Family: forever, for always, and no matter what

Monday, March 28, 2011

This is a joke, right?

Do you ever get the feeling that someone is just pushing you hard enough until you are just about to break and then they tell you it was all a joke?? I SO wish that was what was happening to me today...but nobody has called to tell me it was all a joke yet! Yet again today, we have no nurse. Ya, see why I think this is a joke? Our nurse called in today with a sick child, and naturally, the agency wasn't able to find anyone to cover the shift. Maybe it is just me and I'm living in some kind of "dream" world, but wouldn't you think that the agency would have an "on-call" back up nurse???? I wonder if all agencies function this way, or if it is just ours? Maybe this is just how it goes, but it seems to me that they could be more efficient if they had people who could cover. We do have "back-up" people, but none of them are able to be here on such short notice, and a couple of them are actually in RN school, so they can't work during the week. Beyond being frustrated with the situation in general, I was even more frustrated today, because it was my first day back after Spring Break. I'm not sure who to feel more sorry for, my students, or the sub who has to try and get them back into a schedule after not being there for a week. Thank God my husband puts up with me...he took the brunt of my frustrations this morning. I knew it wasn't his fault, but I was SO angry. It is such a pain to have to go into school and make sub plans, especially when we haven't been there in a week. Not to mention, our call from the agency didn't come until well after I should have called in to request a sub. It isn't fair to the school to have to scramble to find someone to cover for me. So, the dominoes just keep falling. I did however, call Troy to apologize for being such a brat this morning. Like I said, I'm lucky he puts up with me!! Oh a happy note, when I walked into Kaylee's room this morning, she was super excited to see me. We got some good snuggling done! :-)

Last week was a good week for Kaylee. She seems to finally (knock on wood) be getting over this cold junk. She is back to her happy, ornery self. Kaylee had her first visit with the dentist last week. I had been putting if off simply because I was afraid of what they were going to say about her teeth. Because she doesn't swallow, her spit just sits in her mouth, and as a result, her teeth look pretty nasty. We saw a pediatric dentist and Des Moines, and I was very happy with the visit. Dr. Barsetti was really great with her, and great at explaining things to me. After looking at her teeth, he told me they looked pretty good. I almost laughed out loud. He said that the "stuff" on them is really just a stain from her saliva sitting in her mouth, but the teeth themselves are fine. He also said her gum tissue was really healthy. He went ahead and scraped on them and polished them up, and we'll go back in 6 months for a check up. Kaylee tolerated things well. She wasn't happy, by any means, with the scraping and polishing of her teeth, but she didn't do any worse than any other kid on their first trip to the dentist.

Saturday night was a fun night at our house. Most people tell their kids not to play with their food while eating...not the case at our house! We end up playing with food in order to get Kaylee to put things in her mouth. So, Saturday night we had ribs and potato casserole. Kaylee had a ball! We got her to put the rib bones in her mouth, and all the while, her little tongue was going crazy. The drool was just pouring out of her mouth. Next we attempted the potato casserole. At first she just played around with it in her hands. Next, she thought she should use a fork to play with it, and that resulted in her flipping potatoes across the plate and up in the air. Dylan was a great help. He'd make sure Kaylee was watching him, and he'd take a big bite. Kaylee would copy him by putting her fork in her mouth. Once she tasted the food on it, she would do all she could to push it out of her mouth. Things got really funny once she got the potatoes on her hands. She would grab a napkin and work like crazy to get her hands cleaned up. Then she'd start wiping off the table. I think she might have inherited her aunt's OCD! (Sorry Brandi) After dinner, Dylan pushed Kaylee around in one of the kitchen chairs. Who knew chairs on wheels could be so fun for a two year old and a four year old. He would spin her like crazy and then push her across the room. The whole time this is going on Dylan is giggling like CRAZY and Kaylee was making all kinds of noises. It is so fun to watch the two of them play together. They have a very special relationship, for sure.

On Sunday Kaylee got to see Great Grams and Great Gramps for the first time since September. They made if back from Arizona on Thursday and stopped by yesterday morning with doughnuts! They couldn't believe how much she had grown, and all of the new things she is doing. Kaylee was pretty bashful, but after a while started to warm up some. It was almost like she really wanted to play, but just couldn't quite get over that shyness to do it. I'm sure after a couple more visits she'll be snuggling with them in no time.

 Well, Miss Thing thinks she needs to get into everything this morning, so I should probably go put my house back together now! Hope you all have a great Monday!

Sunday, March 20, 2011

Is it Monday yet?

What a weekend! I'm glad we are on Spring Break this week...I'll be using my time trying to get caught up around the house. We didn't have big plans this weekend, but I did intend to accomplish a few things. That was all put on hold though.

Saturday morning I woke up to our night nurse's voice. I thought it was odd that Kaylee would be up and out of bed before 8:00, (yes, we were blessed with a good sleeper) and then I realized it was almost 8:30, a half of an hour past Crystal's (the nurse) shift. I jumped out of bed and went to see what was going on. The obvious conclusion was that our day nurse didn't show up. This is very unlike her, so I went ahead and called into our nursing agency. I was informed that we didn't have anyone scheduled to work on Saturday. Funny, our schedule shows that we did. To make everything even better, the person who was on call for the agency had never handled the "on-call" process, so she had NO IDEA what she was doing. Fabulous! Anyway...after I told her that our schedule showed that we did have coverage for the weekend, she decided she'd do some checking and then get back to me. Twenty minutes later she calls back to again tell me that our schedule is wrong. DUH! At this point I was pretty well ticked off. I had made plans with Dylan for the day, and Troy had left early to go take care of some things at his mom's. Dylan was less than impressed that yet again, he couldn't do what had been promised to him. So, I let the on-call gal have it! I chewed on her for a while, knowing that she wasn't going to be able to do anything about it, but it made me feel better! Her response..."I'll have them call you on Monday to see what is going on." Ya, because Monday is going to help me with the current weekend problem?!?!? Honestly, where do they find these people? The whole time this is going on Crystal is still here playing with Kaylee, and trying to help this "on-call expert" figure something out. She seriously does not get paid enough. Finally, after about an hour of calling back and forth and Crystal basically taking care of the problem, we had a plan. Crystal, who had been at our house since Midnight, would spend the day with Kaylee, filling the day shift, and then another gal would take Crystal's night shift. However, there was no nurse today. Crystal is AMAZING to say the least. We are SO grateful for all she does for our family, and Kaylee absolutely adores her.

While I was glad to have someone with Kaylee on Saturday, I was beyond frustrated with the whole deal. It isn't that Kaylee's needs are so huge that you can't do anything else while taking care of her, but she does require a LOT of time. Her feedings, which are done three times during the day, take about an hour a piece. Usually, her morning feeding results in her puking 1/2 of it up. Beyond that, she has occupational and physical therapies that need to be completed.  For the nursing agency, it is just a matter of filling a shift. For us, our lives hinge on having a nurse here. I can't pack Kaylee up in the car and go somewhere with her by myself. God forbid we get down the road and she get a plug in her trach and needs to be suctioned, someone has to be right there. By taking her places during this time of year, we also risk exposing her to all kinds of viruses that could easily wear her out and put her in the hospital. Don't get me wrong, she has made leaps and bounds of progress, but we still have a very long way to go.

I was also frustrated that Dylan continually gets the short end of the stick. Nothing makes me feel more like a bad mommy than when you make a promise to your child and then have to go back on your word. Dylan always handles it so well, but I hate that he always has to compromise. He is an amazing child however. To watch him play with Kaylee and love on her, you would be blown away. He absolutely adores her, and would give up anything of himself, if it means that it would help Kaylee. I hope as they get older, that doesn't change.

I'll end the post with some positives: pictures of Kaylee and Dylan




          ~Dylan loving on his sister~



~Dylan reading "5 Little Monkeys" to Kaylee. She likes to shake her finger during "No more monkeys jumping on the bed!"

~Taking Elmo for a walk this morning. This stroller is such a help in getting her to walk on her own.~






~Showing Elmo all of the things Mama keeps in the kitchen drawers.~ She likes to pull all of the items out of these drawers and throw them across the kitchen! (Check out her CURLY pony tail)

Saturday, March 12, 2011

Dear Spring, Please get here NOW!!!

If I close my eyes and click my heels together three times, do you think Spring will arrive, like NOW??? Our house is now infested with germs of all kinds, and I am in desperate need of opening windows and airing this place out!

Kaylee in hanging in there. She seems to be in much better shape than Monday, but still not 100%. She just isn't quite as "happy" as she usually is. We have had a few nights of O2 and even a nap time where she needed to be on it. Her lungs are sounding pretty good, so I'm hoping she is on the downhill slide of things. We finished her antibiotic up this evening, so now I think I need to keep my fingers crossed for no future ear issues!

As for the rest of us...I think Kaylee shared her gunk with all of us. Dylan has been coughing and sniffling for a few weeks now, but seemed to be getting along o.k. This weekend he started complaining of his ear hurting. Great, just what we need! Troy caught it too. He was all stuffed up and pretty much miserable, or so he thought. Then came Wednesday....and he was REALLY miserable. He too, ended up with an ear infection. After three days on an antibiotic, he is starting to feel a little relief. I also felt like I was coming down with something, but it never really evolved, until today. UGGHH! I think mine has all settled in my sinus cavities. My face feels like it is going to explode, and I can't bend over without my teeth throbbing. SO, I think Dylan and I might try to make a trip to the doctor Monday afternoon. I have parent/teacher conferences on Thursday and I absolutely do not want to be dealing with sinus junk while trying to have conversations with parents.

Not much else is going on in the Hoepker house. We, and by "we", I mean Dylan and I, are anxiously awaiting Spring Break. He is super excited to have 9 "stay home" days. I'm not sure what he thinks we'll get to do, but mommy plans on organizing things for a garage sale this summer. I'm sure he'll be lots of help with that.

Here's hoping that Spring arrives SOON, and that you all are able to get a little bit of a Spring Break to do something exciting...which does NOT include organizing items for a garage sale. :-)

Monday, March 7, 2011

I should have never opened my mouth....

I knew it! The second I mentioned not having to go to Des Moines last Monday, I knew I was jinxing myself. Sure enough...guess who had to make a trip to Des Moines to the doctor today???

Poor Miss Kaylee just can't catch a break. Yesterday morning was really rough on her. She hadn't slept well on Saturday night and she was beyond tired. She also started running a low grade fever. After a good nap however, she seemed to be in good shape. She played well all night and was a pretty happy little thing. Then came bedtime. Things went smooth at the beginning, I got her all hooked up to her machines, and she was doing well. Her heart rate was just slightly elevated and her O2 was a little low, but nothing to really think twice about. An hour later, sh*t hit the fan! Kaylee started coughing and hacking and then the suctioning began. It seemed like no matter how much I suctioned, there was always more that needed to be suctioned out. It was like she was drowning in her own secretions. We put her on O2 and continued with the suctioning for a good 45 minutes before she calmed down enough to be able to sleep again.

Cami came at Midnight and was able to turn Kaylee off of the O2, but by 3:45 she was needing it again. Her O2 levels weren't bad, but she was working so hard to breath. Her respiratory rate was at 51 breaths per minute, when it is usually around 28. She was also running a low grade fever by this time. She went back on O2 at an 1/8 of a liter. This is a fairly minimal amount, but after having not needed it for so long, any O2 is more than we like to see. She was able to come back off the O2 later and maintained her levels after that. However, Cami did say her lungs sounded pretty bad. That was all I needed to hear to know that I needed to be getting her to the doctor.

We were able to get into Dr. Liedman at 10:50 this morning. After listening to her lungs, he was comfortable with saying it is just a cold. She sounded so terrible at night because it was all settling in her lungs, but once she got up and moved around, she was able to work some of it up. He thought this was just a viral thing, and because her O2 levels weren't too terrible, he wasn't really concerned. He did give us the go ahead to do breathing treatments as needed. I felt a little foolish for taking her to the dr. for a cold, but with Kaylee, you never know! I'm glad we went and were able to have him check her over, but still, a day off work and a trip to Des Moines with $3+ gas??? UGGHHH

I'm not even going to mention any future trips to Des Moines, just in case. I will keep my fingers crossed, along with my toes...if only that would actually help. I'm hopeful that Kaylee will kick this little cold and slide through the rest of the season. Keep your fingers crossed too!!!!

Saturday, March 5, 2011

The Good and the Bad

So we didn't have to make a trip to Des Moines on Monday!! Troy called Dr. Liedman, and thankfully, he suggested just using ear drops unless something changed. I thought we were going to slide through this little ear infection, but Kaylee had other plans. Wednesday night Kaylee seemed fine, but when I put her to bed, I realized she wasn't comfortable at all. I got her all hooked up to her machines and found her heart rate to be in the 150s, which is pretty high, for a "resting" Kaylee. Her oxygen levels were also lower than they usually run, so I knew the ear drops hadn't done the trick. On top of all of that, our night nurse wasn't Cami! Not that the other gal doesn't do a good job, but she isn't Cami!! This other gal only works about once or twice a week, so Kaylee isn't as familiar with her, nor is she with Kaylee. Cami knows her so well, that I just sleep better when she is here. Kaylee didn't sleep well that night, and neither did I. I kept hearing the alarm go off, and then I'd hear the suction machine. I swear that machine amplifies itself at night! I got up early and visited with the nurse about Kaylee's night. The alarm wasn't going off because of her oxygen, which relieved me a little, but her heart rate was pretty high all night....like 180 - 190s! Yikes....it hasn't been that high since last March when she made a trip back to Mercy for 3 weeks. Adding to all of this, we had a new day nurse start on Tuesday. This made me really nervous because she barely knows Kaylee, and here Kaylee is sick! I got myself all worked up thinking about how she might know know where the oxygen clip is for Kaylee's trach valve, or what if Kaylee needed a breathing treatment, would she know where to find it?

Troy called Dr. Liedman again on Thursday to see what our next step should be. He called in another antibiotic, but by the time we could get it picked up, she didn't get her first dose until 6pm. We could see a difference in her about an hour or so after getting it. Kaylee was also getting tylenol/ibuprofen for a temp too, so I think they were finally able to reduce her pain. I was hopeful she would have a better night, and also grateful that Cami would be back! Kaylee did have a better night in some ways, but not so great in others. She was able to get some better sleep, and her heart rate was much lower than the night before, but her oxygen levels were pretty crappy. She had to be on O2 for most of the night, and even into a good part of Friday morning. However, by noon she was off the O2 and her levels were great the rest of the day, and into the night. Kaylee's orneriness was back too! I think she is making up for lost time and Dylan isn't too thrilled with the overtime she's been putting in!

I am hopeful that once we finish this round of antibiotic she'll be good to go for a while. Hopefully this snow will finish melting, the weather will get warm, and summer will be here before we know it! Wishful thinking??? Probably, but I'm going with it anyway.