Let's Get Him Fat!

So...last time we left you, Luke had sniffles and a slight cough. Well last Saturday night I didn't want to push it anymore and wanted to be told he was okay. So at nine o'clock at night Jonathin and I took off to Goshen ER with Luke. It was a whole different world there, no doubt about it. Instantly we were taken back and the doctors saw him before we even had him undressed. They were more knowledgeable about him being a preemie and from Riley. They even commented on how he didn't look like a preemie due to his head shape. As you can remember there was much work put into Luke's toaster head while on the ventilator. Within 2 hours we had an x-ray and a sputum sample and were on our way home. It was so nice for the x-ray to come to us. When we are at Memorial we have to go clear across the hospital to get it done. Luke wasn't as much of a fan of the sputum sample though. However, he was negative for RSV, Flu 1 & 2...yay! His x-ray came back with a little cloudiness in one lung, but they couldn't compare to others from before. It could just be from his chronic lung disease. He also had a minor ear infection. The doctor decided to treat him with an antibiotic for the ear and as if he had a touch of pneumonia. I was just relieved. Needless to say, we all slept better that night.

On Monday afternoon Luke and I headed to Indy for our first road trip alone. We did pretty well I think. We only stopped once in Argos for a little nose sucking. I don't think it bothered him, just his mom. We spent a little time at our hotel, then went to visit Danielle and Cassie. It had been awhile since they had seen Luke. They used to visit him often while we were at Riley. We had a good time catching up and Luke had a nice conversation with Cassie while Danielle made dinner. Then we went back to the hotel to try and get some sleep before our early doctors appointments. Luke had other plans. Instead we stayed up and watched many hours of Duck Dynasty, not that it bothered me too much. At least it was good entertainment. Even with our late night, we were ready for out first appointment at 7:50am.

These appointments used to seem like a lot of work to begin with, but now after 7 months of them, we are finally getting the hang of it. Of course the first appointment was with Developmental Pediatrician. We did not have a good appointment last time we saw them. You can reread it here...Don't Treat Us Like Failures. We were seeing a new doctor that was recommended to us, Dr. Keck. She was great with Luke. She was friendly and helpful. She was happy with Luke's growth, except for his weight....no surprise there. So the dietitian was called in. Luke's weight to length ratio isn't great. Since Luke still isn't a bottle baby, we had to figure out how to gain weight with his habits. The answer....PURE BUTTER! Luke will now be eating high calorie baby food with a teaspoon of butter in every jar. Also, since Luke isn't getting a lot of protein in his formula he will have to start eating baby meat. So once a day Luke will have a jar of meat added to veggies. She offered to add it to cereal and fruit....gag me! I couldn't ruin all foods for this little boy. His doctor describes him as an opinionated eater. She would like to have him seen by the speech therapist...been there and was then forgotten about again. She would like to see if they can break him of his habits. If that doesn't work and he doesn't start catching up with weight we will be recommended for an inpatient stay. They would have Luke for a week or so inpatient and a team of specialists would work with him. Including a psychiatrist...lol. We shall see about that.

We had an hour to waste before our last appointment so we went and sat in the main lobby for awhile. Luke napped while my mind wandered. All the noises and the surroundings brought me back to the 3 months we were there. It seems like forever ago, but then I could be right there again tomorrow. That was our way of life for so long. I think it will be interesting when Luke can finally know this amazing place and what they did for him.

Lastly that day we met with our Pulmonary Nurse Practitioner. Nancy was happy with how Luke looked and sounded, even after his ER visit. She was also happy with his growth and weight gain. She doesn't see the weight and length ratio, she just sees what he has gained over the past month. Since Luke hasn't had a trouble really over the winter she was happy if we don't see her till the end of August! That is only if we have problems this summer and if we need her help to get Synagis shots next fall/winter. From a baby that was on a ventilator for 2 months to where we are now...amazing. I never thought we would get to this point for quite a while.  After that good news we headed home. The ride home wasn't as easy as the ride down. Luke was tired of being in the car seat, and I didn't blame him.

He has started his new feeds and hasn't done too bad with it. Hopefully he will keep it up. We still haven't closed on our house, hopefully on Tuesday at the latest. I think Luke will be happy too when we move. The poor baby has no toys or entertainment other than his swing. I think Mom is getting pretty boring to look at and play with daily.

Not so happy with his meat.

Emergency Room = Thumbs Down

Okay let me just start by saying that I am venting a lot in this post before anyone thinks I am going crazy. Last night Luke slept pretty good in his swing. He didn't get cranky till around 6am after Jonathin was home. He went into a lot of crying and hacking. This led to him breathing really hard to catch his breath. He also was retracting when he breathed. This is when he is sucking in his breath so strong that it sucks in right under his rib cage. We were always taught to watch for this at Riley as a sign as respiratory distress. So I decided to turn up his oxygen to where we originally started 2 months ago, just to give him a little help.

I figured that it would be best to call his pediatrician just to give them an update since our appointment on Friday. After leaving a message the nurse called me back. She said that Dr. Durham wasn't there yet, but the other doctors said we should take him to the emergency room because he is such a special case. So around 9am we headed to South Bend once again. We were able to get right in, surprising I know. The doctor seemed nice and he ordered a X-ray. My main worry was pneumonia and in the back of my mind, RSV. I didn't think that was the case, but a preemie mom's mind wanders. After 3 hours or so the doctor came back in to explain the situation. The X-ray didn't really worry him at all. His exact words were, "If he was a term baby I would send him home now. But since he is an extreme preemie we would like to admit him for a couple hours to monitor him." Gotta love the special circumstances preemies get. However he explained there really wasn't anything they could do for Luke. Not a medicine, not a breathing treatment, just sit and watch him.

The doctor then stepped out and we were left to ourselves for another 2 hours to discuss things. The more Jonathin and I sat there the more we decided against their advice. Luke had calmed down and even the doctor said he looked fine when he was calm. I figured I could watch him as much as the nurses could. Let me explain....the nurses never checked on us once in the 5 hours we were in the ER. Also when we would push the nurse button it would alarm for 8-10 minutes before someone would remotely notice. Usually someone would come in and turn it off, then retreat for our nurse without even saying a word to us. Jonathin joked, how could this be an ER. At this point I was getting upset. Once we were able to find our nurse we told her we decided to take Luke home. I don't think she liked us taking a stand. So for the next hour or so we got the run around about the doctor wanting to talk to us again and how the peds department thought it would be best for us to go upstairs. No one would listen to us.

Finally the doctor came in and turned into a jerk. He pretty much told Jonathin and I we were idiots. His exact words were..."Are you prepared to go home and your son to stop breathing?" Okay, this really pushed me off the deep end. I then explained to him that for 5 months we were with Luke and know him front to back, and we have an apnea monitor at home also. He got snippy with us, because I did not share all of this knowledge in the first place. No offense, but he knew Luke was a micro preemie and that we spend over 3 months in the hospital with him. It was like he thought we were so naive, and didn't know anything. At this point I couldn't get out of there sooner. He said that he only let idiots sign an AMA (Against Medical Advise), however now we don't sound like idiots so he would discharge. I couldn't get Luke in his car seat quicker. I understand that they get parents that are so clueless sometimes, but is that how we really looked. I mean we came in there explaining the situation and speaking like we at least had some since. I was just really put off by the situation.

All I could say to Jonathin is next time we have an emergency, we will drive to Riley. How sad is that, we would drive over 3 hours away. I tried to explain to the doctor that I would rather be home watching Luke instead of sitting in the germ infested Disneyland called the Peds Floor. I'm going over the immune deficiency that Luke is fighting, and it is like talking to a wall.

So we were finally home around 3pm this afternoon and we all then took a nap. I think we all needed it after our day. Knock on wood, Luke hasn't coughed since we have been home and is looking comfortable in his Daddy's arms as they play the Xbox. Hopefully we can have a comfortable day tomorrow with no excitement. I mean nothing against Memorial Hospital, but I was not impressed today. Hope we can stay hospital free for awhile for now.

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...