Today was a drama filled one….to say the least.
We were taken down to a surgery waiting area early this morning to talk with and sign consent forms for both Interventional Radiology and Anesthesia. I felt ok about each meeting afterwards but wasn’t too sure they were taking me totally seriously about a couple of things. We were urging Anesthesia to give Cannon something on the tail end of the procedure to help him come out of it slowly and easily. The alternative can be a quick, agitated, and combative response were he is extremely upset and can possibly hurt himself or others. Our home hospital does this every time without issue. But apparently this didn’t happen today. The other thing we begged was that as soon as they took Cannon from Surgery to Recovery and BEFORE he began to wake up…..to come get us. It allows us to get his movie set up, along with all the things that make him comfortable and to be there to help hold him if things get bad. I mean, what 8 year old wants to wake up from surgery and see a bunch of strangers? You want your mom and dad or it’s scary! Especially with Autism. Well, this didn’t happen either. I was told it was hospital procedure that no one comes back to see the patient before they wake. I get it. It just know that it could have helped the situation and it stinks.
So, today he was having all the Manometry tests (Antroduodenal, Colonic, and Anal). He was having 3 sets of catheters inserted in these various places that would be left inside to measure contractions of these areas. The first would go down his throat, past the stomach, into the top of his small intestines…..I believe. The 2nd would cause his Chait Button to need to be removed and 2 tubes to go in in it’s place. The 3rd would go “where the sun don’t shine” and do its measurements there. The 1st and last were placed successfully.
I want to press “pause” for a moment and thank all who prayed for Cannon to get anesthesia FIRST today…..before his I.V. This DID happen and was actually done beautifully and with lightning speed. It could not have gone better. While waiting for anesthesia to get set up, Cannon began to “script” about a favorite topic…..Charlie Brown and the Peanuts characters. The Child Life Specialist heard this and produced a Peanuts coloring book for him to flip through. And some other guy in the procedure whipped out his cell phone and pulled up a Peanuts episode somehow! He loved it and was totally distracted when it came time to put him under. I sat on the table with Cannon in my lap, holding his arms. An anesthesiologist came in behind me and put the mask over his face. It was so quick and he fought so little. He just watched Charlie Brown on the phone and I even heard him say something about Sally calling Linus her “Sweet Baboo” through the mask. Silly boy! We were off to a great start!
We had been told that the procedure would take about 30 minutes before he would head to Recovery. But after an hour and some change, I was starting to wonder what was up. Then, someone came out of the OR and got us. We had been told a nurse would come out of a different door and take us to a totally different area when all was said and done. So, I was alarmed from the start. Also, the doc usually comes into the Waiting Area and tells you how it went before the nurse comes. But no doctor….just the nurse who came from the OR and took us to a small room with just a table and a couple of chairs and asked us to wait there for the doctor. I cannot tell you how quickly my heart began to race. I just put my head down and began praying with all my might. Eventually, the Interventional Radiologist came and started explaining a few things. The NJ tube and anal tube had gone in well and they had already performed the manometry test they needed on the lower part of his body. But, there was a problem with the placement of the colonic catheter. They successfully removed his Chait Button from his abdomen and replaced it with a slightly larger tube than the Chait in this pathway. This tube contained the catheter. He was also asked to place a much smaller tube next to that one and in the same pathway. This tube would allow those performing the test to administer food directly to his colon and move the test along. When he placed the first tube, he noted it was a tight squeeze. When he went to place the second tube, it was really tight but he continued anyway. He struggled to get it in and at one point decided to inject contrast to see if it was getting where it was supposed to. Once he did that, he can watch a screen that shows him Cannon’s insides and see where the contrast went. Well, the contrast didn’t go where it was supposed to which led him to believe that the second tube nicked or perforated the Chait’s pathway and it had gone in there. He said he wasn’t 100% positive that was what happened but he is very suspicious. So, Cannon could develop an infection. We have to start watching for those signs and get him on meds immediately if that happens. The IR doc would have preferred to begin them immediately as a precaution but the Head of G.I. has decided to hold off and wait for signs of infection. I felt so bad for the IR doc. He was visibly upset about this. He noted that he does this procedure so often and this very, very rarely happens. I am not upset. Things happen. It stinks but of all the things that they could have taken us to that little room for…….I think I will take this over some of the alternatives. Gotta keep it positive and keep moving forward.
We went back to the Waiting Area and waited for the nurse to come take us to Cannon. When she did, he was already awake. Grrrrr! I was not exactly happy. And sure enough…..he came out of it wildly. No med was given by anesthesia for easy waking and we weren’t there to hold him. AND he pulled the NJ tube out of his nose immediately. I will say I was upset about this one. When you advocate and advocate and advocate and tell people that these are the kinds of things that happen…..it’s really frustrating when it is disregarded! We came here to find out about his stomach. And this tube was the one that would have provided that info. And he was now awake from anesthesia. You cannot have anesthesia twice in one day. This particular tube has to be placed under anesthesia. It was a done deal. No test for that part of his body. I almost had to leave the room for a minute and cry. But I couldn’t….Cannon needed me. And didn’t need to see me upset. The G.I. doctor came in later and said that we will wait for the result of the test tomorrow. If it shows a problem with his stomach, he will consider keeping us here longer to re-do that part of the test.
We continued with the Colonic Manometry test for several hours. They were injecting sterile water through the catheters to measure the contractions and his body’s responses. During this time, we had to fill out some paperwork from the Psychiatrist that is apart of the Motility Team. He came in for a bit and spoke with us for a few minutes but was called away and never returned. I was disappointed that we couldn’t chat with him more. There were 3 nurses in the room with us for most of the day and they just fell in love with our angel. They doted over him…..talking and playing with him as much as possible to help keep him comfortable. One of the nurses even went out and brought him a snowball to play with. He had fun feeling how cold it was and touching Daddy’s face with his cold hand. When he said he wanted to build a snowman….she went out and got a cupful of snow. Then, the nurses began searching the room for “buttons (some red caps)”, “a hat (a medicine cup)”, and “arms (a tongue depressor broken in half.” It was precious! They were too sweet. One nurse, also, let Cannon squirt Daddy with a syringe of water. He loved that! I am so thankful for how incredible these precious women were with our sweet boy.
After the test was complete, we had to go back to surgery to remove the catheters and re-place his Chait Button. But, as I mentioned yesterday…..we hoped to have them REPLACE the Chait so we didn’t have to put him through another procedure when we returned home. (This button has to be replaced every 9-12 months and he is due for that change.) Since he could not have more anesthesia, this was going to be a bear. We had never even entertained the thought of attempting this back home with nothing. I immediately hit up my Facebook friends with an urgent prayer request and prayed under my breath like crazy. When I saw that there were only going to be 3 other people present, I admit I really worried. My husband was our rock today, though. Confident that Cannon could do it and that this was the safest and quickest way to get it done. I leaned on that and trusted his leadership. Sure enough…..CANNON DID IT! Our sweet boy did it! He got through the difficult removal of the crazy, long catheter (like this thing was SERIOUSLY LONG) and placement of a shiny new Chait Button like a CHAMP! He fought minimally and was so insanely brave! I was just staring at him in total awe! This was the power of prayer at work people! There is no other explanation! I watched God work in that OR today! My child is never that calm! To those who prayed……THANK YOU SO MUCH! You truly made a huge difference in my baby’s life today! I just cannot express my gratitude enough!
I gotta wrap this up! In short, we were unexpectedly discharged after a little while in his room. We are back at the Ronald McDonald House for the night. Head back to Nationwide in the a.m. for the final test. The dreaded Gastric Emptying study. He will have to eat a meal that contains scrambled eggs with radioactive material in them. He will then have a series of x-rays at various time intervals there after to watch them proceed through his body. To see how long it takes, if it gets hung up in a particular area for too long, etc. It will go from about 9 – 1:30 tomorrow. Afterwards, we will head over to the clinic and meet with the doctor for ALL the test results and recommendations.
Specific prayer requests for tomorrow…..
1) A complete, clear, accurate, and definitive result on the Gastric Emptying test. This will be our 3rd and we need this one to be a good one. The first couldn’t be completed because he kept throwing up. (He can’t take his reflux medicine the morning of and that day…..his body couldn’t recover.) The second, we feel was dumbed down too much. His doc was so concerned with just getting the test completed that he put him on clear liquids for 2 days prior. So, he virtually had nothing in his system and the meal passed right through. We want to know how his body reacts to FOOD. Because we want him to be able to eat FOOD all the time from here on out. He has eaten 2 meals and a snack since coming off clears earlier today. We hope this is enough to get an accurate picture. And that he will not throw up at all before or during the procedure!
2) It is midnight and Cannon is still awake. Something is bothering him. I am praying he is not developing an infection from the mishap in the OR this morning. Prayers for no infection would be so great!
3) Please pray that the test results will show WHY Cannon is hurting. We cannot go home with nothing. We have waited too long and come too far. Please pray that no matter what they show…..that this doc will have compassion for him and try to come up with solutions to give him a better quality of life. The Psychiatrist today asked us why we were here. My response was that all we have done for the last 5 years is watch Cannon suffer and deteriorate. We seek a better life for him. One that is relatively pain free, where he can eat food, and be a happy, healthy little boy. That is it….plain and simple. This is the big one! The biggest prayer request of them all. This meeting with this doc…..tomorrow……has the potential to change the course of Cannon’s life for the better……finally! Our knees are raw over this one. We need this. Cannon needs this.
Good night friends! If you have read this far…..you are a saint. Thank you for praying us through today’s drama. Hope will lead us on!