Saturday, October 30, 2010

Are You Kidding Me?

Jacob was admitted to Hasbro Children's Hospital on Thursday with... pneumonia. We will probably be discharged this afternoon or evening because he has been off oxygen and has been eating and drinking. We will begin a regimen at home of inhalers and antibiotics and I will be staying home to care for him. He cannot be exposed to his daycare environment because his lungs are susceptible to infection since battling the bacterial pneumonia a few weeks ago. Two hospitalizations within three weeks? I hope to never know what it is like to be a "frequent flier" because this is almost more than we can handle. Once again, if we didn't have our family to lean on we would be hit emotionally and financially. Hasbro is extremely family friendly. On our first day, a wagon came through with decorated pumpkins that were donated for the children at the hospital. It always makes me cry. You try to be so strong but can't help but be moved by the humanity of a simple gesture. The nursing staff is terrific and has welcomed my questions, willing to teach rather than tell me what is happening to our son. So we still have our eyes on December 22nd but have learned from our most recent experience to focus on treating him now and worrying about surgery later. It is what it is. There is no timeline for loving Jacob.

Saturday, October 23, 2010

Did I Mention?

Jacob is the happiest little boy in the world. I forget to mention this amidst all of my own misery. The Story of Jacob is told through my tired eyes and would be entirely different if it was told through his bright wide brown eyes. He only complains when he doesn't get his ice cream (a RARE occurrence) or when he has to sleep in his crib (he's been sleeping in our bed AGAIN) or when his diaper is being changed (the antibiotics he was taking caused diarrhea and a TERRIBLE diaper rash). I brought him to see his pediatrician on Monday, Wednesday, and Friday last week to check his lungs and his bottom. My miserable self is desperate for him to be HEALTHY. But he is happy.

Monday, October 18, 2010


At Jacob's 6-month well baby visit, I mentioned to his pediatrician as an afterthought that he didn't seem to be using his right hand. I thought that maybe it was because of how I placed the hanging toys in his activity gym. When she dangled her stethoscope over his right side, he made a weak attempt to bat at it so she felt that he was showing his "handedness" early and that if he continued to use only his left hand by the 9-month well baby visit, then there would be reason for concern. Within a few weeks, however, Jacob had his first Infantile Spasm and we learned why he was only using his left hand. Nothing would have changed had we known a few weeks earlier about Jacob's stroke. I'm so happy not to have known for so many months. But I said some really stupid things that I now regret. I remember my mother was over at our house and I was trying to engage Jacob with a rattle and he just kept looking away. I figured that Jacob might not be as intelligent as Matthew was at his age and said something about Jacob being a football player because of his gigantic size. I didn't realize that he was disengaged because of the electrical storm brewing in his head. And I didn't realize that he had a slight paralysis on the right side of his body.

Since then I have been vigilant. I'd rather drive myself crazy being proactive about Jacob's health than deal with the aftermath of a missed diagnosis. But this pneumonia caught me off guard. Like I posted before, he had just seen his pediatrician on September 30th. She was on vacation the following week so I brought Jacob to another pediatrician who had seen Jacob before on October 8th. Neither of them heard anything in his lungs. And then two days later, we end up in the hospital. I have a degree in microbiology and understand the rate of reproduction in bacteria but... by Sunday he had a moderate bacterial infection in his right lung and a mild ear infection in his left ear. The incidence of pneumonia in young children must be very low because it never crossed any of our minds. I thought that maybe he had contracted the flu from the 2010 Influenza Vaccine. And he may have although I will never be able to prove this. I need to have someone or something to blame... Jacob had a runny nose and a slight cough when he saw his pediatrician on the 30th. My father brought him for me but I had written a note about checking him for an ear infection and listening to his lungs for congestion because I knew that if he had an infection, it had to be treated right away if he was still going to be able to have surgery a few weeks later. I also asked whether he should receive his immunizations and vaccinations before surgery. My father said she spent a long time with him thoroughly checking him out and found no infection. Just a cold. She said that he should get all of his shots because then he would be protected while in the hospital following surgery. Jacob seemed to feel better over the weekend but then his nose started running again sometimes clear, sometimes yellow. He started to have diarrhea and his cough became more persistent. Finally, on Friday when I picked him up from daycare, his face was red hot and he had a fever of about 101. I took him that evening to the second pediatrician who again found no infection. Just a cold. And he prescribed an inhaler because he thought his cough sounded like a wheezing cough although he did not hear any wheezing in his lungs. I didn't want to give him the inhaler until I was able to speak with a nurse in the pre-operative department at Boston to be sure that he could have this medication prior to surgery. But by Sunday I had a nervous breakdown because Jacob's "cold" was getting worse. We decided to give him the inhaler because he was in no shape for surgery anyways. He hadn't really eaten since Friday afternoon and was coughing up any fluids that he drank. I wished that I had given him the inhaler right away. It may have relieved some of the coughing. It also may have masked the pneumonia. I don't really know but I do regret that I was so focused on the surgery. So back to the vaccine. Jacob received the live intranasal vaccine. It is not supposed to be given to children under two-years of age or children with a history of wheezing. I believe that Jacob may have contracted the flu virus from this which primed his lungs for the pneumococcus bacterium. This type of pneumonia is a complication of the flu.

Although I may sound bitter because I am, the moral of my story really is that neither doctors or mommies are always right although everyone is operating with the best intentions. Vigilance. Education. Advocacy. I have come to understand how important it is for me to be a part of Jacob's medical treatment rather than a bystander. My mantra while he was in the hospital was NO REGRETS. We had them swab Jacob for MRSA, we had them do a second X-ray, we had them draw blood a second time to check his white blood cell count, we had them draw blood a third time to check his anti-seizure medication level. There is a fine line between careful and crazy but it is a line that needs to be crossed.

Sunday, October 17, 2010

Good Better

Jacob's breathing sounds better today. I didn't have to give him a nebulizer treatment during the night so I hope the trend continues. He goes in for a follow-up appointment tomorrow morning to be sure that the pneumonia is clearing from his lungs. He's still tired and a little unsteady on his feet so he'll be home with me for a few more days before he goes back to school. We're going to Chuck E. Cheese today to have a faux birthday party for Matthew because he keeps asking when we're going to have Jacob's party. Jacob enjoyed his presents in the hospital and his cards at home so I don't think it really matters to him. I'm in the mood for low key. Just taking it easy until December. I go back to work on Wednesday. Surprise for my students who thought I would be out until November! Now I'll have a few months to plan for my next absence. Everything is as it should be. It's always hard to see a way out of the storm but with so many points of light in our family and friends, we find a safe place even when we're afraid.

Friday, October 15, 2010

Home at Last

Jacob came home from the hospital yesterday afternoon. He's on antibiotics and nebulizer treatments for the next ten days. We may have uncovered an underlying medical condition with this hospitalization. Jacob tends to become asthmatic every time he develops a respiratory infection, whether it's pneumonia or the common cold. I remember he had the cold (a cough) for three weeks once. This time he was coughing for about two weeks but he had been sick for almost three. We had taken him to see a pediatrician twice and even up until the Friday before his hospitalization, he was thought to have the cold virus. Anyways, when the lungs respond to infection, they secrete more mucous. Usually we are able to cough up the mucous and clear the infection. In Jacob's case, his lungs also respond by "tightening up" and he is unable to effectively clear the mucous so he continues to cough for weeks. With a bacterial infection, this just allows the bacteria to make a home in his lungs because it is moist, and warm, and dark. It's possible that Jacob's right sided weakness may also play a role in his inability to cough effectively - maybe a muscle weakness. So since everything happens as it should I have no problem with postponing the surgery, which by the way is scheduled for December 22nd to allow enough distance from the pneumonia and antibiotics. In the meantime, we will be making appointments with the pulmonary and immunology programs in Boston to get a handle on Jacob's condition prior to surgery. In just one year he has had 6 ear infections (some double), strep throat, and now pneumonia. He has never gotten well on his own because every cold turns into something else so he has always ended up being treated with antibiotics. Hopefully these appointments will give us some answers...

Sunday, October 10, 2010

The cold turned out to be pneumonia and Jacob was admitted to Newport Hospital for his birthday. My sister Allison had bought him an IV pole cover and a blanket for his surgery in Boston, which will be postponed. I don't know about Jacob but these gifts gave me some comfort today. Matthew was very upset that we didn't get to have a party for Jacob so we bought a cake on our way home and sang Happy Birthday. Matt is staying overnight with Jacob.

Saturday, October 9, 2010

Upper Respiratory Infection

The cold is one evil *#*!@. For Jacob's birthday tomorrow I am wishing for his nose to stop running and his cough to clear up. With surgery scheduled for Wednesday, they may postpone if he's sick. The next available date is November 24th!

Wednesday, October 6, 2010

The Story of Jacob

Matt and I were out to lunch when we had a discussion about when we would be ready to have another baby. We figured we would wait until August so that I would be able to go out on maternity leave at the end of the school year and then be home with the baby all summer. And then a few weeks later I was pregnant with Jacob in JANUARY? I was scared to tell Matt but we were both excited once we realized that I was really pregnant. I quit smoking for the second time and looked forward to being humongous, and I was. Everything has happened just the way it should. Jacob could have had a stroke earlier in the pregnancy and would have been born deformed or worse - he may not have been born at all. We could have missed the first spasm if we had put Jacob down while giving Matthew a bath, but we didn't. We could have dismissed the spasms if my father had not been taking care of Jacob and my stepmother hadn't insisted that we call his pediatrician. If there hadn't been another case of Infantile Spasms in her office a few weeks earlier, Jacob's pediatrician might not have immediately referred us to a neurologist. Jacob's neurologist didn't think that he would respond to the ACTH treatment, but he did. I insisted that Jacob was continuing to have seizures and even though a 72-hour EEG showed no seizure activity, Jacob's neurologist put him on phenobarbitol and the seizures stopped for a short time. I kept insisting that he was having seizures again and after a 6-hour EEG, it was confirmed. Jacob's medication changed to Depakote and after adjusting his dose three times, we asked for a neurosurgical consult. If Jacob's brain had not been so malformed, he would never have been considered for surgery. Jacob's neurologist had said back in the beginning that we might have to consider surgery down the road because the malformed brain tissue was not doing anything good for him. This sat in my mind for all of these months. I knew it was inevitable. Every thought and every action has been about planning for the future while staying grounded in the present. The present is just as it should be. Jacob doesn't know. He uses the sound "be-be" for baby and binky and beep beep and as long as we are in his context he is communicating with us. He waves good-bye and blows kisses to dada in the morning and and asks for "ay" every afternoon (ice cream). As his neurologist said, he has progressed in spite of his brain malformation. I can't even imagine what his life will be like once the naughty brain tissue is behind us. One week to go. I am sure about the surgery but stay up all night thinking about it. I know some of my anxiety is about the risks but I think most of it is about taking care of Jacob after surgery. I feel like I have been able to make things happen for him in terms of therapy and daycare and life in general but the healing process is something that his little body will have to do on its own. I have no control over this. There is no one I can call to raise hell with, no emails to send, no calendar to refer to. No plan. So I have to believe that everything will happen as it should.