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