2/28

Today is the day. g tube here we come....

2/26

As my Aunt Nancy keeps reminding me 'we all have a lot to learn from this little guy.' I truly believe that. I am in awe at how happy Peyton is overall on a daily basis. With everything that he has been through, the tests, procedures, surgeries, hundreds of IV sticks, etc he continues to put a smile on his face. It continues to make my day. ENT/ORL came yesterday and scoped Peyton. They found that his left vocal cord is 'weak.' I inquired what they meant by 'weak' because to me that was positive, it wasn't cut, it was functioning just not to full capacity. They said they categorize the cord as moving or not moving. They saw small movements but they let me know that because he is so small it could just be vibrations that they were seeing. They told me that in 80-90% of the children they see this in post surgery their vocal cord strength returns...it just takes time. That could be weeks, months, or years. The positive is that it has only been two short weeks since surgery. They told me that there is a procedure that they sometimes do where they actually move the vocal cord that is not working closer the one that is so that the airway in fact closes. This has risks associated with the procedure. It narrows the airway which can cause respiratory and breathing issues which is what put us here in the first place. They definitely did not push this on me as an option. They then regrouped with Dr. Jennings and his team and presented me a plan. Seeing as it is not safe for Peyton to eat liquids of any consistency they need to insert a feeding tube. There are two options, an ng tube or a g tube. An ng tube goes in the nose down to the stomach. A g tube is surgically inserted through the belly and into the stomach. As a collective we all agreed that a g tube was in Peyton's best interest. I had always thought of a g tube as a long term feeding tube. They assured me that it can be as short term as we need, hopefully to get us over this hump. So, from here they will schedule time in the OR and insert a g tube. We will then need to be trained on this device and how to use it etc. All liquids and medicines will go through the tube. We are allowed to feed Peyton thickened baby food by spoon. Hopefully he will be able to retrain himself how to swallow without aspirating and this will just be a blip in the grand scheme of things. As for the answers to some of the many questions I had: no this will not delay his speech, no there is nothing that I can do to help him regain cord strength, yes he can bathe, yes he can swim, yes he can go to the beach, basically what I am saying is that he will be a normal baby and can do everything that Dylan can do besides drink a bottle. There are a few other tests that they need to run to rule out the VACTERL association (no they do not think that he has this but they need to check all of the boxes.)
We have scheduled the next ENT scope for one month from yesterday. Hopefully at that point he will have gained more strength in his left cord and we see them working! We have also scheduled a modified swallow study for that day to see if there has been any progress with him aspirating less. I am confident in our team here. My ultimate goal is to be Peyton's advocate on a daily basis and choose the correct course of action to get him to be able to lead a normal life as soon as possible. I truly believe that we are getting there. It may be some time before we get home to Wilmington but I am beginning to see the light at the end of the tunnel. I continue to thank you all for your support.

"You can do all things through Christ who gives you strength." I am not the most religious but this quote continues to give me the strength that I need on a daily basis.

2/25

It has now been forty days in a hospital. I never thought I would say that. That being said, I remain positive and Peyton remains in high spirits. The weekend was quiet. Our goal was to get Peyton to eat. Once they took him off of the Flagyl and switched him to the Venco we saw a change in Peyton. From what I hear the flagyl is pretty harsh and it made Peyton fussy as well as sick after eating. We had some small successes getting Peyton to eat. He was barely meeting what he needed to minimally consume on a days basis but we got the team to agree to wait until Monday to discuss the ng tube because after having three different IV nurses attempt to get an IV in we were successful. While getting the IV in they drew blood to do a CBC which came back normal.
Yesterday they did a modified swallow study. During this study we found out that Peyton is in fact aspirating on liquid, both honey and nectar consistencies, as well as purees. They put Peyton on NPO (no oral feeds) until the team regroups to discuss a plan. They have scheduled for ORL to come today at some point and scope his vocal cords. Hopefully the reason to his aspirating is swelling of the vocal cords that will in fact subside over time and they will shut. Worst case scenario (which Jenning's nurse Dori finds hard to believe) is that his vocal cords were cut during surgery. Seeing that he recovered so well post surgery and does make some sound now we are hopeful that is not the case. Once I get the results from ORL I will let you know. Until that time I pray that this is just another small bump in the road of Peyton's recovery that can be easily solved.

2/21

Peyton and Dylan turned 9 months old today. Peyton has spent both his 8 and 9 month birthdays in a hospital setting. Last night Peyton's oxygen saturation levels dropped  and he started to sound a little 'junky' so they ordered an x-ray in the middle of the night. They saw fluid in his right lobe which most likely means he has been aspirating when eating. They ordered a CBC (complete blood count) which is a blood test to make sure that he does not have pneumonia. He lost his IV today...we knew that the day was coming. I think this has been his longest stretch with the same IV in to date. They IV nurse tried to put a new one in without any success. They then called in the head IV nurse and she tried as well...without success:( Poor guy has no good veins left. This most likely means that they will put a feeding tube in through his nose to deliver fluid and nutrients. He took in a few feeds but not nearly where he needs to be. The doctors aren't overly concerned at this point. They think that there could be a few reasons for Peyton not wanting to eat: being taken off of the methadone, GI upset, the C diff, or the antibiotic for C diff. They switched out the antibiotic to the other one that treats the virus and he seems to be tolerating it much better.  The feeding team stopped by and we have thickened his feeds even more hoping it will help to stop any aspiration that may be taking place. I am hopeful that tomorrow he will miraculously want to drink like he used to. Thank you all for the continued thoughts and prayers. xo

2/19

Today marks 34 consecutive days in a hospital. It has been a long journey thus far but I am positive that we are making great headway despite the speed bumps that we have hit along the way. I am just beginning to feel like myself again recovering from whatever I had, norovirus, C Diff, etc. It was a rough few days. Peyton's stool results came back and he tested positive for C Diff a Gram-positive spore-forming bacteria that grows in the gut that is best known for causing antibiotic-associated diarrhea. Symptoms include watery diarrhea, severe abdominal pain, loss of appetite, low grade fever, blood in stool, and weight loss. We are treating this with flagyl, an antibiotic. It can take about 48 hours to start to kick in. Despite contracting this virus, Peyton's spirits are high and has a happy disposition. He still hasn't wanted to eat much. He has taken some jar food but wants nothing to do with a bottle. When he does eat formula he throws up soon after. They are sending some more of his stool down to test for rotavirus, which causes severe acute gastroenteritis with diarrhea and vomiting. There is no treatment for rotavirus other than keeping hydrated. The team has begun to throw around the idea of putting in a feeding tube if Peyton does not start taking fluids orally in the next day or so. I am hoping that tomorrow brings a new day, one that makes Peyton extremely thirsty!
 

2/17

Friday's Endoscopy and Bronchoscopy went well. Dr. Jennings was happy with what he saw. He said his airway is not perfect but he thinks that after some close observation we may be able to get by without doing the aortopexy surgery. They are keeping us in the hospital to slowly wean Peyton from his drugs and closely monitor his breathing and eating. We need to come back in 4-6 weeks for another Endoscopy and Bronchoscopy. Since then I caught a GI bug that has been going around and have been down for the count since Friday night. Chris stayed at the hospital with Peyton with my father and brother coming in to relieve him. My brother and Chris now also have the same GI bug. Peyton has not been wanting to eat which is very unlike him. He has had a low grade temperature, is whiny, and has been having loose stool. They sent a sample of his stool down for testing. The team thinks that he also has the GI bug and put another IV in to make sure that he is staying hydrated. I am back at the hospital with him now. Other than that there is not much new to report.

2/14

Happy Valentines Day! Yesterday was a better day. My mom and Dylan came in to visit which was so much fun. Dylan was a wild woman and loved playing in Peyton's crib. They were so excited to see each other! Peyton did much better with his feeds. He took down about 4 oz every few hours. There were times after he ate that he sounded really junky and couldn't seem to cough up the mucus and secretions that are stuck in his lungs. He would vomit here and there but seemed to keep a good amount of food down. At points we had to use a suction to stick down up his nose and down the nasal passage to help get him to cough. It was not very pleasant. Peyton was pretty happy yesterday and smiled a lot which was very refreshing. Physical Therapy came by to assess his development and do some chest PT. They were pleased with what they saw. Along with some vomiting after feeds Peyton had a lot of diarrhea, poor baby. Because of this he is now on precautions which means anyone who comes into our room needs to be gloved and gowned, he can't go tot the playroom or common areas, etc. I am waiting for him to have a bowel movement so we can collect some and send it down to the lab to see if he has an infection or virus that may be causing this. It may take up to two days for results. We also stopped his feeds late afternoon to give his belly a break and put him back on IV fluids until after the endoscopy and bronchoscopy today. Let's hope that Dr. Jennings does not think that he needs an aortopexy to fix the front of his trachea. I will updated once we hear more.

 P and D visit

 My Valentine

2/13

Today is a new day. I say that because I found myself frustrated and scared many times throughout the day yesterday. Peyton still had a hangover from the cocktail of drugs that had been heavily pumped through his system over the weekend/week. He was not himself...distant, out of it, bug eyed, scared, unemotional, tremors. Dr. Jennings stopped by first thing to check in on us and by the tremors that Peyton was having he thought that he need a benzo (like Ativan) in order to mellow him out. He gave direction to feed him as much as he tolerated it and work on chest PT in order to help teach him how to cough again. Soon after the pain team rounded and were weary about introducing a benzo and thought that we should try small doses of the drugs he was on in the ICU to see if that would help stabilize his tremors. I worked with the feeding team and Peyton took 15 cc's of thickened Pedialyte. They said I could try again in a couple of hours. I tried to put Peyton down for a nap and as quickly as he fell asleep I watched him wake himself by violently thrashing around his crib. I called the nurse in because his pupils were very dilated, he had large bug eyes with a scared look to them, and was throwing himself around the crib. The head nurse came in and said that his proprioception was off due to the drug withdrawals. We tightly swaddled him and put barriers on either side of his body so that he could feel safe in his bed and put calming music on. He quickly calmed down and his pupils began to go back to 'normal.' We called the pain team down to assess and they agreed at this point that introducing a small amount of Ativan would be in our best interest. Once we did that the tremors dissipated and his pupils came back to normal. I tried feeding him a few times after this and he would throw everything right up. We agreed that it was best to put another IV in since he lost the one that was put in his foot before we left the ICU in order to administer some fluids. He let them put the IV in without a cry. After a while he started to show signs of his normal self. He grabbed for his blankie, he sucked his thumb here and there, and he sat up curiously looking around. Chris came to take over and stay the night. They had an uneventful evening and both got some sleep. I woke up to a text from Chris with a picture of Peyton smiling! He also told me that he had started eating and keeping the food down. This news made my day. We are working on teaching Peyton to cough and doing chest PT. We have a Endoscopy and Bronchoscopy scheduled for tomorrow afternoon to assess the esophagus and the front of his airway. Depending on what Dr. Jennings sees tomorrow will tell us if we have to have an aortopexy at the end of the month or if the thoracotomy was enough to fix his ever so complicated airway. Once again, thank you for your support and prayers.

 Peyton post proprioception scare

 

2/12

We are back up on the tenth floor which is the surgical floor. They moved us off of the ICU unit around 3:30 yesterday. Peyton's vitals and numbers were all great. He was not swallowing his saliva and he was constantly drooling and coughing up secretions. I found myself suctioning out his mouth often so he wouldn't choke on his saliva. The team reassured me that this was not out of the ordinary seeing that he had just had been extubated. They told me that it took some patients a couple of days to start swallowing again on their own. He also was not peeing so they used a foley catheter a couple of times to help empty his bladder. We had a couple of chest x-rays done and his lungs and chest looked good. They put a water seal on his chest tube to see if they would be able to remove it which we did later yesterday afternoon. He was receiving chest PT every few hours as well as a nebulizer. His two IV's in his left hand and arm got infiltrated so we had to stop those and remove them. His arm got red, extremely swollen, and firm to the touch. Those were his last two IV sites and since he was not swallowing on his own the IV team came to assess the placement of a new site. Unfortunately we were running out of real estate seeing as his right arm had the arterial line and his legs and feet looked like little pin cushions with all of the bruises. They tried one foot and couldn't thread the IV so they lost that. Peyton was so out of it/drugged that he really didn't even flinch. They fortunately found a very small vein in his left foot that they could use and were successful in placing the IV. They removed the arterial line and from there brought us up to the tenth floor. The pain team had stopped by because I had noticed that he was having little tremors in his hands/arms. After assessment they were unsure if he was having withdrawals from the drugs or if there was something else going on. We decided that it was best to remove the chest tube so that we could remove the paravertebral catheter to see if that would help relieve the shakiness. They started him on a small dose of methamphetamine and toradol for pain/withdrawal. It would take a bit to see if this would help.
Chris came to relieve me and stay the night with Peyton. I came back first thing this morning. They seemed to have a pretty good/uneventful evening. From my observations this morning Peyton's swallowing function has gotten a little better. It seems as though he is definitely swallowing some of his saliva. He has started grabbing on to things and sucking on his pacifier. He still has some tremors and it is something that I will address with the pain team when they round. He seems to be in some pain so I want to make sure that he shouldn't be receiving anything else to lessen the discomfort. He has started peeing on his own which is a step in the right direction. We will continue with the chest PT and nebulizer treatments. Dr. Jennings and his team round at 10:00 and I want to ask about when we are going to start trying to feed Peyton. I will update as anything changes.

2/11

Peyton did very well post extubation. They kept him comfortable through the paravertebral catheter. They have been giving him fats and nutrients via IV. They removed his catheter and he had a couple of good wet diapers. He has not needed oxygen. His oxygen saturation levels have been perfect and his heart rate, blood pressure, and respiratory rate numbers have been looking great. He has been receiving periodic racemic epi treatments for breathing. They have given him suppository Tylenol for pain control. He has been enjoying the chest PT which consists of the nurse gently pounding on his chest with a cup. He did really well throughout the night. They have been suctioning secretions from his mouth as necessary. He has been giving some good coughs which is what he needs to be doing. He has had trouble swallowing and lets the secretions/saliva build up in his mouth and then coughs it out. I spoke with the rounding team as well as Dr. Jennings and considering what he has been through and having multiple tubes down his throat they are not concerned. We have stopped both IV's in his left arm as his arm has gotten pretty puffy and firm. The IV team will be coming up to put in a new IV so that he can continue to receive nutrients until he can eat (which will be when he starts to swallow.) They are looking to hopefully remove his chest tube later this morning. If all goes well over the next few hours they will most likely move us off of the ICU unit and back to the tenth floor which is the surgical floor. Thank you all for the continued support, it really is helping Chris and I power through this process. xo Ryan

2/10 Part II

Not much to report right now. We are still waiting for Peyton to wake up a little more than he is. He had been continuously receiving bolus's of the morphine and other meds to keep him calm and I think that has all finally caught up with him. We are hoping that it won't be much longer until we are at the point where we can pull the tubes. I will report back once I know more.

2/10

Good morning from the ICU! Today is a big day. That being said, we had an uneventful weekend. They have been keeping Peyton comfortable and sedated with a cocktail of morphine, midazolam, and dexmedetomidine. He still has the paravertebral catheter in as well for pain.  The respiratory team has been administering racemic epi treatments intravenously to help with his breathing. They have also been working with him because his right upper lobe is collapsed. After x-rays this morning it is looking better. The x-rays also showed that the secretions in his lungs are almost all dried up which is a positive because once off the ventilator he would be on his own to clear them. Up to this point he has been on a ventilator. Later this morning they will start weaning him off of the meds so that he wakes up and has to start breathing over the ventilator. They will pressure test his breathing to make sure that he is able to do it all on his own. I don't think that it will take long for them to extubate him from there. I will update once he is extubated to let you know how the process went. Prayers that it is uneventful and goes smoothly.

2/8

I apologize that it took me some time to report back. Yesterday was a long day for us. After we took Peyton down around 6:30 they took him back to get his IV's in place, etc. He ended up having multiple IV's and two arterial lines. Peyton was in surgery for about nine hours and they informed us that it was a very efficient surgery. We sat down with Dr. Jennings around 4:30 to go over what was accomplished. They bronched him first to look at his airway. From there they made their incision using his scar from the TE Fistula surgery. Dr. Jennings and team removed some scar tissue. They were surprised at the amount of secretion in his lungs which they were able to clear a lot of. They began by repairing part of the TE Fistula surgery. They then removed a suture that was left over from the TE Fistula and replaced it with a much smaller one because it was impeding on the airway. After that they removed a pouch that had formed in his trachea that if intubated and not knowing it was there could be quite problematic. They then went on to attach the posterior part of the trachea to his spinal column in order to open his airway. Peyton was given a blood transfusion during the surgery due to the blood loss which they informed us is normal and they were prepared for. After they closed Peyton up they inserted a paravertebral catheter which administers a bolus of local anesthetic to help with pain. Peyton was then brought up to the ICU where we were able to go and see him. He has a breathing tube and another tube in to remove the leftover secretions in his lungs. After completing an x-ray they have decided to keep him intubated until tomorrow because once they remove the tubes he is on his own. They feel that it is in Peyton's best interest to keep them in to remove as much fluid as possible. He has been pretty feisty this morning with moving around so on top of the morphine and other pain drugs being administered they have started him on dexmedetomidine in order to help keep him still. They are hoping to extubate him tomorrow. I will keep you posted as we know more.

2/7

Chris and I brought Peyton down to pre-op around 6:30am. There we met with Peyton's team of doctors and nurses and went over the plan again. Peyton was all smiles and flirting with the nurses, go figure! They took him back around 7:30 to get underway. I just got our first update from the nurse. Anesthesia got all of the lines put in and have completed Dr. Jennings and team have completed the bronchoscopy. They are now about 20 minutes into the Thoractomy (they will not be doing the aortopexy today.) I will update as I hear more. I cannot thank you all enough once again for your thoughts, positivity, and prayers throughout this whole process. It has meant the world to Chris and I.

2/6 Part II

Here we go. I met with the EA (esophageal atresia) team late this afternoon during their rounds to talk through tomorrow. Dr. Jennings watched his bronchoscopy video with me to show me what his plan is for fixing Peyton's ever so narrow airway...poor guy. I have no doubt that we are in the right place and in the right hands. Dr. Jennings will be coming to take Peyton tomorrow morning around 6:45 but probably will not make the first incision until about 9. He is first case. They will give him some gas to put make him comfortable to start. His IV came out today so they will put an IV in (from what anesthesia tells me there will be numerous IV's for precautionary measures.) They will most likely put in a central line as well. They will begin by doing a bronchoscopy so Dr. Jennings can see exactly what he is working with for himself. From there his plan is to go in from the back using the TE Fistula scars. He will basically build and reinforce the posterior side of Peyton's trachea. There is a pouch that sits above a stitch from the TE Fistula surgery that he is going to remove. I asked how long I should be prepared for him to be in surgery and Dr. Jennings looked at me and said 'until I am done.' Anesthesia told me the surgery can take anywhere from 4-11 hours depending. They will update us as they progress. I will try and keep everyone up to date as best I can. Tomorrow is going to be a long day. I cannot thank you enough for your positive energy, thoughts, prayers, and kind words. P man has a lot of people pulling for him tomorrow and he also has some amazing guardian angels that I know will be ever so present. We send our love to you all.

 Early morning sunrise with Dad

 Playing in my crib

 All smiles after bath

Goodnight all! xo

2/6

Yesterday wasn't too busy. We had one major test, the CAT scan. They put an IV in and we headed down to Radiology. Dr. Jennings was present for the dynamic CAT so he could make sure that he got the images that he needed for surgery. The whole process only took about an hour and then we got to go see him in recovery. He came out of anesthesia beautifully. We came back upstairs and he was able to take some stroller rides and play in the play room. We got results back from the spinal x-ray and they saw no abnormalities. The echo came back with no comments as well. Apparently TE Fistula babies can sometimes have what is called Vacterl syndrome which is why they have been very thorough in doing the tests and x-rays. The good news is that everything seems to be coming back with no abnormalities. We are still on schedule for the aortopexy surgery tomorrow along with the bronchoscopy. We will have a meeting with Dr. Jennings and team today to iron out all of the details and get a better understanding of what it all entails. Phlebotomy has already come today to draw blood in preparation for tomorrow. Other than our meeting with Jennings and team I don't suspect we will be doing much more today. Once I find out more information I will keep you all up to date. Thank you for checking in!

2/4

Chris stayed the night with Peyton at the hospital last night so I could get some sleep. Sweet man. I came in this morning to relieve Chris and spend the day with Mr. Peyton. Miss Dylan has been lucky enough to spend her days with Molly (thank you Molly for all of your help!) I didn't think that we had much scheduled and that it would be a slow day but I was wrong. We packed a lot in today! We went down to Radiology earlier this morning and had x-rays of his spine done. From there we came upstairs and had a meeting with Dr. Gno, the Pediatric GI doctor to talk about his role this week and moving forward. From there we had a team come in to do an Echo (ultrasound of the heart.) Peyton was given a dose of Ativan prior to the echo because they need him to stay pretty still in order to get good images. Along with the Ativan and echo we gave him some chocolate pudding to keep his attention and try to keep him calm and he loved it! After every bite we got a huge smile. Happy boy. We haven't received results of any of today's tests yet. We did find out that Peyton's viral test from yesterday came back negative so he is off of precautions. Playroom here we come! We have really taken advantage of the stroller that Children's provided us. We have walked countless laps around the floor and we explored some of the other areas of the hospital as well. Peyton has been extremely happy and content today which makes my day so much more pleasant. Tomorrow we have the CAT scan scheduled for 1:00 which means he will be NPO (nothing to eat orally) starting around 4am. Eek. As of now we are still on schedule to have the bronchoscopy and aortopexy for Friday but this still subject to change. Thank you all for your positive thoughts, prayers, and support. It has been much appreciated and helps to lift us all up during this time. xoxo

 Pudding face

 Deep thoughts by Mr. Peyton

 Love my walks!

Fun times with Molly and Anna

2/3

We were admitted to Children's Hospital today at noon. Within a few hours of being there we had a chest X-ray, viral test, swallow study, and met with Dr. Jennings. When we first met Dr. Jennings he said 'Peyton is cute, but he has a bad airway.' It didn't take long for Chris and I to feel very comfortable with Dr. Jennings. He took time to talk through his process, show us results of the tests we did today and assure us that this is fixable and he does it day in and day out. As of now we have CT scan, and bronchoscope scheduled for this week. The aortopexy surgery is scheduled for Friday if all goes as planned. Dr. Jennings is working on a plan of attack for Peyton's surgery and would only move it if he feels rushed which is reassuring. This by no means is a minor procedure but Chris and I have full confidence in Dr. Jennings and his staff. I will update as we find out more. Until then, I am going to do some work and try to get some rest.

2/2

Twelve hours, nine states, eight feeds, four gas stops, four diaper changes, and three potty breaks for  Brady and Cooper later...success! After reviewing all of the paperwork, picking up Peyton's prescriptions, and organizing the car we had UNC in our rearview mirror. We left around 1:15 pm and arrived in Winchester, MA around 1:15 am. We powered through the drive and the kids did fantastic. It was extremely helpful that we traveled a good amount through the night because they slept for the most part. We are getting admitted to Boston Children's tomorrow to start the next leg of our journey.Until then we are going to enjoy our freedom, some fresh air, and the Superbowl!

 Leaving UNC

Thank goodness for naps...

Enjoying time together for the first time in 15 days