Not The Trip We Planned For...

We had planned to spend the last 10 days soaking up the sun and relaxing on a sunny beach in Hawaii -- a trip we had planned for months. Well, plans changed (dramatically) and instead our family got a "trip" to the ER, followed by a 7-day hospital stay at Children's Hospital. Here's a little glimpse at the last 10 days or so...

Tuesday, Feb. 7th - All packed and ready to go to Hawaii on Wednesday...just one last stop at the doctor's office. Jake had caught a cold a couple days prior and we wanted to play it safe and make sure he was still okay to fly (i.e. no ear infection), so Josh took Jake to see his pediatrician. At 3:00, I received a phone call from Jake's doctor saying that she felt we should postpone our trip since Jake had a fever and given his medical history, we didn't want to take any risks. We were pretty frazzled by the change and a bit emotional because we REALLY needed a vacation! We felt that Jake would be better in a few days, so we re-arranged travel plans to leave on Saturday instead and just cut our trip short a few days.

Thursday, Feb. 9th - Jake was doing worse -- lethargic, feverish and refusing to eat. We were getting worried, so I called his pediatrician's office to schedule an appointment for the first thing Friday morning.

Friday, Feb. 10th - We took Jake to see his pediatrician and were alarmed to hear that he was having labored breathing. The office staff gave him a breathing treatment and Jake actually fell asleep during the 10 minute treatment. He was just so exhausted from not sleeping well the past few nights. The breathing treatment didn't help his breathing much, so we were told to take him to the ER to get evaluated. Once in the ER, the nurses promptly put him on oxygen and took some lab tests (blood and urine). The labs revealed that he had a respiratory syncytial virus (RSV), which is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups. Jake just happens to be both young and at higher-risk for developing respiratory infections due to his Niemann-Pick disease. After several hours in the ER, Jacob was finally admitted to the 4th floor nursery and was put on continuous oxygen, IV fluids and regular breathing treatments every 3 hours. Needless to say, we cancelled our Hawaii trip : (

Jacob was very sick all weekend and had a lot of difficulty sleeping. When Jake was awake you could tell he just felt so sick and couldn't get comfortable. As a parent, it is very concerning to see your child so sick to the point that they can't even be comforted. We had be warned about the increased risk of respiratory infections, but we had no idea what that truly meant. It was a tough weekend for all of us! Fast forward a few days...

Feeling soooo sick..."Ele" his elephant was the only thing that seemed to comfort him 

Fever starting to subside

Monday, Feb. 13th - Going on six days with a fever, the doctors decided to run some more lab tests on Jacob to determine if he had developed a secondary infection. His chest x-ray came back clear and so did the blood work, so they checked his ears again and discovered an ear infection (actually good news). The doctors immediately started him on antibiotics and asked if they could administer Tylenol instead of Motrin to help with the fever. Being the concerned parent that I am, I contacted his specialist at Mt. Sinai in New York to see if it would be okay to offer him Tylenol, knowing that Tylenol is processed through the liver, we were holding off in order to give his body a break, but she indicated it would be okay to alternate doses of Motrin and Tylenol. Within several hours of antibiotics his fever was gone!!! 

Tuesday, Feb. 14th -  Josh caught some stomach virus, so I quickly sent him home that morning in fear that Jacob might get another virus on top of the one he already had. We just couldn't risk it. I should also add that I had also succumbed to Jacob's cold a few days prior and was miserable with a head cold during his hospital stay. This probably goes down in the history of the WORST Valentine's Day ever! The only good part of the day was when the doctors finally were able to take Jacob completely off the oxygen!!

Balloons from Daddy

Wednesday, Feb. 15th - No more fever and off oxygen! I even got Jake to smile, which he hadn't done in six days!! Jake was still incredibly weak and had lost some weight, so our mission was to get him off IV fluids and eating again. This feat would take two more days as he was very slow to want to eat again. I think he was paranoid that we were trying to give him more of the pain medicine that he hated so much!

Friday, Feb. 17th - Finally discharged from the hospital!!! I think if we had to spend one more day there, we would have gone AWOL! Believe me when I say, that we practically ran out of the hospital. It has never felt so good to be home in our own beds and resting with our little man!

We spent most of this weekend resting and getting situated back at home. Although it really sucks to have to unpack from a vacation that we didn't get to go on, we are truly happy to have Jacob back at home and on the mend. It will probably take Jacob a few weeks to get back to his normal self, but we're confident that he'll make a full recovery. 

This was an incredibly scary and exhausting week for our family. We were faced with the harsh reality of how susceptible Jacob is to common colds and how fragile he is in fighting them off. At the same time, we are being forced to come to grips with the battle that we, as a family, are going to have to fight in order to ward off this disease for as long as possible!

Special thanks for all the meals, phone calls and texts that helped to keep us sane throughout this past week! We love you all so much!!