Family: forever, for always, and no matter what

Thursday, July 28, 2011

Are We Done Yet?

Hey Everyone! This is gonna be short and sweet because I am one tired Mama!!

We arrived in Rochester LATE Tuesday night/Wednesday morning. Luckily the Smith Inn (my sister's house) still had a vacancy for us. We tried to get everyone settled and to sleep (again) so we could be up and ready for a 9am appointment Wednesday morning with a Pediatric Gastro doctor. We needed to meet with him prior to the PH Probe just to discuss what symptoms Kaylee was showing that led us to believe she was having issues with reflux. My sister had told me she was anxious for us to meet the doctor because she couldn't quite decide how to take him. So after about 5 minutes of having seen the man, the only thing I could think of was "Daddy Warbucks" from Orphan Annie. The guy looked just like him! Anyway...he was great to discuss and explain things to Troy and I, but you could tell he was a very "scientific" kind of guy...but he did have a good sense of humor. He decided, from what Troy and I had told him, that after the PH probe was done, he wanted Kaylee to start taking Pepcid at bedtime every night. This was something Troy and I were both hoping we could try, just to see if it will help her out.
So the PH probe and Endoscopy were scheduled for today, but I had to wait until 8:15 last night to find out what time we were to report to St. Mary's Hospital. Naturally, 6:30 we were checking in. Anyone who knows us knows that the Hoepker's are NOT morning people. I am especially not a morning person after having slept with Kaylee the night before! Sure, she cuddles, but she also pokes you in the face and pats you and claps, and tries to say "Hi" just to get you to open your eyes. OR when you wake up at 3:45 in the morning to find out that she has had a REALLY nasty diaper that requires a full PJ change. UGGHHH...5am came way to early for me. Anyway...the Endoscopy went well as did the placement of the PH probe. The aftermath has been a bit trying though. We have to keep Kaylee from trying to pull the probe out, otherwise we'll have to start all over. The probe is placed in the esophagus and has a tube that runs out of her nose and hooks into a monitor. Imagine trying to keep a 2 1/2 year old from pulling on it. Well, Mayo has imagined it, so they use something called "No-Nos". They are little triangular shaped "braces"  to place around the arm so the child can't bend at the elbow and ultimately pull the tube out. They are a really great idea, unless you are dealing with Kaylee. Honestly, for a child with a muscle disorder, she can sure wiggle her way out of those things. In fact, I just looked over and noticed one hand was completely free. Wouldn't that have been great; I stay at the hospital with her ad she pulls the probe out! Luckily, I was on the ball and got it put back on.
Kaylee is resting well right now and I hope that is the pattern for the night. Troy and Dylan headed back to Brandi and Matt's house tonight while I stayed here. Poor Dylan cried as they left. He did not want his sister or his Mama staying here without him. He hates when Kaylee is gone and I know he'll worry about her until he sees her again in the morning. He is such an amazing child, always doing what it takes to make sure Kaylee is o.k. We have a picture frame at home with the following saying: "Why we try to teach our kids all about life, our kids teach us what life is all about." Every time I look at that frame,  I can't help but think of Dylan and Kaylee's relationship and how much it has taught me. While I hate these trips, and the inconvenience of packing half of the house, and all of the struggles that lie ahead of Kaylee, I wouldn't trade this journey for anything...I am thankful for the lessons I've been taught, and most importantly, the bond my family has undergone. We are blessed.

I'll try to update more later this weekend when he get home. Thanks for all of the thoughts and prayers. Please pray for an uneventful night here at St. Mary's and for a smooth ride home tomorrow!!

Monday, July 18, 2011

SUMMER FUN!!!

Hey all! Sorry again for the lack of up-dates on Kaylee! We have been SUPER busy this summer with the big move. BUT, we are finally moved and pretty much settled in to the "new" house. It is so nice to have the extra room. Kaylee is loving all the space she has to explore. She'll walk all over the place just checking things out. Dylan thinks it is super cool that we have a long hallway he can race his trucks up and down. I feel like we finally have enough room that we aren't crawling over each other just to get around in the house, it is a GREAT feeling. I'm sure Troy will begin enjoying the new house when I finally leave him alone about all of the little projects that need to be done. :-)

So June was kind of a blur here. I had to work a couple extra days at the end of the school year rewriting curriculum. Lets be honest, I would have rather walked across hot coals than have to start my summer off this way. My brain was on overload and was seriously ready for a vacation. In the middle of the month we made our way back to Rochester for our 6month check up. Dylan LOVES these trips because he gets to stay in a hotel and gets to eat breakfast out. I wish I enjoyed staying in a hotel as much as he does, but the beds don't treat me as well as they must treat him.
Kaylee also have to have some blood-work ran with this visit. Because the new med (3,4 DAP) she was started on in January is a study drug, and not approved by the FDA, they have to closely monitor her. If any of you remember our Caring Bridge posts, you'll remember that getting blood from Kaylee is just about impossible. Well, to be in true Kaylee style, that process was nothing less than a nightmare. I was trying to keep her pinned down while two "blood suckers" attempted  to get blood multiple times, from multiple veins. I wasn't sure who to feel worse for, Kaylee was understandably upset and the two gals were feeling terrible about not being able to get her blood. They tried to find another person to help, but were unable to. Finally, they were able to get a small amount of blood, and hoped it was enough to run all of the requested labs. Naturally, this was how we started out the morning, so the mood was pretty much set...for Kaylee and I anyway. Troy and Dylan had gone to find something for breakfast, and were both in great moods!
We met with Kaylee's orthopedic surgeon to check on the scoliosis in her back. Things are pretty much staying the same, which is great news. She will continue to wear her back brace during the night and at nap time. We'll check back this winter and hope that the curve hasn't increased any. If it does, we'll have to become more aggressive. She might have to wear the brace more often, or we'll have to look at other options like casting. I'm praying things stay the same, because I can't imagine Kaylee tolerating her back brace when she is awake, and I don't want to imagine the trials that would come along with a cast. At this time, we have no reason to believe that we'll need to be more aggressive. With Kaylee walking so much, it really helps build up those muscles in her back, which also helps with the curvature.
Later in the day Kaylee was scheduled to have a swallow study. Troy and I both knew we wouldn't be able to follow through with it because she would have had to swallow 10 CCs of something. 10 CCs is really nothing at all, but for someone who doesn't swallow, it is a MASSIVE amount! After talking with a doctor about the whole deal she agreed that it wouldn't be a good idea at this time. Instead with met with an amazing occupational therapist during this time and did nothing but play with food. We painted mirrors with pudding, held goldfish crackers in our teeth and counted, chewed on straws, and participated in several other crazy things.  Kaylee was in heaven during this appointment and Dylan enjoyed this style of appointment way better than the others.
We had the rest of the day open so we visited Aunt Brandi, Uncle Matt, Luke and Evan at their house. We had dinner with them and then all the kids had time to play. Within three minutes of leaving to head back to the hotel, both kids were fast asleep!
On our 2nd day of appointments we met with Dr. Selcen. She had rescheduled the appointment so she could see Kaylee at a better time. By that I mean that Kaylee has some really good times during the day, and she has some pretty crappy times during the day. 10:30 is a great time for Kaylee. She has finished her morning feeding and has had enough time for it to settle, and is ready to play. So, we thought this appointment change was great. Kaylee started off throwing a fit, and I thought for sure this would be another nightmare to live out, but thankfully, she settled down and started showing off for Dr. Selcen. She walked all over, pointed out things Dr. Selcen asked her to, signed several things, and even tried to take off with one of Dr. Selcen's toys. Dr. Selcen was very pleased with everything she saw, but not surprised by any of it. She knows that Kaylee is able to do some amazing things, and it will just take time to get there. She did decide to increase her dose of the 3,4 DAP, which we started that next day. Kaylee seems to be tolerating it just fine and continue to make improvements with her eye tracking and tongue movement.
We had one last appointment, which we kind of just threw in, to see if we could get some questions answered. Troy and I have both been wondering how much longer Kaylee will actually need her trach. It isn't that we are in a huge hurry to get rid of it, but we also don't want to leave it in longer than it is necessary. Kaylee is beginning to get frustrated when she can't express herself, and we can't help but think that when the trach is gone, she'll be able to vocalize even more. When Kaylee was originally at Mayo she was seen by an ENT doctor, Dr. Coffer. She was great to work with, so we decided to get her opinion on things. As always, she was very approachable, and understood our stand point very clearly. She took a quick look at Kaylee's airway...which was shown on a screen in the room. Dylan thought this was AWESOME, Kaylee, not so much. She didn't care to have a long tube shoved down her airway, and following the procedure, she did some major finger shakin' at Dr. Coffer. It was hilarious. Anyway...after looking at her airway, she thought things looked pristine, her words, not mine. She did notice some swelling in the back of Kaylee's tongue, which she thinks could be do to reflux. Even though Kaylee has had a Nissen done, she still throws up very regularly. Dr. Coffer suggested that before we try capping the trach off, we need to be sure that if she is refluxing, we have it under control so we don't cause her to aspirate. One other minor obstacle might be Kaylee's tonsils. It isn't that they are really big, but where they are located in her throat, they are slightly obstructing her airway. With those out of the way, it is one less thing for her to have to work around when breathing. Troy and I are both o.k. with the tonsil removal, because we know that with Kaylee, they will eventually cause a problem! I think it is Murphy's Law! We aren't sure when/if they'll remove them, but I'm sure we'll be looking more seriously at it in the next few months. Beyond those two things, Dr. Coffer felt confident that we might be able to remove the trach in about ONE YEAR!! Troy and I were both shocked and thrilled. If, after we start the process we realize that Kaylee isn't ready, then we are more than willing to leave the trach in, but if she's ready, I don't want to be holding her back. SO, following that appointment we scheduled another one for the end of July. We'll head back to Rochester on the 27th to have a PH probe placed in her esophagus. They'll monitor her for 24 hours to check the amount of acid in her stomach and to see if she is refluxing. If she is, we'll have to start her on a med to help control it. They usually use something like Zantac or Prevacid. Once we have that in order, we'll begin capping the track off during the day, and she'll have to use her mouth and nose to breath. If she can tolerate it well, then we'll try it at night, under watch at a hospital. This will all take time, and we don't want to rush anything. We want to be sure this is the right decision, and she can handle it. BUT, if she is ready, we'll be able to remove the trach and let the stoma close up. As excited as I am about the possibility of no trach, it also scares me to death. Funny, the idea of ever putting the trach in scared me to death,  and made me sick to my stomach! I guess you just can't make me happy huh!

The rest of June was spent pack up the house and preparing to move. Not the ideal way to spend summer, but we dealt. The weekend of the 4th we loaded everything up and headed west. After several long nights we finally got things put in their places. We had to spend a few days without appliances, but with Nana and Papa right across the street, we just raided their house and used their appliances! Good thing we have cute kids, they didn't seem to mind the constant intrusions. Finally, the appliances arrived just as our family from MN and MO arrived. We spent an awesome weekend with everyone celebrating birthdays and playing T-ball. We were super sad to see everyone head back home, but are looking forward to seeing them all again next July, when we celebrate Andrew and Ashley's wedding. From what I hear, there is going to be a very handsome ring bearer and a princess of a flower girl....:-)


Well, I hope you are all enjoying your summer! I'm feeling a little like it has passed me by, but such is life. Hopefully things will go well at Mayo next week and I'll have more to report.

 I'll leave you with some pictures of our summer...enjoy~ 



Dr. Selcen, Mama, and Kaylee

















            A little pudding painting




Dylan playing T-ball




Kaylee's funny face! She was trying out some sweet and sour sauce, and loved it!






Fun in the dug-out~


A little light reading on a Sunday morning.