Family: forever, for always, and no matter what

Friday, July 20, 2012

A Traveling Summer

I'm sitting here at the table listening to my kids sing as they play with putty, I am BLESSED!

I'm gonna climb on my soap box for just a minute, and I promise, I'll probably never do it again. It isn't really in me to "speak my mind", I'm normally the type keep my mouth shut, and keep the peace. However, something hit me today and I just feel like I need to vent, so sorry about your luck!
There are some sad things that have taken place in the last two weeks. Here in Iowa we have two young girls who have gone missing, and today a Colorado man took the lives of several people who were at a movie theater. I've read many posts about both of these situations and the thing that has struck me most, is the amount of judgment taking place.  It is probably the easiest thing in the world to do. We all have our beliefs and ideas and often times wonder why someone doesn't agree or think like we do. It happens, I'm guilty of it, I'm sure we all are.  I remember VERY CLEARLY three years ago, one of the biggest worries in my life, was that of being judged. Kaylee had joined our family, and instead of being a very positive mom, I was devastated to say the least. I had had a dream of what my family would be like when our second child arrived. I thought about dance lessons if this baby would be a girl, thought about the fun both kids would have at daycare, the perfect family picture hanging on the wall....what I got was exactly what I had dreamed about, it just looked slightly different than I had imagined and it took me a while to see that. While Kaylee was still in the hospital and Troy and I were traveling back and forth trying to be with both kids, I started to worry A LOT about being judged by others. I was truly doing my best as a mom but I was so worried that others would think I was failing. I worried the nurses would think I was a bad mom if I didn't go to the hospital to be with Kaylee everyday, I worried that friends might think I was a bad mom because I sent Dylan to day care even though I was gonna be home. Not that anyone ever dreams about having a special needs child, I had always thought I'd be the aggressive, positive mom. Reality was far different than that. I'm not proud of myself for this by any means, but it is what it is. I was a mess! I was scared and angry. Instead of being the mom who was trying to figure out what was wrong with my daughter and how to help her most, I was the mom feeling sorry for myself and doing a lot of crying. Luckily, I happened to be married to one of the greatest men in the world, who was just the opposite of me. He was doing everything I thought I'd be doing. He often talked me through those worries of being judged, and I remember making a promise to myself that I would try my best to not judge others. I know that what I thought I would be in this circumstance was not the case and I realized then, that until you are in the situation, you really don't know how you'll respond. So, I guess the point to this admission is that I've learned to pray in place of judge. My family saw the power of prayer first hand, and it worked miracles. Maybe praying rather than judging would make us much more powerful and successful? Just a thought! O.K., I'm stepping down from my box now!

The other night I started to blog about the events of our summer and suddenly I had about an hour's worth of rambling and side was a mess! So I deleted the "rough draft" and am going to give it another stab, hopefully this time with some sort of organization. I think I'm gonna try to go step by step through our events. Maybe that will keep me on track! :-)

Here we go: JUNE
On June 5th we headed to Rochester for follow up appointments for Kaylee, and also with plans for a tonsillectomy and adenoid removal. Packing for this trip was a complete nightmare because we weren't for sure how long we'd be staying.  At our last appointment with Dr. Coffer (the ENT doctor) she strongly encouraged us to stay in Rochester for a few weeks after Kaylee's surgery. With every tonsillectomy there is a chance of bleeding post op, and it seems that kids with trachs have a little bit more of a chance of this happening. She was concerned about was traveling and having a bleed on the road. Naturally, because I'm a worrier, I was seriously worked up over this. I didn't want to be away from home for 15 days (previous appointments and then the 10 days following surgery), I didn't want to be 1/2 way home and have her start bleeding, and I was freaking out about how she'd handle the surgery anyway. I spent a lot of nights trying to figure out how I was gonna make this work. Ya,  I'm a little OCD like that. Another issue was that Troy and I didn't want our in-home nurses to have to go that many days without work! So, Troy and I had kind of decided that if things went well, we'd stay for a few days after surgery and then head home, even though we'd have to drive back up in a couple weeks for a follow up. We were hoping Dr. Coffer would go along with that plan.
We got Rochester and to my sister's house were we stayed. The kids were VERY happy to be able to play with their cousins. Our first appointment was with Dr. Selcen, Kaylee's neurologist/CMS doctor. She was pleased with how Kaylee was doing, and Kaylee was very much a show off for her! She made a few slight adjustments with Kaylee's meds, told us they still can't find the 2nd gene mutation needed to identify the subtype of CMS Kaylee has, and we were on our way. Troy and I often laugh about how she used to be the BIG appointment and now ENT is the big appointment and Dr. Selcen seems so quick! Next we were off to see Dr. Coffer.  While talking with her about our concerns for Kaylee post surgery and feeling like Kaylee would do better at home with nurses who really know her, she also agreed that if Kaylee did well, we could head soon as we were discharged. Troy and I were both excited about this, but still slightly nervous. Dr. Coffer is amazing! She always considers the patient, their family, and their needs. Everything she does is individualized, and well thought out. We cannot brag on her enough...she is just awesome! After a quick check over Kaylee, and removing her left ear tube which was stuck in a nasty ball of wax, we were given the number to call to find out what time her surgery would be scheduled. I thought that since they usually take the young ones earlier, we'd have to be up early, but I was wrong. (That seems to happen a lot.) We didn't have to report until 11:30 the next morning. Once we got checked in and  hospital jammies put on, the anesthesiologist came back to visit with us. Troy and I both stressed that Kaylee is a very hard stick and often takes a flight nurse to get an IV started. He was confident this wouldn't be a problem and then suggested giving Kaylee a little something before taking her back. Of course I can't remember now what they gave her, but Troy and I were laughing so hard! She was a complete nut after the med. She kept trying to grab Troy's nose, but she'd miss each time and just die laughing. Seriously, it was funny! They let me take her back to the OR and stay with her until they had her out. It never gets easier leaving her, especially knowing that this surgery was a big one for her. Not only were they doing the tonsillectomy and adenoid removal, they were also taking a biopsy of her esophagus to check for reflux, and did a little further investigating into her airway to check for extra or swollen tissue. Once she was out of surgery they let us all go back with her to recovery. She was upset and crying and still kind of out of it and nothing I did made it better. That is a terrible feeling as a mom. Troy noticed right away that her teeth and mouth were bloody. Apparently, when they were trying to get to her airway, they knocked her front teeth loose. It is my guess that they were still a little loose from when she fell in March. They did call an oral surgeon in to take a look at her teeth. He felt they would tighten back up in time. Another thing that we weren't impressed with was the number of poke marks on her from them trying to place the IV. I think we counted 8 spots! I wish doctors would listen to us when we tell them she is tough. It is like it becomes their personal mission to prove to us that they can do it. We later learned that it took 2 doctors to get the IV placed.  Anyway, Dr. Coffer came in and said that things went well. She said her tonsils looked like they had probably had some chronic tonsillitis. Also, she noticed that while Kaylee was in a "sleep state" there was some floppy tissue up behind her epiglottis that tended to block part of her airway while sleeping. In order for us to try to remove Kaylee's trach at some point, she really wanted that tissue removed to help make her successful. The problem was that she couldn't remove the tissue then as it would cause too much scarring. We would have to come back later to have this next procedure done. It seems that with Kaylee, you try to fix one problem and it leads to another! Anyway....we got Kaylee up to the PICU to her room. She rested really well the rest of the evening and had a great night. We tried to stay on top of her pain with meds, and it seemed to work. The next morning Kaylee woke up and was ready to play! I couldn't believe her...she acted as if nothing had been done to her. She was dancing in her bed and being as silly as she could. I literally stood there open mouthed! I think we even shocked Dr. Coffer! She came in to check on her and was also surprised by Kaylee's behavior. She felt like we were good to go so we packed up. I thought it might be a good idea to give Kaylee some of her pain meds before we left so she could sleep part of the trip home. It was a good idea in theory, but then there is Kaylee who doesn't play fair. She slept for a total of 10 (yes ten) minutes the whole trip home! She was happy and cheerful the whole time. I seriously think this girl has super powers! Dylan on the other hand, slept for an hour and 45 minutes. I guess worrying about your little sister can be exhausting! He had a hard time letting Kaylee go back to surgery and was super happy to see her after. When we finally got home Kaylee headed straight for Red's kennel. She was ready to play with her puppy. We were very cautious with Kaylee the next few weeks and stayed away from asking her to swallow. We also watched how far we put the suction tube when suctioning so that we wouldn't stick her in the throat. She did awesome! It was like she was the poster child for a tonsillectomy!  The rest of June was uneventful, just the way we like it!

July had a fun and exciting start for us! Kaylee got to see her first fireworks! She loved it and we loved being able to take her to them. In the past we've opted not to take her because we usually have her overnight feeding started on the pump. We decided to start it late that night and take it. She kept trying to reach up and grab the fire works. When it ended she kept signing "more".  The next morning we headed to St. Louis for a family wedding. This was our first trip somewhere that wasn't centered around appointments for Kaylee! That doesn't mean Kaylee wasn't the center of attention for this trip though. She and Dylan were the flower girl and ring bearer in my cousin Ashley's wedding. We had to practice getting Kaylee into her dress several times because at first she didn't like it. One night I curled her hair all up  and put her in the dress to "practice being a princess" and she was hooked! She loved it all. The night of rehearsal was exactly what I thought it would be. Miss Kaylee wanted no part of walking down the isle with her brother. In fact, she actually plopped down in the middle and crossed her arms...she wasn't having it! After everyone else cleared out of the church, Dylan practiced with her a few more times and she decided it wasn't that bad. I was still a little worried that things would be different during the actual trip down the isle.  Ashley and Andrew (the bride and groom) took the kids to Build A Bear to make a bear. Dylan quickly picked out a bear and a St. Louis Cardinal's outfit for his bear. Kaylee wasn't so sure about the whole thing. She seemed a little creeped out by the un-stuffed bears. She finally got one picked out and wouldn't let anyone else help her carry the box out of the mall! Finally, it was the wedding day. She started out a little shy but when she saw Ashley in her dress she was really excited to be in her "princess dress". The bride and flower girl both looked fabulous! Troy stayed at the back of the church with Dylan and Kaylee and I went and sat at the front. When it was their turn to go, Dylan was very ready, but Kaylee, not so much! Troy got her started and pointed me out to her and that was all it took! She looked like she was floating down the isle. About the last three feet she bee-lined right for me. There was a hushed chuckle from all the guests. I couldn't have been more proud of both of my kids. They rocked! The wedding was beautiful and the reception had great food and a lot of fun dancing! We got home only to pack up a week later and take yet another trip! Geesh, I'm getting tired just typing about all of this traveling!

We returned to Rochester Sunday night just in time to celebrate my nephew Luke's birthday. Before making it to the party, we had to stop off and pick up Kaylee's new back brace. The company who makes it has some wonderful people working for them. Ross, the guy who made her brace, met us at 4:30 on a Sunday to make sure the brace fit appropriately before we had our 8am x-ray Monday morning. Kaylee's first brace was just a plain white brace, but Ross fixed her up this time! Her new brace is purple and has butterflies on it. It also has some pretty brigh,t hot pink velcro straps on it. She LOVED it!!! She had to carry it with her into my sister's house and couldn't wait to go to bed that night to wear it! We celebrated Luke's birthday and Kaylee even "ate" some ice cream. Our Monday started early with an 8am x-ray of Kaylee's spine. We put the new brace on and went into the room. Kaylee did everything they asked her to do and held super still while they took the picture. She used to cry and cry about have to do this, but I guess by now, she is used to it. Next we were off to see an oral surgeon. This was an appointment requested by Dr. Coffer. Because of Kaylee's muscle weakness, her mouth hangs open which has caused her to have an "open bite". This will more than likely lead to issues with her biting foods and could in fact add to trouble with her airway. Dr. Reick decided he wanted to take some x-rays of her mouth. At this point I was slightly frazzled because I couldn't imagine how in the world I was gonna gt Kaylee to go along with this. Yet again, my worries were for nothing. She was such a show off! She stood right up on the stool, held onto the machine, and bit down on the stick, just like they asked. Both of the x-ray techs couldn't believe how great she did. I was highly impressed with how well she listened and held still so they could do it. After viewing the images Dr. Reick decided that there is a procedure we could do to correct the bite. We would have to surgically place a device on her bottom and top jaw. It would have two little "screw holes" that would poke out of the bottom of her jaw and we'd have to "crank" them each day. This would separate the jaw and correct the bite, which would also help to open up Kaylee's airway. However, (there is always a catch) with her muscle weakness her jaw might continue to want to hang open which could then also cause the bite to return...thus meaning the procedure would have to be repeated, possibly years later. He wanted to do some checking with other colleagues to determine if this is something to be done soon, or if it would make sense to do it later. This could really help Kaylee when it comes to learning to chew foods and swallow them.  We are waiting to see what he would suggest and then we'll decide what we feel needs to be done. After that appointment we saw Dr. Stans, the orthopedic surgeon. After looking at Kaylee's x-ray of her spine he was very pleased with the curve and felt that we might be making some permanent improvements! In fact, he'd like our next x-ray to be done without the brace to see if the curve is really being improved. These are great strides for Kaylee and we are curious to see how those x-rays will turn out. I'm not really sure it will change much however.  If we decrease her time in the brace, the curve will get worse, so we'll probably continue to maintain the same plan we have in place. We were lucky enough to have a nice chunk of time before our next appointment that we ventured out and found a new place to eat lunch. The kids loved it! Kaylee really enjoys getting out and going places so she was having a blast. Our next appointment was for an esophagus x-ray. Troy and I were both a little confused on what this was for but we quickly learned it was a swallow study. We have tried and tried to do these in the past, but have always canceled them because Kaylee just doesn't swallow enough for it to show anything. This time was different though! Troy took her back and was able to get her to swallow enough for us to FINALLY get a picture of what is going on! I felt like doing a little dance over this accomplishment, but felt those in the waiting room didn't need to be subjected to it! What we learned is this: Kaylee is able to swallow, however, it is a very weak swallow. It takes her several attempts before she is actually able to make a complete swallow. The good news is that she is swallowing safely!!! The study didn't show any aspiration into her airway. The SLP (speech language pathologist) suggested we work on having Kaylee swallow "nectar-thick" foods. We'll try 3-5 bites at a time and give plenty of time for her to try to swallow it down. Once we feel she is consistently able to do this, we'll try to move onto some thicker foods.

On Tuesday we met with Dr. Coffer to go over the surgery plan. She was running behind and we waited over an hour to see her! Keeping a 3 year old entertained in a small room for over an hour is not an easy task. Kaylee finally gave in and took a snooze while waiting. Long story short, Kaylee would have surgery on Wednesday and then we will return in August to place a smaller trach and try to cap it off for a few minutes at a time. If she tolerates this well then we'll continue to cap it off at home. Once she can handle it being capped off for 8 hours a day, we'll then go back and do a sleep study to see if she can handle it being capped off at night. If so, we will then make a decision whether or not we want to pull the trach and let the stoma close, or keep the trach while we continue to work on swallowing foods. I HATE these decisions! I hated the idea of placing a trach and now I hate the idea of worrying about maybe removing it! Lastly, we met with a pediatric gastro doctor who looks like Daddy Warbucks from Orphan Annie. He is a very funny man! We met with him because the biopsy of Kaylee's esophagus showed that Kaylee is refluxing. He recommended that Kaylee continue to take Pepcid once a day. It was a short and sweet appointment, and we were grateful for that.

On Wednesday Kaylee went into surgery to have the extra tissue removed from her airway. They shaved tissue off of the back of her tongue and then used surgical forceps to cut away other tissue. She seemed to struggle more this time. Her afternoon was rough but she perked back up that evening. Later that night she was sitting up in bed and letting me read books to her. She was even playing around with Troy. We had a great surprise that evening too! We ran into one of the nurses who took care of Kaylee while she was there in the NICU. She came in to see Kaylee and was shocked by how big she was! I'm not sure why, but it made me cry to see her again. She was SO amazing to Kaylee and we always knew that if Lori was working, Kaylee would have a great day. Kaylee continued to have  a great night, sleeping well the whole time. Thursday morning we were discharged by 8am! It was one the quickest discharges ever!! We made it home in the late afternoon and Kaylee was more than ready to get in the house and play! She has continued to do really well again, and has only had a few doses of Tylenol. As I said earlier, she is AMAZING!

Today Troy went back to work and the kids and I went out for lunch with my parents. Kaylee again had a blast being out and about. She was doing a boogie for anyone who would watch her! We also took a trip to Walmart. As with any 3 year old, you wonder why you bring them along. That little turd kept trying to throw things in the cart! She absolutely cracks me up....Thanks Kaylee, you are a gift!!!

I'll leave you with a few photos of our little "princess" and her handsome brother!