Phew

Phew...what a busy few days. Let's see here, where did we leave off? Last I was on we were praying Luke's leg would start to look better with the new antibiotics. I can't say if the meds did or if the Lidocaine on his leg did most of the work. Well on Tuesday morning the surgeon came in to check on Luke at 6:30 am and we were pleased to see that his leg was ready to be drained. The Lidocaine drew all the fluid (puss) to the surface. His leg looked like a water blister. It might not sound great, but I was wonderful for Luke. The surgeon was able to relieve Luke without taking him to the OR and putting Luke under sedation. This was our biggest worry due to Luke's lung issues. I will skip the glory of the draining, but they were able to clear out 2-3 tablespoons worth of infection. Pretty much instantly Luke seemed to feel better. The antibiotics did enough the next 24 hours that we were able to head home on Wednesday afternoon. I don't know about Luke, but I was sooo happy to be in my own bed instead of a reclining chair.

I had such high hopes that Luke would be able to sleep without the swing now since he did it for 4 nights. I was however, disappointed. We are back to the goofy sleeping habits that Luke has. He won't go to sleep till late. I think he just might like late night television. His favorite must be Craig Ferguson, since we always catch that one.

Today we went back to the pediatrician for a follow up from the hospital. He was happy with how things are healing. We are still on antibiotics for the 8 days. They really can't give a reason this happened other than it was in his system from when he was very young. I just have to watch closely cause it is possible this may happen again. Oh Boy!

As RSV isolation really starts to set in I have decided I know the biggest thing that bothers me. I used to be able to go and get something when I wanted it before. Like tonight I had such an itch for a cappuccino form the gas station. Any other time I would be able to go the block down the road, but now I can only dream...haha.

Well the baby is back to being grumpy and slightly hungry. Sorry for the hurried update, just wanted to try and catch up.

Jordan

Mama Bear

What can I say, but I'm not used to having to fight for Luke's best interest. I was spoiled with Riley apparently. Today however it was time to step up. This morning when the doctors rounded on Luke his abscess actually looked worse than when we first got to the ER. The suggestion is to drain out the area more than just the one area than they did on Saturday. The big ordeal is Luke's pain tolerance. They would like to sedate him for the drainage, however this can be a little dangerous I guess you could say. Due to Luke's chronic lung disease they want to watch things very closely. So the actual doctor on the floor isn't going to do, but a surgeon will do it in an OR. I guess it is a good thing and a bad thing. One I am not a fan or doing anything that can be dangerous due to his breathing. However, I am glad they are being precautions and doing it in and OR just in case the worse takes place. The surgeon insisted on continuing the Vancomycin for 24 hours to see if it would break down more infection. This is where I questioned things. We have been on Vanc since Saturday night and things have actually gotten worse. Why continue something that is apparently not working. After talking to 2 nurses and them calling in a doctor that was on call I finally got my way. We are trying a new drug for 2 doses to see if that will help some. It is pretty much inevitable that he will have a draining tomorrow. I guess I can't complain if it works. Just as long as we move out of the germ infested hospital. There has been the first confirmed case of RSV here this past weekend. In the words of our pediatrician, "get him out of there as soon as possible." I'm just hoping this works tomorrow.

Like I said on facebook tonight, I feel like we have asked so much from everyone the past 4 months, but if we could ask one more favor. Please pray that this works for Luke. So we can get him home and out of danger here. Also we can relieve him of the discomfort that he is going through now. I'm not a fan of being stuck at home, but I would that over this any day. Thank you all so much!

Jordan

Super Luke!

                                  
There is no question that this little boy will have a Superman themed birthday party, especially after this trip. Last night Luke did really well for what all he went through. He slept pretty well. However I did not sleep too well. They don't make hospital rooms for parents. If I could make one suggestion, couches. The reclining chairs don't cut it. Another surreal moment, watching a helicopter land right outside our window. These past 4 months are so surreal to us. It feels like a dream still.

Today Luke's doctor repacked his wound and things are starting to look a little better. It isn't as read and swollen, however it still is infected. The cultures have not grown anything, which is a good sign actually. They were most worried about MRSA originally, that's why we went with Vancomycin. However, it there is still no growth tomorrow we will switch to a new antibiotic that will be oral instead of IV. Today we started with an IV in his head from yesterday. Then half way through his morning dose his IV blew and they had to place a new one. They were thankfully able to place it in his foot. It just seems less harsh to me than his head. After much conversation they then gave Luke 5 little subq injections to break up the Vanc that was left in his head where it blew. All I keep hearing is that Vanc is so rough on veins. I hate to say it, but we know Vanc like the back of our hands. I will always blame Luke's hearing on it. Fingers crossed that we can discontinue it tomorrow morning.

For the past few months we have been watching Luke closely for a hernia. It was brought to our attention when Luke was tiny. With all of the swelling and close attention we have been monitoring it closely lately. Today the doctors ordered an ultrasound to get a definent answer. It was conclusive that he does for sure have one on the right side next to the abscess. They however are not connected according to the doctor. Now we will have to schedule a surgery at Riley to fix the hernia. They usually don't do this till a year or so. We will have the procedure done at Riley due to his preematurity, and we will once again have to stay the night....I swear hospitals have become my life. Here we were so excited to get home, and back we go to the hospital.

If we don't have any growth tomorrow we will now be here till at least Wednesday to see if the new antibiotic will work. So tomorrow I will be calling Riley and canceling all of our appointments that were scheduled for Tuesday. Even if we were discharged tomorrow, I'm not into taking Luke down there with an open sore. It is a little funny that we are trying hard to keep away from RSV and here we are in the infested hospital. Ironic really!

So hopefully we have a calm night along with some good news tomorrow. Thanks everyone for the continued prayers on this new venture.

Jordan

Not at Riley Anymore

This is not what I had planned for a nice Saturday at home. While I was getting Luke ready for a visit from my grandma I noticed a swelled up area between his groin and his thigh. I could feel some heat along with a hard area. My first instinct was...ER! I woke Jonathin up and told him where I was headed while he helped me pack everything. Deep down I knew this wasn't something small and we were headed  for a few days. I didn't tell Jonathin that, but deep down I had a feeling. My parents just happened to be in South Bend at my mom's work. I picked her up and we headed to the ER. We were so lucky that we got there when we did, there was no wait. Now don't take that as we didn't wait at all. Throughout our entire ER stay we were cooped in a tiny room for 5 hours. When the doctor finally came in, it only took a few seconds to diagnosis Luke's leg with an abscess. They explained it as bacteria that has clumped together almost like a large zit. So first he ordered blood work and then an ultrasound. Luke was a champ throughout the entire thing. As much as he has been poked he hardly made a peep during his blood draw. He wasn't as big of fan of the ultrasound as they applied pressure to his leg. Originally they were going to drain his leg in the ER, however finally they decided to just do it once they moved us up to the PICU. When they did drain his leg they didn't get as much drainage as they wanted. So now Luke is on Vancomycin, an antibiotic, every 6 hours. My thoughts on this drug go both ways. It is a great drug, however, it is thought to be the cause of his hearing loss. But, like I said before. I would rather beat an infection first. They also filled Luke's leg with medicated packing and will change it daily, of course while I am not in the room. I am just hoping that he can sleep tonight. Maybe all the excitement will have wore him out. I can just say this is a whole different world to us. I know Memorial is a great hospital, but it isn't Riley. I have gotten so accustomed to Riley, this feels like I'm cheating on Riley. We are supposed to go to Riley on Tuesday, but those appointments are up in the air as of now. Hope to have some good news to relay to you tomorrow. Thank you everyone for the prayers for our little man, hope he can beat this quick like everything else that has came along so far.

Jordan

After a long day with an IV in his head this is how Luke felt about my picture taking...