What a long, strange trip it has been

As I sit here in Payson's hospital room I reflect back at our journey these past few years. It is amazing how time gives you a different perspective and appreciation for what you have been through. In my reflection I wonder how did we manage to juggle everything after Payson was born? It is amazing that as parents we were able to spend several hours a day with Payson in the hospital, manage to run a business and a household. It is amazing that in the beginning of this ordeal we refused to let our lives crumble and that we have managed to keep a "normalcy" in our lives. I stand in awe in my families amazing ability to grab life by the boot straps and carry on.

We all have our contribution to this normalcy, but there is one person who deserves more credit then others...he is the quiet center of our family, one who doesn't need to be acknowledged, but one whom should be. He is our steady rock, our smiling force and the glue that helps keep it all together. He is a person I don't deserve, but the man I am honored to call husband. Through everything we have gone through...a really tough first two years of marriage, blended family, new children, a medically fragile child, betrayal and demands of a business he has remained faithful, loving, kind, selfless and strong. When I lost my humor he found it. When I lost my temper, (and boy do I have one) he was e water to cool me off. When I have had enough he is always there to take over! He spoils me rotten and shows the kids how a real man is to love his wife. Everyday he shows all our children how important they are by stopping to listen to them and spend quality time playing with them, (he is the daddy I always wanted as a little girl! How lucky Margaret Ruth is!!!!) He demonstrates everyday to anyone he comes in contact with how kindness, love and selflessness look like. Honestly, I can't say enough about him; not because he is my husband, but because he is just an awesome human being. One whom I am lucky to know, love and spend the rest of my life with. Todd, you are a saint to put up with me and my antics, just ask my momma how much of a saint you are! You inspire me to be a better person. Your laid back, take a deep breath and laugh at yourself approach to life has kept our family from going insane. I love you so much it hurts and thank you for being you, (and thank your momma). I am honored, privileged and blessed to have you by my side. I don't deserve you, but am glad you thought I did!

Clap, clap, clap...standing ovation my love!

As the world turns...

Can you hear that? Do you hear the sound of the distant drums? We do and everyday they are getting closer!

Excitement is building around here! There are nurses whispering and wondering what's next for them. Phone calls between doctors, hospitals and equipment companies all trying to coordinate the next stage in Payson's care. All the while we are elated with reluctant hearts and scared what the future holds. The day is almost here where I will for the final time pull that life saving contraption out of my son's neck and throw it, stomp on it and bid a tearful goodbye. Can this be possible? Are we really here? Let me back up a month....

So, the last time I wrote we had just had surgery to remove a large piece of skin blocking his airway. After realizing the size of this mass we gained a whole new appreciation for the fight Payson fought just to try to communicate with us. If that skin didn't stop him...Nothing will! It took Payson all of 24 hours to heal before he was acting like Payson. Within days we were able to notice a difference in his effort to speak to us...there was no more effort, he was able to speak easily without breath force. It was exciting too see, but he had more in store for us. Right before Christmas the doctors decided to put in a smaller trach and cap the end of it, (close off the trach completely) and he did awesome!!! In the meantime he was weaning of his ventilator at night...2 hrs. to 4 hrs to 6 hrs. By the first week in January we were off the vent for 10 hrs. He rocked it! Then after a tough battle Christmas week to get him to eat when we got home Todd and I decided enough was enough. If he is hungry he'll eat if not he won't, but no snacks and we decreased his feed at night by 200. Slowly we all figured out that he could eat it was what we were giving him. So baby food was tossed aside and normal toddler meals were placed in front of him...He ate it...ALL!!!! Then one day we got to hear the sweetest thing again; his old man laugh! It is great and he can't do it enough to satisfy my desire! Everyone who has been in Payson's life these past few years we will ask if they have heard it and then Todd and I diligently try to make him laugh. As if those developments weren't enough my boy can talk. Not just babble crap he can talk! He is understood at least 50% of the time by others and 90% by me. I no longer have to interpret his words for people they can hear it for themselves! Not only does he talks he sings and sings and sings! If you tell him to tune it down he just gets louder; as if he is saying I was quiet for so long now you will have to listen! Despite our headaches it is a sweet sound, (but we are beginning to wonder why we wanted him to be able to talk). Then last week after making it to 10 hrs off the vent he went to have a sleep study. Todd said as far as he was concerned he felt it was okay, but the official results wouldn't be in for several days. So that brings us to the here and now!

So, Payson is eating full meals and grazing throughout the day! He is slowly going down on his night feeds thus the end of the g-tube is near too! The official results from the sleep study arrived today and well everything was NORMAL!!! So, now we let Payson cap all day for a couple weeks. Within one short month we should be checking into the hospital where we will bid goodbye to Paysons trach and spend the next three nights learning to live without one! Yes, we are here and yes I am nervous, scared, anxious and emotional over the whole thing but excited no less!

So, the end of our medical nightmare is near!

What was revealed

Yesterday was a very L-O-N-G day! We had to be there by 8:30, but they didn't take Payson back until 12. Trying to entertain a 2 year old in a room the size of a shoe is close to impossible, but we did manage to keep him and us sane. After an hour and a half the doctor came out to speak to us. She informed us that everything went beautifully! She did have to cut open more, about half the perimeter of his stoma (trach hole), then she originally thought which would require an additional day in the hospital. In the end she got the tissue, which was 1 cm, (which is significantly large in a toddlers airway), and was able to view his airway. She was happy with what she saw. She was so confident in his airway she decided to keep Payson off the vent that night...Yup, despite just having had surgery. Then she informed us that she wanted to begin capping trials the next day. If that went well we would go home doing capping trials then in a month cap him during the night while having a sleep study next month. If the results of the sleep study were normal...wait for it, wait for it...we would schedule D-E-C-A-N-U-L-A-T-I-O-N!!! WooHoo, I can finally see the light at the end of the tunnel!

Okay, so that plan is one Todd and I have longed to hear, but getting to that point would prove to be bumpier than we had hoped. First we had to endure the musical beds of the ICU. We arrived in Payson's room to be stuck in the smallest, brightest, loudest room in the unit. Yet, that wasn't the worst thing...the roommate had MERSA! Are you kidding me? Payson gets sick if you breath in his direction, but now you are confining him to a room with el sicko! GREAT! Yet, within a few hours the roomie left and we moved over into the corner of the room with more space! Literally an hour later the nurse comes to me and says, "I have bad news, we are going to move you to the PACU". She mentioned something about a mix up blah, blah, blah. Yet, the kicker wasn't that we'd be moved into another small space with no room and less privacy, but yep you guessed it we'd get el sicko back as a roommate. ARE YOU KIDDING ME?! We just got rid of him! Let me take a step back for a second...You all are so sweet in your encouragement to us reminding us that we are handling Payson's medical trials beautifully. Well, you should have seen the fit I threw last night then you might think differently. It was late, Payson just fell asleep, I wanted my PJ's and to hit the sack, but no no I had to wait another hour to get moved then settle us in just to go to bed. Not to mention the roommate has MERSA! I was furious and everyone heard it! It must have been hilarious to see me ranting and raving then try to be calm down enough not to make the nurses feel like it was their fault. Anger flowed through my veins like hot lava from a volcanic mountain side. Then the tears flowed, pouting and if I had the energy I would have kicked and screamed on the floor. I was so annoyed/angry that the little sleep I was going to have was cut short by a couple of hours. After we were moved, Todd left to get some sleep at home; I sat quietly in the dark for an hour before figuring out I could stew all I wanted but should at least work while I do it. After a couple of hours I could no longer deny sleep. I got the 80's coach/bed prepared all while wondering how many cheeks had sat where I'd lay my head. I pulled Payson's curtain which blocked the light from the hallway, but left me exposed to be viewed by every person who walked through our room. Once I finally fell asleep Payson and our roommate decided to have a battle of the beeps. Then for the rest of the night sleep eluded me with disturbances of nurses performing their work, Payson crying and finally doctors rounding at O dark thirty!

Once morning arrived or let me say once daylight was seen I was up and handling all the doctors and the plans.Shortly after Todd arrived the doctors decided cap Payson's trach. They put this plug like thing on the end of his trach and Payson immediately started crying and dropping his sats. They took it off and tried again a few minutes later only to have Payson do the same. Our hope of having a decanulation date in Feb. or March began to slowly slip from our fingers. It was then that the doctors decided to put a smaller trach in then view his airway. So, we changed out his trach and the doctors took a look at his airway. Within seconds she said the trach was up against a wall, but continued with this trial. So, we waited and watched with hopeful eyes. If you remember we had to have a custom trach made when the doctors realized that the end of the trach was being covered up by a pouch made of loose skin. So, we watched for every sign that it would work. After a little while we realized he was working a little harder to breath. Then we decided to put the cap back on him and he did the same hating every minute of it. So then we did the next best thing and put the passey muir which allows him to breath in through his trach, but forces him to breath out through his mouth. He hated the first try, but once he was playing on the floor we put it on him and he did beautifully!!! So, what does all this mean...that the only one who has the answers to our sons rarity's is God.

Until God decides to reveal all we do have a plan. For the next week, they are going to allow Payson to heal from surgery and not change a thing. Monday, we will begin to wean him off the vent at night 2 hours at a time. We will continue until he is completely off, but the goal is to be finished by Jan. 10 for our sleep study. Then on the 22nd we will have received a smaller custom trach that they will insert in clinic and try to cap then. The smaller trach should allow Payson more room to have a leak around his trach in order to breath properly. If all goes as hoped and we get to the sleep study and the results are normal we can move forward planning for decanulation. Although this might sound exciting, which it is, I am still very doubtful that all this can happen in that short amount of time. Again only God will reveal the real plan until then we keep walking through the open doors around us.

Thank you all for the kind words, encouragement and thoughts, but more than anything for praying for our miracle. We have found much comfort knowing Payson is prayed for by people all over the world! Thank you for walking through this journey with us and caring for the amazing little boy!

Surgery #5

I am sorry I have failed to give you an update on Payson, there are a million and one excuses as to why I haven't. So, the on the eve of a big surgery I am going to give a quick update:

Back in October when Payson was last in the OR, where all three of his new doctors were able to view his airway and esophagus at depth, we found out that Payson would have to have one more surgery before we were able to get rid of the trach. This information wasn't hard to hear, but brought Todd and I an ahha moment. When they scoped Paysons upper airway, (which had never been done) they realized that Payson had developed a form of scar tissue that blocked a majority of his airway. This skin was very difficult to see past, just a tiny opening, but beyond that they were very positive with his airway. As rare as Payson is they informed us he was on the less side of rare spectrum that they'd seen. Comforting...sort of! So, after tomorrow Payson's breathing should be so much easier. After tomorrow a lot more air will go around his trach allowing him to be louder and clearer allowing us to hear his real voice, (or so we hope). After tomorrow we are just a few steps away for having the trach removed for good. But in order to finish this chapter Payson has to endure another painful surgery. They will have to cut open his neck/revise his stoma, which means anyone who tries to get near his trach he will Kung Fu fight them. Needless to say we will be in the hospital for a couple days with a sedated boy. Yet, once we pass through recovery they will be able to begin to cap the trach essentially close it off without removing it. This will force him to breath normally and get him ready for the removal. If he gets sick and has a hard time we will have the trach as a back up. So, we move forward...

We are supposed to be at CHOP tomorrow at 8:30 meaning his surgery won't start until 9:30-10. Please pray that Payson's anxiety is minimal, the surgeon hands are just an extension of Gods, that recovery be easy and fast, we return home in just a few short days and that as parents we be the best advocate for Payson that he could have.

We will keep you posted!

Reality

After two years of living with a special needs child Todd and I have learned the in's and out's of Payson's care. We are so comfortable with his care that we have become complacent. We just do the same routine day after day maintaining the normal so that we can just sail right on through to the end of our "trach" period. (Which after our scope last month we should be capping, which means closing his trach forcing him to breath like normal, by the end of next month...after surgery). Yet, Payson had other plans and wanted us to revive some old unused skills last Tuesday night.

Todd and I had spent last weekend in NC with my family. It was just Todd and I sans the kiddos. It was a fabulous weekend, but that is another post. Because all last weekend was covered 24 hours a day we had to make up hours so last Tuesday night we decided to do the night shift. For us night shift is typically easy we have to get up to add more to his feed answer alarms and suction him, but it is normally 2/3 times a night you have to get up. Pretty easy that is until last Tuesday (12:30 Wed. morning)...Todd and I were both in the office downstairs chatting it up. He stopped mid-sentence and asked if I heard the alarms I said no and went on with our conversation. A few seconds later he stopped again and said his alarms are going off then ran off. Within seconds he was calmly calling me upstairs. Now, usually when Payson's feed has come undone and he finds it he calls me up to help him change sheets, but this time he had some urgency in his voice. When I arrived at Payson's bedside I saw a mother's worst nightmare. My miracle son was once again struggling to stay alive. He was blue, unresponsive and unable to breath. His eyes were rolled back into his head. It was his eyes that took me back...it was the same look of Payson being in there, but he wasn't there, it was the "help me, I am scared" eyes despite that he was looking past me. Tears filled up my eyes and we both jumped into gear. Todd had the bag out and was trying to take breaths for him; I was getting another trach ready for him while calling 911. We did a trach change still not response just dead weight when I tried to sit him up. I put him back down and we bagged again. Todd was calmly, steadily and urgently doing all he could think of to get Payson breathing. We sat him up again and patted his back firmly. Within seconds he threw up and finally he reassured us with his voice. I left Payson with Todd while I ran downstairs opened the door for the paramedics and woke Walker to call Sara. I run back upstairs and the paramedics are on the sidelines letting Todd do his thing. I jump in and suction him. The more stimulation we give Payson we are slowly getting a response. First his breathing was re-established, and then his color and lastly his eyes allowed his soul to shine through. Despite Payson being stabilized he still wasn't himself so we got him ready, (meanwhile cops and paramedics are just watching us do our thing asking if we both had medical training...911 is useless for a special needs child except for transportation.) By the time we got his vent, bags and him ready to head to the ER he was his scared feisty self. I knew he'd be okay when he fought me trying to put him in the seat on the ambulance telling me no and shaking his hand side to side. Todd knew he was okay and that he hadn't been deprived of O2 for too long when he heard the sirens on the ambulance and was in amazement. He was so enamored with this ride that he wanted Todd to take pictures/video. By the time we were at the hospital he was fine. A chest x-ray, EKG, evaluation and 5 long early am hours we were home. Despite the lack of sleep since it was 6 am he decided he was too energetic for sleep and began to play with his sister. Todd and I were emotionally and physically tired. Seeing your son that close to the danger zone and having to bring him back wipes you out. Unfortunately, we didn't have nursing until 9 am so we hung in until then.

As if this wasn't enough...less than 12 hours later Payson was outside laughing and running around like a wild man. Suddenly I hear him screaming. Todd walks in with the nurse and tells me to get ice. When I saw the huge knot and scrape in the middle of Payson's forehead I just looked at the nurse and said I can't do this, you need to take over. I just couldn't muster the energy to comfort him. It sounds mean I know but I was in self-preservation mode; the night before killed me on all kinds of levels.

Less than a week later and all is well. He is back to his spunky, fun self. He even went to church with us today for the first time in over a year. Mom and Dad are okay too. Needless to say one of us remains close to his room so we can be sure to hear his alarms, we also check on him and suction him a lot more and when we hear the alarms we no longer hesitate to see if it stops we go up. Teaches us for getting too comfortable!

I will post video/pictures of the boy soon. I will also blog about our North Carolina trip and give a summary of Payson's medical outlook after the scope! Whew I have a lot of catching up!

Perspective

The other day I had a nurse come in and tell me that Payson was the first baby she cared for that was developmentally normal. Sometimes I focus so much on the muck and mire that we are going through that I forget to look at the real picture!

Thank you Lord, that Payson is a typical two-year old with several accessories! Thank you that he can run, play, hit, fight, laugh, rough house, cry and tell me at each house trick or treating that they gave him CANDY! Thank you for the excitement his eyes reveal when he sees Elmo, his dad or just going outside. Thank you that our journey, though tiring, is only a blip on the radar screen and one day this will just be a memory! Thank you, Lord Jesus, Thank you!

The big reveal?!

As I lay here tonight my thoughts are on tomorrow. My nerves conflict with the excitement that dwells within. One part of me can't sleep excited like a girl going to the first day of school. Nervous that the doctor could delay or that we are left with more questions than answers. I so desperately want this procedure done. I want Payson's new doctors to be able to view the inner complications my sons body has to hold. I need these doctors to dabble with our reality and finally know our sons body. I want to know what lies ahead! Yet emotionally I hesitant because Payson is now aware and terrified of medial atmospheres and anyone he doesn't know in scrubs.

Who would I be kidding if I said that I am being purely selfless in my desire. Ha I want answers! I want to know when/if our life will ever return to our normal. Will they be able to tell us an end date or will they devastate us with a longer stint in this emotional taxing life we lead. I want to know when I might not ever have to worry about Payson getting sick which has become our baseline for him. I want to know is he safe to eat, what can he eat, what restrictions or give the green light. Will the g-tube be a life fixture even after all this therapy because he body can't handle large quality of foods? What is going on in the upper airway that is blocking his exhalation? What caused his vocal cord to be paralyzed? I need not go on as you can see I desperately want answers and we really need them.

I have to trust that it is all in Gods time not mine, but don't blame me for giving the old college try. I promise you that the doctor will have very valid points as to why we should proceed with the OR appointment! Poor man has no clue who he is about to meet tomorrow!

May Gods hand be on Payson tonight and tomorrow, (actually for the rest of his life but one step at a time right now) for His big reveal!