accomplishments

Let’s recap. First and foremost, I want to thank everyone involved with Burritos for Wyatt. It is overwhelming to know how many people care and want to help in any way possible. Thank you doesn’t seem to be enough but it’s all I know to say. So, THANK YOU!!!
We have decided that we will be driving to Chicago. Financially it’s a toss between flying vs. driving so it’s primarily a matter of travel time. With February weather in mind, driving allows us to go at our own pace and take breaks whenever needed, we’ll have our own vehicle during the whole stay, have more room for all the medical equipment and my pumping needs, and avoid the potential risk for illness and infection which was our main concern with flying. Since we have family in the Chicago area, we’ve also decided to make it a whole family trip and use a couple extra days as a mini vacation so to speak since we all know that the chances of us traveling for a second trip again in the same year are minimal. To make this fun-filled family adventure possible, we have enlisted the help of grandma and grandpa to drive behind us in their own vehicle and help with the other three kids. It will be freezing cold and the five day hospital stay will be very stressful but on the bright side, we’ll see some relatives and maybe the kids will finally see snow. So that’s the plan. The only thing I’m still waiting on is confirmation from the insurance that they will cover this five day ICU evaluation and treatment and to what percentage. It’s being processed for pre-approval right now and we’re keeping our fingers crossed because it could be a deal breaker. So we’ll see.
On another note, if you followed our Facebook post you probably saw the lovely picture of one of our overnight nurses sleeping on the job. I won’t post the picture on here again but to all the other parents out there who depend on nighttime nurses, get a video monitor! It’s indispensable! We purchased one after this happened to us the first time back in September. We have the Summer Baby Touch which allows you to use up to four different cameras, zooms, pans, has a talk feature, and excellent night vision. We know use it daily at any time Wyatt is sleeping so we can always keep an eye on him. This is how the sleeping nurse situation went down: I had my alarm set for 330am to get up and pump. When I came downstairs all the lights were off and I could barely see that the nurse was in the rocking chair next to Wyatt’s crib. Speaking from previous experience, then entire downstairs house being dark in combination with the rocking chair being used, that just was not a good sign-hence the video monitors with night vision. So I went back upstairs to check the monitor to be sure and my blood pressure went through the roof. I woke my husband up also just so it wouldn’t be my word against the nurse. He ended up taking a picture of her sleeping through the video monitor. I had to go into my bathroom and brush my teeth just to calm down. When this happened back in September with another nurse, I made the mistake of confronting that nurse myself which is a no win situation. This time I called the nursing company, waited for the on call person to call me back and then simply woke the nurse up with the words “You have a phone call” and handed her my phone. The on call person asked her to leave immediately and she did so without saying a word to me. That was smart on her part because nothing she could have said would have made me any less angry and arguing would have only woken up Wyatt which then would have made the situation even worse. So needless to say, she left and is not to return. In fact, I heard that she ended up getting fired because we had proof that she was sleeping. The biggest issue now for us is, aside from building trust in nursing again, that she was supposed to be with us four nights a week so we have a lot of openings to fill. But I’m not too concerned about it. We’ve come to accept that we can and should not depend on nursing so we figured out a routine that works for us no matter what.
While we’re on the subject of home nursing though, we did just get word that our nursing hours were approved for an increase  from 10hours a day to 16hours a day from now until May when it will be time for reevaluation. Honestly, my husband and I were not too excited because it means we'd be switching from our 8p-6a shift back to 3p-11p and 11p-7a shifts. That's such a pain because we'll have to be home at 3p every day again and stay up until 11p or later for shift change and possible nurses orientations. We could play around with the hours a little bit and move them forward or backward but it still would mean that there will be no more spontaneous day trips. Family time is also so awkward with a nurse around even if they are in another room. We had just gotten into such a great rhythm with our 8p-6a shift. It’s just such a weird position to be in. I don’t want to be ungrateful but I'm so stressed over having nurses in our house during the day time again. At this point in time, I don’t feel like I need or want the help. Therefore, after tossing ideas and different scenarios back and forth, my husband and I decided that for now, we want to only keep our 10hour night shift of 8pm-6am.   
But let’s get back to the positives and focus on what really matters... We went on our first family grocery trip today! I know to most people this doesn’t really mean much and in fact, most parents would give anything to be able to go grocery shopping without their kids but to us, it was a big accomplishment. Wyatt was in the double stroller with all his gear and then we also had the shopping chart to push around. Based on the looks on other peoples faces, it must have been quite a sight. I guess we need to get used to people starring though. It’s not every day you see a family of six walking through the grocery store like it’s no big deal, yet alone a family of six where one family member is attached to a ventilator and to top it off, none of our kids were throwing a fit to get attention because that’s how we raise them and they know better not to do that.  Sorry, had to throw that in there ;) In all reality though, it’s hard to ignore the looks and it’s even harder not to respond. But ironically, it made me proud because most people wouldn’t have the guts to even attempt this. Wyatt did have one blue spell while in the store but thankfully noone walked by at the time so I didn’t have to explain why it was “ok” that my 6 month old was turning blue... Going to a restaurant, check. Grocery shopping, check. Date night without kids-thanks to Grandma and Grandpa, check... Wyatt is rolling back and forth so much by now that he even rolls himself from front to back in his sleep, whereas before he was never comfortable sleeping on his back. He also scoots all over the place chasing down toys, especially loving the mirror. His two bottom front teeth came through about a week ago and now the top two are ready to break through also, leading to him once again chewing on absolutely everything he can get his hands on. Yesterday Wyatt also discovered his toes and has started to play with his right foot. I’m waiting for him to try to stick that in his mouth. Sitting up on his own is still a struggle but we bought him a standup bouncy seat/activity center hoping that will help his abdominal muscles rebuild faster from when they were cut during surgery back in July.  I still have to put the activity center together but I will try to remember to post a picture once we put him in it for the first time. We also figured out that Wyatt apparently loves to chew on pretzels. I’m still hesitant to try the bottle because even with the Breastflow nipples the milk just comes out too fast. We know it’s not a swallowing issue though because Wyatt swallows just fine and in his sleep even has the sucking motion down. It’s when he consciously has to suck on a bottle he doesn’t know what to do with it and it becomes a tongue coordination issue. So if too much fluid gets into his mouth too fast, it’s still too much for him to handle. But Wyatt is showing a lot of interest in food now and actually gets mad if we don’t share food with him. So today I bought baby food of different colors and tastes. I’m hoping the thicker texture of the baby food will work better for him. The reason behind the different dark colors is so we can double check and make sure he doesn’t silently aspirate anything, meaning we’d notice the unusual colors when we suction him. I’m going to give it a try at his next feed at 4pm. It may take a while for him to figure out what to do with the spoon in his mouth, to keep the food in his mouth and to find a specific flavor he likes. But the way I see it, there is no better motivation for him to learn than being surrounded by the whole family at meal time and simply giving it a try. In other words, I’m not a fan of Occupational Therapy or just waiting it out for him to make the connection. Long story short, so far occupational therapy hasn’t done anything new that we hadn’t already tried and after the last session I was ready to call the quits. Our OT can only come once a week in the evening which is a bad time for Wyatt and last Friday that led to eight blue spells within an hour before Wyatt finally calmed back down. So, I’m taking it upon myself to try real food with him rather than just tasteless therapy tools. We’ll see how it goes... Speaking of taking things into our own hands. Wyatt has been doing amazing with sprinting as well. I can still only try it right after he wakes up and is the happiest but he managed 45minutes in the morning and another 30minutes in the afternoon yesterday with his Sats staying at 96 or higher! So we’ll keep at it, we just have to figure out how to break the news gently to our Pulmonologist since he has been hesitant to let Wyatt try. We have an appointment this Tuesday at which point I will also question him on Wyatt’s twice a day Pulmicort prescription which after two months of use has not made a difference. I’m probably not a doctor’s favorite patient/parent since I question them on everything they do and avoid medication if at all possible but hey, they get paid by me so they work for me. Tuesday is also the day Wyatt is getting his Bardex G-tube replaced with a button. I’m still nervous about that procedure since they have to sedate Wyatt but the current G-tube is become more of a problem even day, especially with leakage and skin irritation. Let’s just hope that Wyatt gets the hang of the feeding deal soon so the button will just be the latest baby accessory trend.
Well, that’s all I can think of for today. My apologies for jumping topics. The date night at my husband’s end of the year work party last night explains my scatter brained blog entry today. Or at least I’m choosing to blame it on that rather than my anticipation of joining “the point of no return wanna be young again group” when I turn 30 next month.