Mam-maw

Our world was changed in such a big way on Thanksgiving morning when my mam-maw had a severe stroke.

For the last 5 months our family, mostly my mom & her brothers have been planning a surprise birthday party for her. She would have been 80 on Christmas Eve. At this point it was decided that we would cancel the party. A couple days after running test and determining the severity of the stroke we were told that she would not ever be able to care for herself. The stroke left her unable to move her right side, unable to speak or swallow. She was limited to nodding her head and squeezing people's hands. Mam-maw did a wonderful thing for my mom & uncles, she took what would have been one of the hardest decisions they would have had to make out of their hands. Her wishes were that extreme measures not be taken to prolong her life. In this situation, it meant that she did not want a feeding tube to sustain her when she wouldn't be able to do what she loved most, be with and love on her family. It was explained to her what was going on and she nodded without hesitation that she did not want a feeding tube. She was ready to meet our heavenly Father. Mam-maw was my last biological grandparent on this earth. I still have other grandparents, Justin's Granny and so many other in my life that love on me like a grand parent, but it is so hard to know that I will never have the chance to sit and talk to my mam-maw again this side of heaven. As I sit here watching Landon & Madison sleep, my heart aches for them and they will never get to personally know this wonderful woman. She left such a legacy for our family and anyone she came in contact with. There are so many memories flashing through my mind. I know she is rejoicing and is whole now. No more pain, no more confusion, but oh mam-maw how I wish you were still here. I know it's selfish, but you are already missed so much. You and the many things you taught us will never be forgotten. We will pass on your recipes, make Popsicles for our children, I will learn how to make your rolls, and Rice Krispy treats that only taste good when they're made by you. I will teach my kids Nertz and how when shuffling cards, if you shuffle them more than 3 times they're all back where they started. I will watch Mrs. Doubtfire and always think of you. I will make my kids and grandkids and great-grandkids always feel welcome and that my home is a safe space whenever they need it. I will think of you when I see Mentos and when I hug a baby and give them loves on their cheeks. I will strive to know God the way you did. I pray that I can leave even half the impression on this world that you have and no matter how this world changes that I will stand for what I believe and make sure my kids and grandkids see that. Last, but certainly not least, I will have a wooden spoon in my kitchen. ;) I love you Mam-maw!! Tell Pap-paw, Grandmother and Pawpaw I said hi and help them love on my babies until I see you again!!

Shameless Plug

I'm back at TCH tonight with my two boys. As much as I hate Landon being in the hospital, I absolutely love watching him sleep. The other night he started talking in his sleep which I had no idea he did. It was pretty entertaining!! And just now he and Aiden stretched or took deep breaths or something at the same time. No one else who love those sounds like me and it put such a big smile on my face. I love my babies so much!! There are days, more than I would like to admit, that I would love to ship all three of them off to have just a few hours to sit and stare at the walls and enjoy the peace. That being said anytime they are gone or happen to all be asleep I keep thinking I hear them. Or if by some miracle I'm in the car alone I constantly have mini panic attacks when I look back and see no one is there. For a moment I think I've left them somewhere and will be on the evening news, my heart drops and then I remember... they're home with Justin or YaYa. I'm not losing it, I just forgot what silence is like. There isn't much news today. Landon continues to improve. Today he had 4 visitors and I'm told his first thing he said to each of them was "Where's my present?" We obviously have some work to do on teaching Landon to be gracious and not greedy and just how to not be so selfish among other things. Thank you so much to those who have come by. We truly appreciate each of you who have taken time out of your day to come visit us and our little man. A Pulmonary Function Test(PFT) has been ordered for tomorrow and depending on how that goes and how his sputum culture is looking there is a slight possibility we could go home tomorrow!! We're hoping for the best, but preparing for the worst. Even walking laps around the hall Landon is getting very short of breath. If you know him at all you he's always going 90 to nothing. While he always gets disgustingly sweaty within minutes of running around or playing or sitting, he never really seems to be out of breath, so this shortness of breath is not normal for him. There will be a time in his life where that becomes normal, but we pray there is a cure before he reaches that point. That being said, here's my shameless plug. On May 9th, we will be participating in a Great Strides walk at the University of Houston to raise money and awareness for Cystic Fibrosis. Last year we had a team of 10 walkers including our kids and my nephews. We would love to have more people to come walk with us as Team Landon or sit in the shade if you're unable to walk and just be there to show your support. It doesn't cost anything to walk, but if you could make a donation it would be greatly appreciated. Our goal this year is to raise $5000, but whatever is raised will be that much more that the CF Foundation has towards finding a cure for Cystic Fibrosis. The research funded by the CF Foundation is making such exciting accomplishments towards finding a cure, but they rely on people making the donations to perform that research. There is no government funded research being done to find a cure for CF because it does not effect enough people to justify the cost. There is actually a drug combo in the pipeline that seems to be helping some with people who have the same mutation at Landon, so this is such an exciting time to be involved with such an amazing organization!! Please consider joining us on May 9th and/or making a donation to show your support for Landon and help us reach our goal. You can follow this link http://fightcf.cff.org/site/TR?px=1321467&pg=personal&fr_id=3505&et=K6CxqPx10zSAguJ2tgrrEw&s_tafId=21352 to get to my Great Strides page. From there you can donate or join the team and register to walk. Again I thank you all so much for your prayers for our little family!! In the midst of everything we know that God is in control of our sweet boy and He alone will be glorified in all that comes from this disease. I know that God has such amazing plans for Landon using his Cystic Fibrosis and it's fun to already see how Landon touches everyone he meets!!

Getting in a Groove

It's been a long, but good day. Landon and Aiden slept pretty good during the night aside from Landon fighting me and the RT's when we would try to do his breathing treatments. He was T-I-R-E-D!! At one point during the night I noticed an e-mail on the hospital's MyChart site that stated Landon was scheduled for a PICC line placement at 2:15pm. I questioned this because that meant he couldn't eat all day I was also confused because they said they wouldn't place this until Tuesday. They must have all thought I was crazy because it wasn't until just now it hit me that today is Tuesday. I'm sitting here laughing at myself because you know what they were all thinking, "Bless her heart." Which is code for "You're so stupid." Anyway, PICC line is in and G-button was been replaced and these happened at 9ish this morning, so woohoo for getting bumped up. Landon woke up this morning freaking out because he did not want to have his g-button replaced. He was so fearful!! After the procedure we'd been back in the room for a while when he said, "Mommy when are they gonna fix my G-button?" I responded that they already did and explained when it had happened. His response, "Really!! Mommy i wasn't even scared!!" Hopefully this has put some possible future fears to rest when it comes to his g-button. Time will tell. If you haven't heard already, we did receive a diagnosis today RSV. Three letters any parent doesn't want to hear, but when your child has a lung disease the fear is that much more. I haven't had time to sit down and get more information on RSV and CF, but that's probably good. Other than trying to get into a routine, not much happened today. Daddy and Madison came up and Madison was sooo excited to see all of us. Her sweet smile will brighten anyones day. If you didn't know it already, my kids are very protective of each other. While Madison was here the nurse took out Landon's IV and this was an opportunity for Landon to cry some crocodile tears and work on his drama. Madison was definitely giving the nurse the stink eye the entire time. Anyway they played watched a little TV and then some more visitors came with goodies!! This entertained everyone for a while until it was time for the party to end and the visitors to go home. Speaking of visitors, Landon is keeping track of how many people come to see him by making a chain. So if you come, make sure you write your name on a slip of paper so Landon can work on his pattern making and count how many people came to see him.

Help him make a fun memory from this stay. All visitors are welcome anytime!! Until tomorrow...

It Hit Fast and Hard

I haven't blogged in quite a while. I've wanted to and had many thoughts that I wanted to write down, but never seem to have or make the time. With the exception of the midnight hours while sitting in the hospital with Landon, which happens to be where I find myself tonight. Landon made it almost 3 years without a "tune up" stay in the hospital, but this stay could not be avoided with at home antibiotics. I've been updating the world via Facebook, the past 24 hours, but it's too hard to put everything in a small post that gives everyone a clear idea of what is going on in our world. Some of you out there may have forgotten that Landon has Cystic Fibrosis(CF) which is a life threatening genetic disease that primarily affects the lungs and digestive system. In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs which leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients. Fifty years ago very few children with CF lived passed elementary age. Today the average lifespan is 37 years!! While we're still waiting for test results to give us a better idea as to what caused Landon to be hit so hard so quickly, we do know that he has a severe respiratory infection. Madison and I were fighting a cold a few weeks ago and it seemed that we managed to keep Landon, but this past week he began having a runny nose and minor cough. We bumped up his breathing treatments and CPT from twice daily to three times a day. This means that at least 3-4 hours a day this week Landon has been hooked up to a nebulizer or his vest. I believe around Thursday his nose began to get some color to it and by Saturday morning he had a very wet cough and an absolutely disgusting nose. Saturday night the fever started, Sunday morning he woke up sounding a little froggy and had rapid breathing. When he woke from his nap late Sunday afternoon he had begun showing signs of respiratory distress. From there we contacted TCH and late that night were admitted. This is our first experience with something progressing so quickly when we were doing everything we knew to do. It was kind of scary simply because it's been 3 years and 2 more children since we were last in this situation. Even then our last hospital stay was a planned one because Landon was having his G-button placed, you all remember Dr. G Buttons, right? All this brings us to today. Landon is wiped out!! Poor thing got little sleep last night since he and Justin spent most of it in the ER waiting on a room to become available. He is receiving Albuteral via inhaler every 3 hours, CPT every 6 hours which consists of 15 minutes of "legal beating" on his right side followed by 20 minutes in his vest, twice a day at those CPT sessions he gets his Hypertonic Saline via nebulizer and once a day with a CPT session he gets pulmozyme via nebulizer. He has also now started a nasal Saline wash which he is not a fan of so it should be interesting adding this to our daily regimen at home. He is on 2 IV antibiotics Tobramycin, once every 24 hours, and Ticarcillin, given every four hours. He's currently getting these through his 2nd IV, somehow the first one came out during the night last night, but in the morning he will be getting a PICC line as long as he continues to be fever free. While they are putting in the PICC line, they will be replacing his G-button. It normally lasts 2 years, but he's had his almost 3...it's time to switch it out.

I've always tried to be very up front with Landon on any procedure that was going to be done whether it was just getting a shot or having surgery. I don't think he really remembers when the G-button was originally placed, but this evening he had a little freak out moment and all the sudden said "Mommy, are they going to cut another whole in me?" (Insert knife and twist) I had to stop and explain that he was going to be asleep and the doctors had special tools to take out his current button and put a new one in. He would be in a deep sleep so it wouldn't hurt, but he might be a little sore tomorrow. He is so fearful about this, so I'm wondering if he's remembering a few months after his original surgery when he had to have it replaced and they did it in the doctors office without any sedation. I'm praying there isn't too much pain afterwards to possible replace the past experience. In the middle of this illness, Landon hasn't been eating well the last few day and has lost a little over a pound. This may not seem like much to you or me, but we have worked really hard the past 3 months to gain that pound and for it to be lost so quickly is really devastating for me. That pound took us from 43 percentile BMI to 22nd percentile. The goal is to get and keep Landon at the 50th percentile or higher. Studies show that no matter how bad his lung function down the road, him having a strong nutritional start is very beneficial in prolonging life. His breathing is still not good, but he's staying being between 90 and 95 on his O2 sats. He does seem to be getting a little more like himself, but still has a ways to go to feel 100%. I know this blog jumped around, but it should give you a good base to be able to update you for the length of our stay. Through it all, this little boy is a fighter and always seems to say just what I need to hear to calm me even though he has no clue he's doing it.