RSV- the very long story of an illness with a very short name.

Catcher is sleeping peacefully, somehow though, sleep for him is a little scary for me. Last week on about sunday i started to notice that the "cold" Catcher had caught from his sisters seemed a little worse for him, which didn't really surprise me. So i continued to watch and by monday i was feeling like he was working a little too hard to breathe, so later that day i took him and Katie to the hospital as she was wheezing a bit from all the coughing too. The dr was more concerned about Katie than Catcher, he listened to Catcher's breathing and because he didn't have any wheezing the dr just said he was fine. Well I, as a mother, did not agree with his opinion. After knowing what my baby's "normal" behavior was for several weeks now, it was obvious to me that his behavior was anything but normal and that he was struggling to breathe no matter what you could or could not hear in his lungs. So in the middle of the night i finally decided to just take Catcher to the ER, i wanted a chest x-ray and an RSV test. For those who don't know, RSV is what most of us have when we get a bad cold, the kind that makes you cough a lot. And for most kids over age 3 and adults, that's all it is, a bad cold. But for babies or kids who have lung issues already (like Katie) it can be much more serious, even deadly. And in my gut i just knew that's what Katie and Catcher both were dealing with.

At the ER they basically just humored me. I mean they really didn't think there was much wrong with Catcher, he didn't really look sick and of course, they couldn't hear anything in his breathing that had them worried. Then after the x-ray they told me it probably wasn't RSV because the x-ray was clear. But i pushed so they tested for it anyway. The dr was pretty much ready to just send us home when the RSV test came back positive. You could have knocked that dr over with a feather at that point. Then he didn't really know what to do, RSV in a baby who was a preemie and not only a preemie, but a preemie who's only issue at birth was immature lungs...it was a given that this baby with RSV was most definitely going to get worse. But he wasn't worse yet. So we talked about options. I could have the baby admitted to be watched to see if/when he got worse. or they could order a nebulizer to do breathing treatments at home that they thought would help and just go home. After thinking about it for a little bit, i decided to go ahead and let them order the nebulizer and just go home. The nebulizer was supposed to arrive within four hours of discharge from the hospital....yeah right!! I waited and waited and waited the rest of the day, it never came.

By late tuesday evening i felt like his breathing was getting worse and the nebulizer which should have helped had still not come. So we went back to the ER and this time they admitted him to the hospital. His breathing was fast and his oxygenation was low, a clear sign he was in distress. I felt bad for having left earlier in the day when i probably should have just stayed. When they found out the nebulizer never arrived i can't tell you how mad the dr was! This could have been a life or death situation, this machine is to help breathing, a rather important function of the human body!! So they ordered it again, figuring he'd probably only be in the hospital a day or two and then go home with the nebulizer. Well yet again, it didn't arrive....and yet again, very angry dr's! In the meantime they put Catcher on oxygen to help relieve his stressed lungs. Unfortunately it only helped a little, no matter how high they had it. All day wednesday they continued to try to relax his breathing, and nothing was working. By thursday Catcher was practically panting, breathing so fast he was at danger of really causing some damage. Even the monitor showed he was oxygenating his blood at 95-100% (perfect) an arterial blood gas test showed otherwise. Then as Catcher would fall asleep and relax, his respirations would get more and more shallow until on several ocassions he just stopped breathing altogether. That was when things started to escalate and the Modesto Kaiser hospital where we were staying basically finally gave up, and decided to send him to Kaiser Santa Clara, where there was a pediatric ICU. They really weren't prepared for the level of care he was needing. They arranged for a transport and then we had to wait.

During the waiting time i tried to run home and shower and grab a few things to take with me to Santa Clara and also we had Adam and his dad give Catcher a blessing. The blessing ended up being right before the ambulance arrived to pick him up and things got a little crazy at that point. Signing papers getting the baby settled on the gurney, and just having to say goodbye to Adam not knowing when we'd be back. On the ambulance ride, i rode in the front seat so i didn't get to be close to Catcher and i kept turning around to remind them not to let him fall asleep, because that's when he would stop breathing....i was so scared, i mean i know they were prepared for anything but i hated not being right next to him to watch him personally.

When we arrived in Santa Clara it was around 11 at night i think, many of the days seemed to run together and the only thing i'm entirely sure of is that it was late and i was tired. The nurses who had been riding in the back with Catcher said they thought the ambulance ride must have been all he needed because he slept most of the ride and was breathing almost normal. Ok at this point you could have knocked ME over with a feather...how could one ride in the ambulance have changed his status so much?! Then i realized, it wasn't the ambulance ride at all, it was the blessing he recieved right before the ambulance ride. At that point i felt comfortable that he was going to get better.

They place him in pediatric ICU but by this point they really didn't feel he needed as much care as they had originally expected. he was on oxygen to support his breathing and had an IV because his appetite was low from being sick...that was pretty much it. Otherwise he just slept. When he woke, i fed him, then i would just lay him back down and he was either lay there and look around or just go to sleep, he was the easiest kid i've ever had in the hospital. withing a few days they sent him to the regular pediatric unit instead of ICU.

By this point i'd been spending so much time in the hospital, but i really needed a better place to sleep and a laundry facility to wash the one pair of clothes i had other than what i was wearing. Kaiser Santa Clara is a very large hospital and aside from the pediatric intensive care unit (icu) they also had a cancer treatment center, so a lot of times families of patients were there for extended periods and just for those families they had a house called JW House. JW House was built by the family of a child who died of cancer, named JW. This house was amazing. You had to be referred there by the hospital social worker and whether or not you got a room was based on how far you were from home and severitiy of the person you were staying with in the hospital. Well they put me at the top of a very long list because we were so far away and Catcher was in ICU when the referral was submitted. They told me that until a room became available that i could use all other parts of their facility. This included free laundry (and free laundry detergent) and a HUGE kitchen, fully stocked with food. They made brownies fresh every morning and most nights a large dinner was provided. There were serenity gardens throughout as a place to meditate or pray for your loved one in the hospital. The common room had 100's of movies and even a Wii and direct tv satellite. There was a day use room for people who hadn't gotten their own room yet and if you were on the waiting list you could come and use the day use room each day. The day use room had a shower and furniture to relax on, you couldn't stay there all day, but at least a few hours there would make you feel better after days in a hospital room sleeping in a chair. Saturday though they called and told me a room was available for me.

The room was like a five star hotel! Not only did the house have a huge stocked kitchen, but my room had it's own kitchen too! I also had a private patio area and the most comfortable bed and pillows i had ever slept on! The sheets weren't cheap like most hotel sheets are, these were high thread counts soft plush sheets. I tell you every time i slept there, the moment my head hit that pillow, i was out. i always had to make sure to set an alarm otherwise i probably could have slept forever there! I really only slept there for about five hours at night, i would let the nurses feed him a bottle of breastmilk i'd pumped so i could sleep more than two hours which is all i would get between feedings otherwise. The JW House probably saved my sanity, i'm not sure how i would have made it through without there kindness and well of course their brownies :) The cost there was only $30 a night which is cheaper than any hotel i know of, and it was right next to the hospital so i could walk easily back and forth. Plus i think they had a program for sponsoring your stay if you couldn't afford it. I only stayed two nights, two very comfortable nights.

Monday afternoon the dr's told me they were going to transfer him back to modesto which was a little frustrating. My dad had brought me his truck to have a vehicle while i was there, and i was figuring i would be driving Catcher home when he was done. Instead i would have to follow him in an ambulance ride....that would not be fun. The reason i had my dad's truck instead of our spare car (the black camry) was quite a sad story. Adam wanted to bring me the camry on friday, the day after we'd been transferred to santa clara, so he got new tires on it and had an oil change, so it would be good and ready for a fair bit of driving. He had Matt follow him to give him a ride home after leaving me the car, well after all the money he put into it, while driving on the freeway at 70 miles per hour, the engine seized up and DIED! Dead, gone, caput, right there in the middle of the freeway. Poor Husband Man, he couldn't stop saying, "if only it had been before all the money i just put into it!!" We'd known for while we were on borrowed time with that car, the engine was diagnosed with a pretty serious problem at least 5 years ago where they told us it would only last about another year and it's lasted four more so hey, it did better than expected, and to be honest, i'm glad it happened then, rather than when i would be driving home....that would have been very scary for me.

In the meantime, while we were waiting to hear if Modesto Kaiser had a room available, i had asked the dr to give Catcher tylenol, his coughing sounded sooo painful, i know when i cough that hard it hurts. The dr said it wouldn't really help, it wasn't a cough syrup or anything, there isn't much of anything they can do for a tiny baby's cough. But i persisted and they relented and decided to give him tylenol. Then i had to talk the nurse into it as well, he kept saying that tylenol doesn't help babies with RSV so why bother. Again, i persisted and he gave in, and gave Catcher tylenol. The next feeding was about an hour after that and when Catcher woke up to eat he was like a whole new baby. All of his normal behaviors were back and....NO COUGH! he still coughed once or twice, little coughs, but nothing like he had been doing before where he coughed so long and hard he could hardly breathe. The medical staff was shocked! they could not believe that tylenol had made that much of a difference. I feel it was an inspiration from Heavenly Father that made me continue to push for tylenol. Then since it helped so much with most of his symptoms i decided to try taking off his oxygen. He had been weaned down to .1 litres which is the lowest you can possibly go so i just took it out of his nose and set it on top of his nose so if he needed it again it would be easy to put right back in. Well while his saturation dropped a bit, it stabilized at a safe number and stayed there. I told the nurse and she said we would just continue to watch him while we waited to find out about transfer back to modesto.

Several hours later the head of pediatrics came him, she said she'd been watching Catcher's monitors and felt that maybe he should just go home instead of transferred to the modesto Kaiser. Oh i could have hugged her!! We had been in the hospital for six days, and i really felt like since he didn't need oxygen anymore that there really wasn't anything left for them to do....and she agreed! So Monday evening we were released to go home, i got to take little Catcher and drive home in the truck, like i had hoped. We even had great traffic the whole way.

If you made it to the end of this blog, good for you, i write this mostly for me so i don't forget, i know it's more than most would want to read, but it's my life, and if i don't write it down sometimes the details get forgotten. It's the little things that make life worthwhile. The hand of God has been ever present in our lives, his fingerprints are hard to miss.