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