7/25

We were discharged from BCH Sunday! We survived keeping Peyton flat for 48 hours:) He has been tolerating the surgery very well. He has been doing great at home. We are scheduled for his laryngeal cleft surgery for October 13. We have asked to be put on a cancellation list and hopefully we will get our surgery date moved up significantly.

7/18

Sorry I am a little delayed with my post. Peyton did very well in surgery. He had his scope where they found him to have a swollen grade 1 laryngeal cleft. We are having a modified barium swallow study redone at BCH Monday. From there we may or may not surgically repair the cleft.
The tethered cord surgery went well as well. Dr. Robinson said when she went to release the cord it did recoil a fair amount so she believes that there was some tethering. We met Peyton back in the PACU around 10:30am. He woke up irritable and fussy so we began giving him doses of morphine. They did not seem to help. He continued to get more and more agitated. We then tried valium. It had an adverse effect. He was flailing and screaming crying at the top of his lungs. We tried benadryl, ativan. tylenol...etc. Anesthesia came by to assess, neuro, pain, anesthesia again...nobody could figure out what was going on. We decided to stop the morphine and narcotics and replace with tylenol/motrin every three hours. As the morphine seemed to leave his system we got a much less irritable baby boy. The poor thing cried for ten hours straight. I felt awful. All the while he has to lay completely flat for 48 hours! How do you tell a 13 month old that they have to stay completely flat for two days?! Needless to say he has been doing remarkable. I am in total awe of this little guys strength, tenacity,and spirit. He faces adversity better than any other human I know. As I have said before...I have a lot to learn from this precious soul. xo

7/16

The Adventures of Peyton continue. We made it up to Boston on Saturday evening. We had our pre-op appointment Monday morning for Thursday's tethered cord surgery. Yesterday we met with Dr. Rahbar who is Associate Director of the Otolaryngology Department. We met with him because a few weeks back we took Peyton to UNC Chapel Hill for a modified barium swallow study and he failed. It showed that he was tracely aspirating on all consistencies. Dr. Rahbar took a camera through Peyton's nasal passage to look at his vocal chords. Good news! His vocal chords were working fine. Bad news...we don't know why he is aspirating. Dr. Rahbar was kind enough to make himself available to scope Peyton before Dr. Robinson does the tethered spine surgery. This will allow Dr. Rahbar to see if Peyton has a laryngeal cleft that could be causing the aspirations. Hopefully we get an answer. After Dr. Rahbar scopes Peyton then Dr. Robinson will begin on the tethered spine surgery. They will go in through Peyton's lower back and remove the fatty phylum from the tip of Peyton's spine. Then she will snip the ligament at the tip of the spine to release any pressure. We are doing this surgery as a precaution. They cannot tell us if Peyton will ever develop tethered spine or not. If he were and we didn't catch it early enough on then he can lose lower body functions like voiding (both urine and fecal matter), walking, running, etc. That terrifies me. Therefore the neurologist, Chris, and I all agree that it is in Peyton's best interest to go ahead with this surgery. They say the surgery should only last a few hours. From surgery he will be going to the ICU and then once stable they will move him to the neurology floor. I will keep you posted on his recovery.
I greatly appreciate your thoughts and prayers at this point. I have found that while living in the hospital for four months I became desensitized to the anesthesia, surgery, needles, and everything else that becomes your 'normal.' Then we got to go home for about two months. Home was a nice reminder of what most peoples 'normal' is and I really enjoyed it. I am not ready to go back but I keep reminding myself that this is what is best for Peyton. We are at the best children's hospital in the nation. The doctors and nurses know him inside and out. It  just isn't making it much easier this time around.
Surgery is scheduled for 7:30 am. We will arrive at the hospital around 6:00 am. Thank you all for your texts, calls, and messages. You have no idea how much they are helping to lift me up.
"I can handle all things through Christ who gives me strength."
Stay tuned...

5/14

The day has come! I am overjoyed to let you all know that we have finally made it back home to Wilmington! It was a long twelve hour drive going through ten states but we made it. We will continue to go back to BCH for Peyton's care but it is so nice to have some normalcy. We head back for the tethered spine surgery mid July but until then we hope to be hospital free! Thank you all for your continued support and prayers. They are what has helped push Chris and I through this wild ride. xoxo Peace

5/1

This post comes a few days late but it is good news! We got moved back up to the tenth floor late Saturday (4/26) afternoon. While in the ICU we had a lot of road bumps. Peyton does nothing easily and I (and now the nurses) know to expect the unexpected with Peyton. They pulled the chest tube which went smoothly. We experienced some pretty intense drug withdrawals over the past few days and are working closely with the Pain team to keep Peyton safe and comfortable by administering Ativan and Methadone. He also began to be very fussy and inconsolable lately with this new cry/scream. They had us go down for a stomach x-ray Tuesday to see if there was anything blocking or clogging that would cause pain and discomfort and that came back normal. We gave him an enema to see if it would help move anything. A few hours later we had the same screaming cry and we gave him a stronger enema. With that came out a little blood and a jelly like substance. They sent us down for an ultrasound to rule out intussusception (when one portion of the bowel slides into the next, much like the pieces of a telescope. When this occurs, it can create a blockage in the bowel, with the walls of the intestines pressing against one another. This, in turn leads to swelling, inflammation, and decreased blood flow to the part of the intestines involved.) The ultrasound came back fine but we then were told that this can happen intermittently. The next morning over rounds the EA team got to experience this new cry. They decided it was time to take out the GJ tube and switch back to the G tube. They think that the J tube was causing him to experience intussusception. Once we switched back I saw results pretty immediately. Peyton did really well tolerating continuous G feeds so we have now started him on bolus feeds which he is also doing amazing with. I find him taking more and more by mouth which is exciting! We will get another modified swallow study done before discharge to see if there has been any progress with his swallowing function. Many have asked when we will be going home. I have learned not to put a date on our departure but we are hoping in the next couple of weeks. We cannot get discharged while he is on the Ativan so that is really what is holding us here along with getting his feeds in order. Other than that in the words of Dr. Jennings "Feed him and street him." xo Peace

4/23

Since my last post we have made some great progress. Peyton was taken down to IR on Saturday. They looked at his vein anatomy and to try and figure out why they were having so many issues with the PICC line coiling and going into his IJ. They found that his central vein is occluded. They pulled the PICC back so that it acts as a peripheral which is fine but seeing as it isn't centrally located they can't use it to administer PN which they wouldn't use it for anyway. While in IR they also switched out his g tube to a gj tube to air on the side of caution. His incision started looking a little infected. They pulled the derma bond off and did an ultrasound to see if there was fluid below the incision. They were able to clean it out and put some dry gauze over to keep clean. They weren't overly concerned, it was something that they would keep a close eye on. After a couple of days they put him on IV vanco in case there was a little infection brewing. He was heavily sedated throughout the weekend even seeing that they took him off the paralytic. They started him up on his feeds which has been going well. He was not pooping on his own so they gave him a suppository. That was unsuccessful so they then gave him an enema which did the trick. His chest x-rays started to show good progress over the weekend. His left lung that was collapsed began to fill up and the right was making progress as well. By Monday his swelling started to really go down and he started looking more and more like himself. They extubated Peyton yesterday and it went pretty smoothly. He has a nasal cannula but he is basically breathing on his own right now. His voice is very weak but not concerning seeing that he had the tube in place for seven days. Post extubation he had an allergic reaction and broke out in welts and his skin was red and blotchy. They think that it may have been a reaction to the IV vanco. He was given a little Benadryl and they started running the vanco at a slower rate. Peyton does nothing easily....but he has been fine since. They pulled the foley catheter and he has been voiding on his own. We are still waiting for him to poop again and may need to administer another enema. Time will tell. They put the chest tube to water seal and I am hopeful that they will pull that today which will make him a little more comfortable. All in all we have made great progress and Peyton is doing well! We will most likely spend another night in the ICU and then will hopefully move back up to the tenth floor. They will slowly start to wean him off of his meds and watch for withdrawals. Hopefully we won't have to experience that again. Thank you for the prayers and support through this emotional time. xo

4/18

For the most part yesterday was pretty uneventful. Seeing that Peyton is on a paralytic we have just been monitoring his blood gasses, lung x-rays, and fluid output. He broke his fever which means the antibiotics are fighting the klebsiella along with the strep pneumonia. We have been administering Lasix to try and help him move some fluid that he is holding on to. He is extremely edemous/swollen which is not overly concerning at this point seeing the amount of fluid he was given during surgery. Mid-day he lost all access. Both of his peripherals became infiltrated and his Picc line was in his neck so we could not use it. We put an emergency page in for the Picc nurse to come and try and pull back the line one more time. Fortunately she pulled the line back, we took an x-ray and it showed that we would be able to administer his meds through the line. It is still not centrally located so we have talked about trying to place a central line if necessary. We have had him on a continuous small volume feed through his g-tube which he has seemed to tolerate. The fear is reflux and aspiration so there was talk of putting in a gj tube when sent to IR to assess his vein anatomy/access and replace the Picc. We are working with the team to see if this is necessary or just a precautionary measure. His blood gasses have continued to improve and his chest x-ray showed a small improvement in his left lung. His swelling looked a little better this morning but he is still very puffy. They put the foley catheter back in to try and help him void some fluid while under the paralytic. We have also put an order in for some bedside PT to help try and mobilize some fluid retention. They are going to try and take him off of the paralytic today to see how he reacts. Other than that everything is pretty much status quo. I know this may sound redundant but we continue to be overwhelmed by the outpouring of thoughts and prayers sent Peyton's way. We are overly grateful to everyone as this is the time where we need the extra help. Peace. xo

4/17

Yesterday continued to be a busy day bedside. Peyton, being the feisty little guy that he is, continued to move around here and there even on the morphine which is not ideal when being intubated. When he would get agitated his oxygen saturation levels would continue to drop. During his last stay in the ICU post tracheopexy the same sort of thing happened. Every time Peyton would start to move he would get bolus doses of morphine and dex to keep him comfortable and still. The issue that we found was that some of this was stored in his fat and when we were ready to extubate Peyton was not responsive enough to do so. Then we had the issue of withdrawals from the pain meds. The team decided that it was best if we put him on a muscle relaxer along with the morphine that will in turn paralyze him so that he can take time to rest and heal. His heart rate was a little high hovering around 170 when it should be around 130-140. He also spiked a temperature even through the Tylenol that we were administering. We tried to draw blood through both of his peripheral lines and were unsuccessful. We were still waiting on the picc line. The IV team came bedside and a picc was placed around 5:00 pm. Once placed they found a coil in the line so they did a high pressure flush that seemed to straighten it out. Blood was drawn from the picc and sent to the lab for cultures and blood gas readings. His blood gasses have not been great but slowly have been moving in the right direction. They have been playing with the breathing tube settings to manipulate the gasses in his blood. Unfortunately the picc line coiled again so they pulled it out from its central location (it wont be able to be used for PN) and saved it so that we can at least draw blood from it. One of the cultures came back showing a new bacteria so we have switched his antibiotic to cover the staph and this bacteria. Kelly our nurse also put a cooling blanket under Peyton which helped lower his fever and his heart rate immediately dropped. His Foley catheter was removed last night and they gave him a diuretic and he has had some good output on his own. He is pretty swollen which they are not overly concerned with seeing as they gave him a bunch of fluid during surgery. Hopefully he will be able to move more fluids today which will help with swelling. They have reduced the settings on his breathing tube and he hasn't desated which is a good sign. They are going to try and give him small boluses of nutrition through the g-tube and see how he does with that. I hope for an uneventful day and that Peyton continues to remain stable on lower oxygen levels which will be great progress. Thank you all for your continued prayers, support, and messages....this is the time we need them the most. Peace xo.

4/16

We came to the ICU last night after surgery. When we got to Peyton's room they had him comfortable and on an oxygen mask helping him to breath. They had called for an x-ray of his chest bedside. When getting him situated for the x-ray and moving him around he got agitated, started to cry, and held his breath. His oxygen saturation level dropped to around 12 (it is supposed to be at 100.) They used a bag to manually make him start breathing again. They continued with the x-ray which showed his left lung is collapsed. They decided to put him on a cpap machine (continuous positive airway pressure) to help him breathe. He was still agitated so the respiratory team chose to change it to a bpap (bilevel positive airway pressure). He seemed to settle in and become more comfortable with the breathing help as well as the increased morphine. The good part of all of this is that it warranted Peyton to get his own nurse. At this point he also lost his arterial line which monitors his oxygen saturation level, blood pressure, and they can draw blood from. He has two peripherals so they were not overly concerned. At this point there wasn't much that Chris or I could do so we decided to head home to try and get some rest. We called multiple times to check in. On the 3am call the nurse told us that Peyton became agitated again and his oxygen saturation levels dropped. They were watching him closely and there was nothing that we could do so we told her we would be in first thing in the morning. When we got here this morning he seemed comfortable. They tried to remove the bpap machine to see how he would do breathing on his own for a short time. Immediately his oxygen saturation levels dropped to 10 again. They used the oxygen bag to get his levels back up. As a team they decided that it was in Peyton's best interest to re-intubate him so that he would be able to rest and heal. They intubated him bedside. After intubating him they tried to put another arterial line in which was a failed attempt. They have called to get a picc line placed so that they can have access. That wont happen until later this afternoon. The good news is that Peyton is stable and comfortable. He is able to rest and start to heal internally. I will continue to update if there are changes but it sounds like this will be status quo for the next few days. I keep reminding myself "I can do all things through Christ who gives me strength." -Philippians 4:13

4/15 Part II

Ten hours later Peyton's aortopexy surgery is done. We just got finished meeting with Rusty. It took him four tries to get the shape of Peyton's trachea to a place that was acceptable to him. They extubated him post surgery and conducted an echo which was all positive. They have sent Peyton up to ICU where Chris and I are eagerly waiting to get back to see him. Rusty is hopeful that we will only have to be in the ICU overnight and then sent back to the tenth floor. I know this is redundant but thank you all for the continued support, well wishes, and prayers. It was a long day so the messages were much appreciated. Peace.

4/15 Part II

We are seven hours in. The latest update that we received was that they closed his sternum but left the incision open and did a bronchoscopy. Rusty wasn't 100% pleased with the result so they went back in. When finished they will bronch him again to assess the results. If happy, they will close him up and do an echo. From there we will head directly to ICU. I will update when I know more. Positive energy.

4/15

Today is the day. We were taken down to pre-op holding around 6:30 this morning. We met with anesthesia, the OR team, and of course our favorite, Dr. Jennings. I was holding my breath that today would happen because one of Peyton's cultures came back yesterday showing that he had developed staph pneumonia. The good news is that we had started him on antibiotics last week after his bronchoscope. The hard part of it is that these respiratory issues will continue to happen until we fix his airway so it's a catch twenty-two. We just got an update that they had completed today's bronchoscope and that they had draped him in preparation for the aortopexy. They will begin by making in incision and going through his chest bone. From there they will assess the situation and devise a plan on whether they will bring the major blood vessels forward with the trachea or push them to the side. We don't know how long this surgery will take. As Rusty said, it will be over when he is done; that can take 4 hours or it can take all day. Chris and I have hunkered down by the window and are working while continuing to stay positive. Only good thoughts today. I will update once surgery has commenced. In Rusty's words 'Peace.'

4/10

It has been nine days since my last post. In those nine days Peyton has been admitted to BCH twice for respiratory issues. Most recently we came in on Tuesday for a pre-op appointment for his bronchoscopy that was scheduled for Wednesday. He has been fighting a little cold that has made his cough sound pretty bad. When we came in for the pre-op appointment the nurse hooked him up to the pulse ox machine and his oxygen saturation was hovering around 92. Immediately we were swarmed with nurses and he was put on an oxygen machine. We were told that we were going to be admitted. They took us to the ER where they did a full exam before they would send us to the tenth floor. I sent Dori, Dr. Jenning's nurse a text letting her know, and within minutes her and Dr. Jennings were bedside in the ER. The service they provide us is above and beyond. We were in the ER from around 9:30-4:00 when we were told they had a room for us in 10 East. I noticed going from one department to another that Peyton is frequently said hi to by name by nurses and doctors around the halls of the hospital....we are getting to be regulars. Once up in 10 East we were told that anesthesia wanted to cancel the bronch for Wednesday due to his respiratory condition. After talks with the team we rescheduled for Thursday hoping his condition would be the same if not better. So that being said he had his bronchoscopy first thing this morning. What was discovered was that he is still considered a mild/severe tracheomalacia case. The anterior portion of his trachea in one spot is pretty narrow and collapses when breathing. There are calluses where this is happening.  A good amount of mucus and secretions were also suctioned from his airway. This means that when coughing Peyton is not able to move his secretions on his own causing respiratory issues. This will continue to happen unless fixed. That being said Dr. Jennings recommended that we go ahead with scheduling the aortopexy surgery. With this surgery he will go in through the chest move the major blood vessels and attach his trachea to his sternum. Seeing that at that point his trachea will be both attached to his spine and his sternum it will be 100% open. This should allow him to cough correctly and move his secretions on his own. The aortopexy is scheduled for this coming Tuesday. Until then we will hunker down and hang out with our friends in the hospital. Thank you all for your continued support, well wishes, and prayers. It has really help get Chris and I through this. xoxo

4/1

I am back! I truly apologize for not updating the blog since March 4th. Things with Peyton started to slow down and things with my work started to speed up. I felt like I did not have enough time in the day and unfortunately the blog fell to the wayside. That being said, we are doing great. Peyton has been discharged from the hospital with follow up appointments with each of his respective teams. In a nutshell this is what has been going on in the last few weeks.
-We were discharged and began learning how to use the G-tube and caring for it at home. The first night home the machine was not holding a charge and died. We contacted their customer support team and they had one delivered to us at 1:00am. It was frustrating and scary but we made it through! The G tube is going well and Peyton has adjusted nicely.
-Dylan got the GI bug not once, but twice. Poor baby. The first time she began throwing up in the middle of the night and continued into the next day. It was a few days until she was herself again. Most recently she got it two weeks ago. She started vomiting on a Saturday and I woke up Sunday morning around 12:45 am to take her temperature and find it was 103.8. I took her to the Winchester ER where they had a read of 104.5. We were there for a few hours, got her temperature down and were discharged. She has since become herself again:)
-Peyton got C diff again starting end of last week. Jennings team called in another Rx for Venco which we started him on Friday evening. I am just now beginning to see minor results.
-Peyton had an MRI done of his lower spine. They found a fatty phylum at the tip of his spine. This can later present itself as tethered spine. We had a urodynamic test as follow up.
-The urodynamic test was done. They stuck a catheter up his penis, an electrode up his rectum, and a needle in his scrotum. They were measuring his urine input and output along with his neurological reactions to certain things. The test came back normal.
-Peyton had a EGD done where they put him under and go in and reassess the esophagus. They were ready to dilate if necessary. They were happy with the size and dilation was not needed at this time. They said that all looked good! They took a biopsy of his esophagus so that we have something to compare to later on if necessary.
-We had a follow up appointment with neurosurgery. We talked through the options. We have two options- preform a tethered spine surgery where they go in through the spine, remove the fatty phylum and cut the ligament at the tip of the spine. This is done prophylactically. Our other option is to wait and keep doing urodynamic tests. If the problem worsens, do surgery. We are opting to do surgery in a few months.
-We are waiting to hear when our modified swallow study is scheduled for.
-We met with ENT and they scoped him to assess his vocal chords. They said his left vocal chord is wobbly but showing progression. They feel that with time it will regain full strength and use. Peyton's voice has become as strong as Dylan's at this point which is reassuring.

I think that about sums up the last few weeks. It has been extremely busy! We will continue Peyton's care through Dr. Jennings team at Boston Children's. I will periodically update the blog with news and pictures. Chris and I greatly appreciate everyone's support through this time and we could not have gotten through it without you. Thank you and we love you all. xo

3/4

Peyton is now donning a new accessory, his lovely g tube. He got through surgery like a champ. He seemed to be in a little discomfort after so he got a dose of morphine and from there received Tylenol. The weekend was uneventful. We are up and running using the g tube for feeds and to administer meds. Chris and I are quickly learning how to use the equipment and care for the site. We had all of our equipment delivered for at home use and will be trained on that this week. The first few feeds Peyton had some trouble tolerating but we think that it could have been his stomach stretching. He is doing great now and we are trying to get him on scheduled bolus feeds. We are starting to give him jar food in between his tube feeds. I also let him have 'puffs' yesterday and he loved them and did really well eating them which was great. I believe that we are moving in the right direction. As for Dylan, she is doing great at daycare. She is enjoying the other kids and comes home exhausted which is a win-win!

 Dylan

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

1/31

Big update...we are getting discharged tomorrow afternoon! Tomorrow marks the two week mark of being at UNC. I was in desperate need of a break yesterday so Chris's parents drove him, Dylan, Brady, and Cooper to Chapel Hill so that we only had one car here. Chris relieved me yesterday afternoon and I took Dylan and the dogs to our friends Doug and Krista's house in Durham. They were nice enough to let us stay for a couple of nights and Dylan has been having a blast playing with their son Caleb. I came back to the hospital this afternoon so that Chris could get us organized for the big drive tomorrow. It looks like we are on track for an afternoon discharge. From there we will head up 95 and make the trek to Boston. We are getting admitted to Boston Children's hospital on Monday. From what I understand (if we go through with surgery there) we will most likely be in Boston for about 3 weeks. I am excited to put this part of our journey behind us and move on to the next part. Every day that passes brings us closer to being home and healthy. God speed.

 Breakfast with friends!

 Our first big girl bath with Caleb

 Playtime with Caleb

Playtime before bed

1/29

Unfortunately, I don't have too much to update. We had a snowstorm last night that brought a couple inches of fresh snow to Chapel Hill. It was pretty to look at from our room. Other than that I have noticed that the steroids that they are trying to slowly wean Peyton off of are making him ravenously hungry...all...the...time. We are kind of in a holding pattern right now. Seeing that we are 'choosing' to go to Boston Children's UNC will not transfer us so we will be discharged. The case manager at UNC is working to help make sure that they don't discharge us, have us drive to Boston only to find out they don't have any beds. Boston is waiting to receive all of Peyton's records (and it is no short story.) Once they have received everything which should be tonight or tomorrow morning they will contact our insurance and verify everything. From there they will communicate with UNC that we are good to go and we will head up the road. I don't foresee this happening until at least Friday, sigh. We should know more tomorrow and I will update as soon as I hear anything. Goodnight.

 View from our window

 Hungry boy

Starving boy

1/28

Happy Tuesday:) Peyton is doing well although I think he is getting frustrated being hooked up to monitors and stuck in a room. He is eating well and fighting all of his naps. Chris and I have been doing a lot of work behind the scenes trying to get everything set up for our move to Boston although it feels as though we are getting nowhere. I am working with a case manager at UNC, Chris is working with our insurance company, and we are in communication with Boston Children's. My parents left today to head home. Apparently we are supposed to be getting a good amount of snow here, great timing. As of now we are just waiting to be released/transferred. I am not sure which will happen. I will keep you all posted. Stay warm.

Crazy hair after bath

 So great to spend a little time with Dylan

Messy feed