Some Bumps In Jack's Road

Jack has started to feel a bit better and the bleeding from his ears has almost stopped. I did notice another problem though. His balance is completely off. He has been falling over to his left side. I had him sitting on the floor. He is really good at sitting unassisted, or at least he was. He can't even get enough balance to sit for a few seconds. He just tilts to the left and goes over. I had him in the bath ring, couldn't do it. In the exersaucer he sat in the seat bit had to hold on to an attached toy to keep from falling over.
I looked it up and it says that balance can be affected by the cochlear implant surgery, especially if both sides are implanted at once. I did call the doctor's office and I am waiting for a call back. We have a follow up appointment on Friday.
I am really hoping that this is just a temporary thing and that there was not some kind of damage done to his vestibular system. I am thinking that it could be that it is super swollen in there or that his ear tube on that side is clogged.
Jack is going through everything with his ears and at the same time his two front teeth are breaking through. I feel like this little guy can't catch a break. I have been staying home with him but I am hoping to go back to work tomorrow. We shall see.

Jack Is Getting Through It

Jack is going through a tough time. His ears are draining tons of bloody drainage. It is freaking Julianna out. It occurred to me that she is not likely to follow in my career footsteps. LOL.
Dr. Roland told me that Jack's head may swell considerably. He said it may swell so much that his ears may stick out. Well, that is what is happening. His ears are sticking out about as far as they possibly can. That really started last night as the swelling progressed. He has also vomited a few times, but his appetite does not seem to have diminished.
He has been having trouble sleeping and it seems like he can't get comfortable. His only pain meds are tylenol and advil. He still does seem to be pretty smiley when he sees me or Julianna.
They told me that most kids go back to their regular activities after about a week. It has only been a few days but right now I can't see how this will all have cleared up in a few more days. Maybe, but it seems unlikely to me.
We have been stuck in the house for a few days and it is starting to get a bit old. It snowed today so it was unlikely we would go out and do much anyway. If he is feeling better tomorrow we will try to go do something, even if it is just to go to the grocery store.
I am hoping that his swelling will go down soon and he will start to feel better. We are supposed to have his cochlear implants activated the first week of January. I am hoping all the swelling will be gone by then. :)

Surgery Over - Jack Is A Tough Little Guy

The surgery is over and we are home. Jack did great!!
I dropped Julianna off at my friend's house at 5 am. I then went to pick up my friend Cathy who was kind enough to accompany me to NYU for Jack's surgery. We parked at about 6:15 and made it to the sign in area by 6:30, just when we were supposed to be there.
All the paperwork went smoothly. Each doctor came in to speak to me before the procedure. I explained Jack's lung issues to the anesthesiologist. She said she would get some extra things set up in case he had any problems. Dr. Roland came in and he told us it should take about 2 1/2 hours in the operating room. He said the actual procedure would be about 45 minutes per ear.
Almost exactly 2 1/2 hours later Dr. Roland came out to speak to me. He said Jack did well, but he did have some breathing issues during the surgery. His oxygen saturation dropped significantly at one point and the anesthesiologist gave him an albuterol treatment. He responded positively to that and they were able to keep going. They did not have trouble extubating him.
I saw him in recovery pretty quickly. He had some blow by oxygen but he was still sleeping. He had a huge bandage on his head. When he starting waking up we gave him a small bottle of water, then diluted juice and finally formula. He was obviously in pain and they wanted to give him fentanyl. I asked if we could try him on tylenol first. They finally agreed and he fell asleep shortly after the tylenol.
We left NYU a little before 2 pm. I made it home in time for the school bus. Julianna was happy to see me and Jack but she was also pretty happy that my frind's college age daughter would be taking her to ice skating. She also took her to school in the morning and helped her with the kindergarten Christmas project, a milk carton and graham cracker gingerbread house. I was supposed to go with her but I could not because of Jack's surgery. They were allowed to bring another special person if a parent couldn't go. I was a little worried about not attending this, but she seemed to have a great time.
Jack had a bit of a restless night. He had significant bleeding and his bandage was soaked through by the morning. Dr. Roland told me to expect this. He also said Jack would have a lot of bloody drainage because he has the tubes in his ears and they allow more drainage out. I took the bandage off this morning (as directed) and I was amazed to see that the incision lines are barely noticeable. They are behind his ears and there are no sutures. Dr. Roland told me he was closing it all from behind and there would only be two absorbing stitches. I am not sure how they do this, but it is pretty amazing. His head does look a little swollen. His body does not look too swollen today, but it did yesterday. They gave him some steroids just before the surgery (for his lungs) and that made him pretty puffy.
I am glad the surgery is over. We will be going for activation in the beginning of January. Thanks for all the good thoughts, prayer and assistance!!!

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!!