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