After much debate by the doctors on Tuesday, we were sent home at 6:30 p.m. Before being discharged they set Nicolas up with portable oxygen and the Respiratory Therapist trained me to pat his chest in certain areas to help break up the congestion. Nicolas did fine on the way home and seems to be doing fine here at home. If for any reason things seem worse we are to return to Riley. Nicolas will stay on oxygen 24 hours a day for three weeks. Then he has an appointment for an overnight sleep study at the Clarion North location. That will tell us whether or not he still needs to be on oxygen and whether or not he needs his tonsils/adenoids taken out. He might need them taken out because if he is floppy on the outside then he may be floppy on the inside and those may be obstructing his breathing. We will find out the results at an appointment with the Pulmonologist on Monday following the sleep study.
Well on Friday while we were visiting with our developmental Ped doctor she felt Nicolas' breathing seemed labored due to his congestion. After hooking him up to an oximeter (that measures the oxygen carried by the hemoglobin) we found out it was a little low. It should be between 98 and 100...He was dipping between 88 and 92. Our doctor felt we needed to go to the Riley emergency room for further investigation...i.e blood work, chest x-ray, urine test, throat culture, etc. Well the doctors there felt that we needed to stay overnight for observation and breathing treatments. Once checked into a private room. The doctors informed me that this is viral so we should stop giving the antibiotic and the steroid that was prescribed on Wednesday. He does not have RSV or pneumonia...but it is in his chest...and because Nicolas has difficulty moving it around (coughing, sneezing, swallowing) it could get worse. Colds (whether his immune system is good or not) are not going to be easy on Nicolas ever...and should not be overlooked. Since his oxygen was a little low they warned me that he may have to be put on oxygen...and if he does that would buy us another night at Riley. Well it wasn't 20 minutes after they said that and he was put on oxygen. So Garrett and Jake stayed home Friday...they went bowling and caught a movie (Mall Cop). My friend Sara came to visit and we ended up ordering Chinese together before she went home...On Saturday Jake and Garrett packed their bags and headed down to Indy to visit and stay the night. We played Monopoly, watched Kung Fu Panda, and had dinner before they went to the hotel to go swimming. They closed the pool down at 11 p.m. Then this morning they brought me breakfast and I went swimming with Garrett. This morning Nicolas was taken off oxygen but at 2:30 we found out we are going to stay another night. He had a few oxygen dips so they want to observe him longer off the oxygen to determine that when we go home tomorrow whether or not he will need oxygen at home. At 9 am tomorrow morning we will know if he does or doesn't...Riley will set that up for us. As for Jake and Garrett they just took off to try and catch the Big 10 Championship game...Garrett is pretty excited because Purdue is in it. Then they will be back in time for dinner with me...After that they will head home. Our nurses have been wonderful and we're hangin in there. Looking forward to going home tomorrow...but this hasn't been unbearable...We just want our little Nicolas to get better.
Yesterday I took Nicolas into see Dr. O'Brien for an immunization and instead of getting one Nicolas walked out with an antibiotic and Prednisolon (steroid). Nicolas always sounds congested but lately it has seemed worse and a couple of days ago we noticed that his secretions were starting to look yellowish. So we asked Dr. O'Brien to take a look...and he did hear some fluid in his lungs. Because of Nicolas' immune system and because he has difficultly moving that stuff around (i.e, coughing, sneezing, swallowing) Dr. O'Brien wanted to be aggressive with his treatment. So we added a couple meds and breathing treatments every 4 hours.
Today at 2, Nicolas will be getting his cool new hand splints with resting pans. I'll post a picture of them soon. Later this evening Nicolas and I will be headed down to Indy AGAIN to spend the night at a hotel. His first appointment is at 8:40 tomorrow and the last is at 11. So I should be home before Garrett gets off the bus.
Nicolas seems to like staying at hotels...pretty comfortable...check out the picture! It was taken during our stay on Monday. Dad picked up PF Changs AND Cheesecake Factory...My man is SOOOOO good to me! It was so yummy! That night Nicolas was pretty congested so none of us slept very well....I think I woke up every two hours to suction his nose and throat. The Dr. Walsh appointment went well. We plan to make a post sometime next week with all the information from this weeks Riley visits...so watch for it.
Until then please keep us in your thoughts and prayers...especially little Nicolas...we hope he gets over this cold quickly!
Originally we were supposed to see Dr. Walsh on Friday the 13th, but due to a scheduling conflict they moved our appointment with him to Tuesday the 10th at 8 a.m. Because this is so early Jake and I will head down to Indy Monday night. We will be driving separate because Jake has an appointment early afternoon in Fort Wayne that he cannot miss...so he may need to head home without me if the appointment takes a while. We are on a waiting list to get our other appointments on the 13th bumped up to Monday...but they're booked solid...SO if there is no cancellation it looks like we will head down to Riley again on Friday for the Developmental Peds and Opthamology appointments. This week (starting Wednesday) we will begin another round of immunizations for Nicolas. We will go twice a week until caught up. So far it is shaping up to be a busy week! I'll let you know what we hear from Riley as soon as possible!
If this is your first time reading our blog, here are a few things you may need to know...
This blog page is dedicated to informing our loved ones about our little Nicolas. It all began February 19th 2008. He was born a mere 6 lbs. 2 oz. and within 3 days dropped to 5 lbs. 8 oz. Initially Nicolas was diagnosed with Failure to Thrive and Reflux along with aspirating. He had a surgery at 7 weeks old to correct the reflux. They added a feeding tube at that time to prevent aspirating and improve weight gain as well. Once we checked out of Parkview North we began to see many specialists at Riley Children's Hospital in Indianapolis. After a few trips to Riley and several EEG's later he was diagnosed with Infantile Spasms...something he had been going through since 3 weeks old but was not diagnosed with until he was 6 months old. To try to rid Nicolas of these seizures, Jake and I gave him an inner muscular shot of a hormone steroid called ACTH. This medication dramatically improved his spasms to less than 1 a day. Before that, he would have 8-10 spasms a day. Due to the ACTH medication his immune system was affected and won't be back to normal until June of 2009. As of December 2008, Nicolas' MRI reported that he has a moderate thinning of the white matter that surrounds his brain which attributes to his delays in development. Doctors feel that all of Nicolas' symptoms are due to an underlying cause. Nicolas has gone through a great deal of tests in search of a cause and they have yet to determine what it is. Today Nicolas' weight and height are lining up with growth charts and his seizures are few. Through all of this, you wouldn't think anything has changed for our family. Not that this doesn't weigh heavy on us...it is challenging being patient with medical professionals and with a diagnosis. But through it all...we are so glad God gave him to us! We think he is incredible and love him dearly! With that I leave you this...read our blog so that you too can know more about Nicolas and our journey with him. Continue to pray for our family! Love, The Steins