain frequencies. Personally, I really didn't note him to be responding all that much.If he moved his head or turned at all they were saying he was responding. He is a pretty antsy guy so it is really hard to tell why he is moving. Hearing at 75 dB is still a pretty profound hearing loss and he still qualifies for cochlear implants, but it is a lot different than the results of the auditory brainstem response (ABR) tests that he had at LIJ.

The audiologist told me that his hearing may be a bit better than it was when he was previously tested. If that is the case, his hearing aids are programmed wrong. She said that they could be hurting his ears and they may need to be reprogrammed. So I took them off him. She asked me if I wanted Jack to have another ABR at NYU. I told her that I do. The ABR is objective and the behavioral booth is very subjective. I don't want to damage any residual hearing he may have by using hearing aids that are programmed wrong.

The next day he had the same test for his right ear. He was a little irritable and the test was coming out all over the place. His right ear has auditory neuropathy and that means he doen't process sound even if he hears it. He did not test well with that ear.

Jack was also evaluated by a speech therapist. She was listening to his babbling and counting the different types of sounds he makes. She told me his cry sounds immature and she thinks he may have some vocal cord damage. He will need to be evaluated for that. It seems like we hear bad news at all of these appointments and I find it pretty frustrating.

We go back to NYU this Thursday for two more appointments. I am going to try to take the train this time. It was pretty tough driving in there and I was forced to park in a garage costing $37. I think it might be cheaper and easier to take the train even though it will be rush hour. We will see.

On Sunday we had my Dad so Betty could go to a baby shower. He is getting pretty bad and it was hard dealing with him. Julianna was very helpful and she is pretty understanding about Pop-Pop's brain disease. It was nice to be able to give Betty a bit of a break.

I had an appointment with Dr. Marc Citron my medical oncologist. He took blood and sent me for a chest x-ray. He did an exam and said he thinks everything looks normal. He also told me that I am now in the time where I have the greatest risk of recurrence. Once this year passes my chance of recurrence will start dropping dramatically. It can be pretty stressful to think about so I try not to.

Julianna is enjoying school and her activities. She has violin, ice skating, dance and arts and crafts. I am trying to find a place for swimming lessons that is a little closer to home than our last place. Jack i s happy and is proud of his two new teeth. We are all enjoying fall and having a good time!

Kindergarten, No Hearing Aids Yet, Pictures

Julianna started kindergarten on Tuesday!! It was a big day for both of us. She was excited and I was nervous and sad that she is growing up so quickly. My little 3 pound baby is with all the big kids now. She did say some of the kids said she looked like she was three and that made her sad. I told her to please remember that Uncle Rich was made fun of for being small and now he is the tallest person she knows. Kids can be mean. I hope she learns to let it all roll off.

Jack was supposed to get his hearing aids yesterday. I took the day off for the appointment. About two hours before the appointment they called me to say the hearing aids weren't in and I needed to reschedule the appointment. The lady there (LIJ) was pretty nasty as usual. After speaking to the supervisor I was able to get an evening appointment for next Wednesday. I hope it works out this time.

Here are some pictures:

Julianna ready for the first day of kindergarten.

Julianna getting on the bus. I followed in the car.

Jack at 9 months old. Super happy.

                                    View from our dock in PA. We are sorry to see summer end.