Jack Had RSV, Pretty Scary

I picked Jack up at daycare on Thursday and his teacher said he was very tired and didn't want his bottle. I took one look at him and realized it was because his breathing was so bad. I gave him two treatments and my friend Maddy drove to the hospital with me, Julianna and Jack in the back. She dropped me and Jack off and was kind enough to keep Julianna overnight for me.

 Jack's O2 saturation was 88 but quickly dropped to the low 80's. They gave him 5 treatments back to back, IV steroids and admitted him. He still had nasal flaring and retractions and his wheezing was really bad. They were pretty worried because he did not seem to be responding to treatment but he finally started to. He had breathing treatments every three hours for a little over two days. They cultured him and he was positive for RSV.

 On the third day when the pulmonology fellow saw him she said there was no way he could be discharged. When I saw Jack's pulmonologist she said she would discharge him provided I slept next to him (I do anyway to hear his breathing, not in same bed), gave him treatments every four hours, gave him the oral steroids, take him back to pediatrician and pulmonologist and come back to the ER at the slightest sign of any problem. Of course I have no problem with those things.
 What is RSV and why is it such a big deal in preemies?
RSV 101: What Every NICU Parent Needs to Know For most infants, respiratory syncytial (sin-SISH-uhl) virus (RSV) causes an illness like a common cold in the upper and lower respiratory tracts. But some babies, including those born preterm and those with special health care needs, may be at high risk for a severe infection which can cause pneumonia or bronchiolitis, inflammation of the small airways in the lung. These conditions can lead to serious complications, re-hospitalization and in some cases, death. According to the Institute of Allergy and Infectious Diseases, 75,000 to 125,000 children in the United States are admitted to the hospital for RSV infections each year. Fortunately, education about the virus and prevention steps can help you reduce your child’s risk.
Is Your Baby or Young Child at Risk?
A preemie may appear healthy, yet still have injured lungs. Chronic Lung Disease (CLD) is the result of a baby’s lungs getting irritated or inflamed. Babies may need a machine called a ventilator to help them breathe. Pressure from a ventilator can sometimes irritate the fragile lungs of these babies, which can cause CLD. CLD may also develop in babies who have received high levels of oxygen for a long time or have had pneumonia. Because their lungs are not normal and may still be healing, babies with CLD are at increased risk for severe RSV disease.
  How Early Was Your Preemie?
If your baby was born at 28 weeks or earlier…Your baby may not have received all the virus-fighting substances, called antibodies, from mom. Also, babies born at 28 weeks may have small, underdeveloped, and narrow airways for breathing. This puts them at high risk for severe RSV disease.
If your baby was born at 29-31 weeks…A bad lung infection can cause clogged airways and serious breathing problems that might lead to hospitalization.
If your baby was born at 32-35 weeks…and is 6 months or younger at the start of RSV season, he or she is considered to be at high risk for severe RSV disease.
If your baby was born at 36 weeks or later…Most full-term babies get a mild form of RSV disease. Symptoms and Diagnosis
An RSV infection usually causes moderate-to-severe cold symptoms in the upper and/or lower respiratory tract. In young infants, the symptoms may be less obvious. According to the American Lung Association, “In very young infants, the only symptoms may be irritability, decreased activity, and breathing difficulties.”
Coughing, sneezing or wheezing that does not stop Stuffy or runny nose Fast breathing or gasping for breath Spread-out nostrils and/or a caved-in chest when trying to breathe A bluish color around the mouth or fingernails A fever (in infants under 3 months of age, a fever greater than 100.4°F rectal is a cause for concern) Mild sore throat Lower appetite Trouble sleeping For diagnosis, your baby’s physician may test a nasal swab for evidence of the virus. A chest X-ray and/or oxygen saturation test may also be done to check for lung congestion.
 Treatment As with many viruses, once the diagnosis is confirmed treatment is limited to managing symptoms. Less severe cases may receive medicine to reduce fever or medicine delivered via a nebulizer, which converts medicine to an easily-inhaled mist to assist the lungs during an infection. Fluids are often recommended especially for young children and infants to prevent dehydration. A bulb syringe can be used to suction mucus from nasal airways in infants. If your child has severe form of RSV, he or she may need to be hospitalized and treated with oxygen, have mucus suctioned from the airways or be placed on a ventilator to assist with breathing. Often hospitalization lasts a few days with most children recovering within one to two weeks.
Prevention RSV spreads just like a common-cold virus. According to the CDC, “people infected with RSV are usually contagious for 3 to 8 days. However, some infants and people with weakened immune systems can be contagious for as long as 4 weeks.” Because contracting RSV does not give protection from future infections, your child can get RSV multiple times—even during a single season. The first infection is usually the most severe with subsequent infections generally having milder symptoms. Taking a few extra precautions around your family and friends can help protect your baby and young child during RSV season.
Wash your hands thoroughly before touching your baby, and ask others to do the same. Cover your coughs or sneezes and show siblings how to practice good hygiene. Don’t let anyone smoke in your home or near your baby or child. Wash your baby’s toys, clothes and bedding often. Don’t share eating utensils and cups with one another. Consider regularly disinfecting high-traffic hard surfaces such as door knobs. Keep your baby away or limit exposure to crowds, young children and anyone with colds. Talk to your pediatrician about palivizumab (Synagis®) shots during RSV season. Preventative Injections Palivizumab (Synagis®) is the only FDA-approved medication to help protect high-risk babies from severe RSV disease. Even though it is given as a shot by your healthcare provider, it’s not a vaccine because it works differently. Each shot, which is given monthly during RSV season, provides a dose of virus-fighting substances called antibodies that help prevent severe RSV disease from infecting your baby’s lungs.
“RSV is one viral illness that actually can be prevented with adequate prophylaxis,” said Dr. Sarmistha B. Hauger, Director, Pediatric Infectious Disease, ‘Specially For Children, Dell Children’s Medical Center. “Babies who fit into the high risk criteria and are born at the time that RSV may be circulating in a community should be identified quickly, and begun on a regimen of monthly injections of palivizumab (Synagis®). This antibody is extremely effectiveat preventing serious illness secondary to RSV,” she said.
Preemies are often born before getting enough antibodies from their mothers to help fight RSV and other viruses. Preemies are also at greater risk for severe RSV disease because their lungs are less developed and their airways are narrower than those of full-term babies. Synagis® helps preemies by providing more infection-fighting antibodies to help protect their vulnerable lungs from RSV. The shots are effective for about a month, which why it′s important to get every single shot on schedule during RSV season.
   Jack was approved for the Synagis vaccine and he does get it. He did not get it in December due to complications from his cochlear implant surgery. He did get the shot right before we left the hospital.
He is a sweet little guy and all the nurses loved his little smile. He has been doing a lot better the last few days. The pediatrician was happy about how he sounded but he still needs multiple breathing treatments each day and he is still on the oral and inhaled steroids. It seems like it is always crazy around here.

Jack's Cochlear Implants Are Activated!

It was a tough few weeks after the surgery. Jack had projectile vomiting, heavy bleeding from both ears and pretty serious balance issues. They said the vomiting and the balance issues are from the trauma to the middle ear. The bleeding seemed much heavier than it would be for the average cochlear implant patient because Jack has ear tubes so blood and fluid were readily able to drain out.
He still has slight balance issues but it has gotten much better. He can sit again now and he is not falling over anymore. I am pretty happy about that because we had so much therapy to get him to be able to sit so I was worried that we had lost it all, but he is getting it back again.
We set off for NYU for the activation with a pretty big blizzard on its way. I called to try to change the appointment but I would have had to wait 6 weeks and I didn't want to do that. We were supposed to have an appointment on Thursday and then another on Friday. They said they could squeeze it all in so that we could skip the Friday appointment.
We took the train in and they saw us pretty quickly. They showed me how to work the equipment. There is a lot to know. They showed me how to test it, assemble it, put it into the dehumidifier unit each night, change the volume, change the program set up, put it on his head, clip it on or use the harness, etc, etc. Finally we put it all on him and he responded to sound. I videotaped it but they told me I was not allowed to post it publicly.
They made all different kinds of noises to measure his responses. I think it was a bit overwhelming for him. Really I just wanted to say "hi Jack!! Mommy loves you!!!". I know he wouldn't understand it but I would have liked it to be just us.
They had two giant boxes of equipment for me and a big bag. I took the train and had the stroller. We packed what we could into the stroller and I left the rest for out next appointment which is on Friday January 10th. She packed up the processors for me to put in my backpack and then told me to be careful of them because they are worth over $20,000. And to think I was worried about someone stealing my ipad in the train station!
I walked back to the Penn Station and made it home before the blizzard started. Both Jack and I were tired and we all went to bed pretty early.
Julianna had no school today due to the snow. I put the processors on Jack and was able to talk to him here in our house with no one else. It was great. I videotaped a very short amount of it.
I have been told that, if hearing is a computer, Jack now has the hardware. The therapy he will receive over the next 3 - 5 years will give him the software. He really has to learn to hear with the implants. Right now he is being assaulted by the sound a bit. We all learn to tune out extraneous sound. For instance, we don't hear lights buzzing or routine traffic noise because we have learned to tune it out. We do that from birth. Jack has not learned how to do that because he hasn't heard since shortly after birth. So he has to learn how to tune out noise and how to make meaning from the sound. Also, Jack is hearing electronically and that is not how we normally hear. Most of the kids who get cochlear implants as early as Jack did do very well. They tend to be mainstreamed and attend regular school as early as kindergarten. I don't plan to tell Jack that he has any type of disability, just that he might have to work a little harder than most kids, so I am hoping he will excel. He is also going to have a lot of therapy to help him along.
Thanks for all the help and prayers!!! Here is Jack hearing! It is short but sweet!

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.