Family: forever, for always, and no matter what

Wednesday, February 1, 2012

SIX MONTHS!!! REALLY??



I would love to give you all a list of reasons why I haven't updated Kaylee's blog is SIX MONTHS, but I can't think of ONE single reason other than life, it happens, and it happens a lot around here! I'm sure you all know how it goes. When you finally do have a minute to sit down, it is nice to do nothing more than just sit. That's my story and I'm sticking to it. Well, that and the 100 times I thought about updating but kept thinking about how much I'd have to type up and how long it would take, and before long I would have myself talked out of doing it. However, after watching Kaylee hang strong and endure a VERY LONG walk from the Mayo Clinic back to the truck, I realized if she could put the effort and time into that huge accomplishment for herself, than I could surely toughen up and update her blog.

I'm gonna try to go back six months and see if I can try to remember all of the events between now and then. I used to pride myself in my great memory, but here lately, that memory seems to be failing me. It surely has NOTHING to do with age!

When I last updated, we had just returned home from our summer Mayo trip. Kaylee had undergone a scope and and PH probe. The results from the probe showed that Kaylee was not refulxing but rather suffering from a condition called eosinophilic esophagitis. Eosinophilic esophagitis is an allergic inflammatory condition of the esophagus. Symptoms are swallowing difficulty, food impaction, and heartburn. The disease was first described in children but occurs in adults as well. The condition is not well understood, but food allergy may play a significant role. Because Kaylee doesn't eat anything  except for Pediasure, it was suggested that we switch to a new formula to see if it would stop her vomiting. We switched to a brand called Elecare and were hopeful that it would make the difference for her. Unfortunately it didn't work out that way. We finally gave up 10 days into the new formula. Kaylee's poor tummy was just a mess and because of that, her little tush was absolutely raw! The poor girl was having 5 to 6 stools a day. Since that didn't work, we just kind of played around with the volume of her feedings. It seemed that she would vomit more in the morning. We wondered if it might be because she is on a continuous feeding overnight and then within a couple hours of it being done, we were giving her another feeding. It seemed to help some, but there were still days when she'd vomit for no rhyme or reason. Talk about frustrating. The nurses would take her feeding really slow to help her out and she'd still get sick.  It doesn't seem to happen as often, but I wonder if the next time we increase her volume, we'll see the problem arise again. We did talk with the GI doctor earlier this week and they would like to try her on a steroid that is used to help this condition. The problem is, this medication is supposed to be swallowed. Yep, that could be a problem.

(So I took a quick break to get Kaylee ready for bed and came back to find her in front of my computer. This is what she typed: kpookkjk)

I'm kind of jumping around here, but prior to my interruption from Kaylee, I was telling about this steroid that she is supposed to swallow. This leads me into another accomplishment for Kaylee. This summer one of her nurses worked REALLY, REALLY hard at getting Kaylee to swallow, and she had some luck! Kaylee had good and bad days with it, but Melody stuck with her and throughout the summer Kaylee would have days where she could swallow about 6-8 bites of pudding or yogurt. SO, because Kaylee is doing some swallowing, we are going to try and see if she'll be able to swallow this new medicine. If she can't, we'll just continue on without it for the time.  Kaylee's nurses continue to work really hard on the swallowing issue, but Kaylee is so darn stubborn!! She tries them with every ounce of herself. I don't want to say we've gone backwards since this summer, but we certainly haven't gone forward with it. She has a really hard time swallowing her own spit, so she is constantly a wet mess. To make matters worse, her mouth hangs open so all of the saliva just runs out. Kaylee has also developed the terrible habit of pushing her spit out with her tongue. Most frustrating about this, is that we know she can do swallow sometimes. Troy has worked and worked with her and she'll do it for him, but the second he stops reminding her, she is back to pushing it out of her mouth. We have spent a lot of time pondering how we tackle this obstacle. Our doctors assure us that she will be able to swallow at some point, but it is so hard not to get frustrated and lose patience. So many of Kaylee's struggles would be solved if she would JUST SWALLOW!!!!

Alrighty, so in trying to go back and catch up and stay somewhat focused, I think I'm gonna go month by month...

August: Kaylee continued to work hard on her physical therapy. Most of this focused on climbing up steps and going down steps. She also worked on stretching out her hip flexers and her hamstrings. Again, because she is so stubborn she'll fight certain nurses on this. There are some nurse she knows she can't get by with it, but others are still too tender-hearted and Kaylee plays them like a fiddle. In time though, they've all toughened up on her and it has helped her tremendously. Jane Brown, her physical therapist, is so pleased with Kaylee that she is only coming once a month now! Kaylee continues to wear her AFOs (ankle braces) to help stretch out her ankles and help with walking.  OH, how could I forget, Kaylee also spent a lot of mornings visiting Great Grams and Gramps across the street. She'd walk over and visit with them each morning. She loved it and so did they. The biggest change in August wasn't with Kaylee though. Dylan started Kindergarten in August. I'm not sure who had a tougher time those first weeks, Dylan or myself. I literally cried myself to sleep on several occasions because I was so worried about him! Troy would try his best not to laugh at me, but there were times when he just couldn't hold it. He kept telling me that in 10 years from now I'd find it funny too. Dylan has adjusted really well and is learning so much. I'm always amazed at how much he learns in such a short amount of time.

September: Things stayed pretty calm in September. Kaylee's routine stayed pretty consistent. The girls from the AEA continued to come twice a month to work on fine motor skills and her communication. We are still working on sign language with Kaylee, but we are also looking at other options. As great as sign language is, it only works when you know it. The reality is that if Kaylee is out and about and is trying to communicate through sign, how many people really know it well enough to communicate back with her? Kaylee's SLP (Speech Language Therapist) has provided us with different options we can look into for communication devices.

October: Things turned upside down for part of this month. We lost a couple of AMAZING nurses in October. Melody, who I mentioned earlier took another job closer to home with better benefits. She did so much good for Kaylee. Melody could really push Kaylee, but Kaylee always respected Melody. They became VERY close to one another and I know it was a tough decision for Mel, but she has to take care of herself too! We had another nurse leave us for another nursing position with hours that better fit her needs. It was tough to lose two nurses who Kaylee had gotten attached to. It was also tough on our other nurses. Have two nurses leave within a couple weeks of each other left a lot of option shifts on the schedule. Thankfully, we have some WONDERFUL gals who stepped up and worked CRAZY hours to get our schedule covered for us.  It is so hard on Kaylee to get used to new nurses.  I was worried about having to take time off of work because we couldn't get coverage, but mostly I was worried about the gals who were covering all of these extra shifts. It doesn't take long for them to get burnt out and leave. I had these terrible visions of not having any nurses in November!

November: Our nursing situation continued to be a mess. We had about 2 girls trying to cover everything. It was nothing short of insane! We were having trouble getting new nurses hired, and communication with our nursing agency was lacking to say the least. Troy and I felt like we were constantly calling in to figure out our schedule. There was still that constant worry that we wouldn't have coverage, or if someone called in sick there was no one to fill the shift. After many calls and emails between the agency and us, it became evident that we had to have some kind of meeting to get things figured out. Troy and I were ready to start looking at different agencies even if that meant we lost the nurses we actually did have at the time. On a positive note, Kaylee helped decorate the Christmas tree on Thanksgiving day. She was so excited to get to put the ornaments on the branches. I got a good photo opt in when Dylan and her decided to play in the Christmas lights. They made some pretty darn cute Christmas cards!

December: We finally met with our nursing agency and had what Troy and I like to call a "Come to Jesus" meeting. We pretty much laid out everything we felt they were lacking. Things were bad enough they actually had 4 of their "people" come for this meeting to try to get things figured out. Luckily for us, our "new" day nurse, Stacie, was here for it and was able to help communicate some issues on the nurses side of things too. I can't imagine it was easy for her to stand up to her boss' but she did an awesome job of calling them on their faults. When the meeting was over we felt like we had a pretty good plan in place, but were still unsure if we'd see things actually follow through. I am happy to report however, that so far things have really worked out well!  Christmas was SO MUCH FUN this year! Kaylee couldn't wait to rip into her gifts. She had no time to waste waiting on anyone else to get their gifts open, she was all business. Naturally, she and Dylan (who am I kidding, me too) were spoiled rotten. It is so hard not to do! I really tried to have some control this year, but I think I might have let it go sometime between the 2nd and 3rd minute of shopping!

January: Yahoo, I made it! (Only 7 chapters later!) Kaylee turned 3 on January 14th! While there are days when we think time has flown by, there are still lots of days that it feels like this journey has been every minute of three years. It is hard not to get wrapped up in the every day things that come up, however, when I stop and think about all of the things that Kaylee has accomplished in three short years, I am speechless. Honestly, I remember when Kaylee was 3 days old and the doctor told us we may never bring her home. At that point she was so unresponsive and showing no signs of attempting to live. Now I look at this sassy, ornery, active child and I wonder how it is possible?!?!? This girl just walked maybe close to 1/4 of a mile out of the Mayo Clinic on her own and three short years ago she couldn't even breath on her own!! The human body is an amazing thing. She is a determined little thing and she isn't about to let you tell her how something is gonna be. She is in charge all of the time and we love every minute of it. Anyway...to celebrate turning 3 we had a Minnie Mouse party for her. She is OBSESSED with Minnie Mouse! We had Minnie Mouse cupcakes, Minnie Mouse plates and toys and napkins and clothes....etc. She loved her party!! I'm not sure how many times she made us sing the birthday song to her, but I know I sang it at least 5 times. Now that Kaylee is 3, she is eligible for Preschool! However, with it being the middle of winter, Troy and I were were concerned about sending her into the school with all of those winter germs. Well, let me clarify. The teacher in me didn't consider the germs. I just wanted her in a preschool setting so we could be challenging her cognitively so she doesn't get behind. Troy, the rational one, reminded me that it would be the dead of winter and Kaylee may not be able to handle fighting off those germs. Good thing he thinks logically because I REALLY don't want her back in the hospital again. Lucky for Kaylee, we can bring preschool to her. Through the school we have been able to to arrange home-bound services for her. She has a teacher who will come one day a week for an hour to provide pre-k instruction.  We were able to get an iPad for her, through the school, and a communication app to help her start communicating with others. That will be her focus during her "school" time. I'm excited for the possibilities this could bring. We trialed a Dynovox system, but it was so complicated I wasn't sure how she'd ever get it figured out. Luckily we don't have to worry about it now.

Alright, we are now ALMOST caught up! On Wednesday we headed back to Mayo for our followup appointments for Kaylee. We met with out ENT doctor first to evaluate where Kaylee is at now. Our goal is to begin taking steps to remove the trach. At this point we are waiting to remove tonsils and adnoids. We have tentatively set this date for June 7th. We'll have it done there, just so we can stay consistent with doctors who are providing care for Kaylee. The downside to having the surgery at Mayo, is that they'd like her to stay close for 10 days. There is always a risk with bleeding after a tonsillectomy, only 2 - 4%, but kids with trachs have a tendency to bleed more than others. We haven't decided if we'll stay the whole ten days or stay for just a few and then go back for our follow up appointment. We could always contact a doctor around here who would be willing to care for Kaylee if she were to start bleeding. The other thing to consider is what happens if we get 1/2 way home and Kaylee starts to bleed?!?! So needless to say, we have some things to think about before June.

Following her appointment we headed to Aunt Brandi and Uncle Matt's house to stay the night. Dylan and Kaylee had a ton of fun playing with their cousins, Luke and Evan. We finally got everyone settled down and ready for bed. This lead to a first for our family...in the past, when we travel, I usually sleep with Kaylee in case something comes up in the night. It isn't that I wouldn't wake up and hear her, but I always worry that I'll sleep to heavy or that her alarm will go off and by the time I get to it to turn it off, half the house will be awake. Troy and Dylan usually end up in one bed and Kaylee and I in another. However, because Kaylee has been doing so good at night, we decided to try Dylan and Kaylee together in one bed. This has NEVER happened before, so it was a pretty big deal for us. Kaylee and Dylan loved it. They giggled and played for a while until we finally had to get after them! It was so awesome to look over and see the two of them snuggled up together sleeping hard. To make things even better, Kaylee didn't need any attention that night. I never had to suction her, and she never set her alarms off! Yahoo!!

The next morning we had to be at the clinic for an 8:15 X-Ray of Kaylee's spine. This is something we do every 6 months in order to monitor her scoliosis. We take the X-Ray with her back brace on to be sure that it is helping with her curvature. The X-Ray looked great! Dr. Stans, the orthopedic surgeon, was very pleased with what he saw, and was happy with how well Kaylee was walking. We were a little concerned that Kaylee was outgrowing her brace as it was starting to rub on her g-tube. Dr. Stans didn't think we needed to totally replace the brace just yet, but it did need some adjustments. Luckily for us, we had time between appointments that we were able to run and get those made. It is working great now, but when we go back in June, we'll have another brace molded. Most braces usually last for a year and a half, which is right where we are with Kaylee.   Following the adjustments we went to see our physical medicine doctor. Dr. Skinner checks over Kaylee's physical abilities. She suggested we keep having physical therapy at least once a month just to stay on top of some of her stretches. Finally, we got to see Dr. Selcen, Kaylee's neurologist. We are always excited to see her and see how she reacts to Kaylee! As we expected, she was thrilled with where Kaylee is right now. Kaylee put on quite a show for her. I couldn't help but laugh at some of the attitude Kaylee was throwing out there. Unfortunately, they still have not been able to find Kaylee's genetic mutation. She did mention that they plan to go back and double check some of the subunits they've already looked at. It won't really change much for Kaylee, but it will still be nice just to know where the actual problem is originating. Dr. Selcen decided to increase the dose of the study drug (3,4 DAP) by a 1/4 of a tablet a day. It isn't a huge increase, but Kaylee has made so many improvements since being put on the drug a year ago, that we are hopeful it will help her out even more.

SO, while this trip wasn't overly exciting, I think we'll make up for it in June. We'll have some packed days ahead! I'm not really looking forward to Kaylee having to have surgery again, or staying the night in the hospital, but if it puts us that much closer to removing the trach, then I'll happily do it.

Do you remember in the beginning of my post how I mentioned that "life" has kept me from updating?? Just so you know...I started this post on Friday night and it is now Monday! Interruptions this time: putting Kaylee to bed, laundry, grocery shopping, Dylan coming down with pneumonia (YIKES right?) and work! I've learned my lesson though...6 months is WAY too long to go without an update! I'll leave you with some pictures of Kaylee and our family over the last little while!




 Dylan and Kaylee posing for our Christmas card
 Dylan and Kaylee playing with one of her new birthday toys!


Kaylee all ready to go see Grandma Joyce. She had to pack her bag full of toys to take on the "trip".


















                                                             Kaylee is 3!!!!

Here are some of my FAVORITE pictures.... the first one is Kaylee and Dylan starting the LONG walk from the clinic to the truck. This is the first of the two VERY LONG hallways she had to walk down. The second photo is of all three of my loves making the long walk, and the final picture is Kaylee at the very end of the last long hallway! She did it ALL BY HERSELF! There are not words to describe my joy in watching my daughter do something I wasn't sure we'd ever see!


Just so you know....I had a few more interruptions before I could even finish this post tonight! Such is life in the Hoepker house. I wouldn't trade it for anything! Although, if someone wanted to interrupt me with a glass of wine and a massage, I'd take that interruption without complaint! :-) 
Happy Living!