(Mason is kicking back in the stroller in hospital pajamas
on Tuesday when had to get a replacement g-tube button.)
Sweet Mason had a little accident on Sunday night and I feel awful about it! After I was done giving him a G-tube feed I got him down out of the high chair, and then when I would have usually taken out the little 12 inch extension ( it is connected into his g-tube button when giving meds or a feed), but I got distracted when I saw Ammon standing at the top of the pantry shelves. I quickly tucked the extension into the waist of his pants (but not all the way I guess), and hurried to get Ammon out of the pantry. In the mean time Mason scooted straight for the basement stairs (hmmm... someone left the door open, because normally I have someone be with him when he scoots down)..started scooting down, but must have slipped on something....a toy, O2 cord,...and tumbled to the bottom, ripping the g-tube extension and button right out of his tummy on the way down! Oh, was he screaming! It was awful!
I quickly grabbed my emergency g-tube kit and frantically reviewed the instructions on how to insert a temporary tube. I had been taught after his g-tube surgery that you need to do this within 10 minutes! Then, Mark held poor little Mason while I (why me?!!) tried to insert a temporary tube into the little whole in his tummy. Mason was screaming so hard we were scared for his little broken heart! All our other kids were crying!It was horrible! I could not get it in so I called the GI doctor on call at Primary's. He tried to talk me through it and even said to try re-inserting his button or try a size smaller tube from my kit. Well, two problems...my kit only had bigger tubes than the one he had in and only one packet of sterile lubricant! Yikes! I couldn't get the button in either, used up all the lube....and his whole had already started narrowing.
We sent our kids to get our neighbor who is a nurse at Primary's (thanks Michelle) to come help! She had much steadier hands than me, but she had no success either! We finally decided to insert a NG-tube (much smaller because its the one that goes down the nose), because I had some unopened ones from when Mason came home from his first surgery. (We've got our own medical supply and pharmacy here at our house! ) At least the NG would hold a small whole open and I could still give him his night meds. We were embarrassed but, the doctors were actually quite impressed with our plan.
Then we headed for the ER room at Primary's to either get him a new button or a better temporary g-tube. 4 hour later at 2am we headed home, after making Mason completely miserable being poked all night in his tummy (completely awake, with no pain meds, besides the Tylenol I gave him at home) , crying every time another doctor or nurse came near him, they finally inserted a temporary tube 2 sizes down from his button. And we learned along with the ER staff, that the hospital doesn't even stock G-tube buttons. They have to be special ordered! Crazy!!
Tuesday, Mason and I headed back up to Primary's for an all day stay! He had to get a new button placed through same day surgery (after it had been ordered of course on Monday for same day delivery....crazy they don't stock them in the GI clinic!) Because of Mason's heart condition, there is always serious concern with any kind of anesthesia, but there was no way they were going to do it with him awake...for his sake and the doctor's! He always has a cardiac anesthesiologist so I know he's in good hands, but it's still hard to leave your baby as he's crying in the arms of a nurse he doesn't know.
All went well, and I will do my best to make sure that never happens again!!!
A few lessons learned....never leave the extension in, keep the pantry shut (it has a lock, but that doesn't help if it is left open!!!!), keep the basement door shut, have a better prepared emergency g-tube replacement kit (in fact, the doctor ordered 2 extra buttons and 3 smaller temporary tubes for my kit) and guard that g-tube button with your life......Sunday night was a nightmare! More pain than Mason needed right now!
While up at the hospital I met a sweet young Mom, she was maybe 20. Mason and I were standing near the radiology waiting area (Mason needed a 'barium x-ray' to make sure the new button was placed correctly) and she came over to me to say, "He is so cute". Then noticing his oxygen tubes and his hospital pj's he was still in from the g-tube surgery, she asked "What is wrong with him?". I explained he was just there today for a minor g-tube surgery, but that the oxygen was because he was born with a heart disease.
Then she asked, "what can they do for his heart?". And as I began to tell her he'd already had two open heart surgeries her eyes began to fill with tears. At that point I decided not to explain that now he needs a new heart and lung, she had already been emotionally touched by a simple beginning of his story. I asked her why she was here with her baby girl and she told me she was getting an ultrasound because of a reoccurring bladder infection, but then she went on to say ...."this is nothing compared to your little boy". She was so concerned about Mason that she then asked, "He is going to be okay?".......I pondered a moment and then holding back my own tears I gave her the short but sweet answer I give my kids...."We sure hope so, and we feel blessed he is ours." I then wished her luck with her little girl and we headed on to get Mason's x-ray.
Little did that sweet mom how she had touched my heart that day. All the way home I cried just thinking about her tears over his two heart surgeries. She had no idea about the rest of his diagnosis or prognosis. She helped me realize once again what a true Miracle he is in our lives. What a Miracle it is that he lived past 3 days old! What a Miracle it is that he looks so good and is doing so well right now with what was seen on his heart cath just 4 weeks ago! What a Miracle it is that he is now 22 months old! And I honestly ask myself..... how can such a sweet, adorable Miracle like Mason bring you so much joy and happiness but yet now with his latest diagnosis, bring you so much heartache and fear? I am grateful to my Father Above for the gift of Mason in my life. I continue to pray for more Mason Miracles and for His comfort and guidance for the rest of our journey that lay ahead.