Apr 27 - Removing Negative Influences

Apr 27th - Kyle's NG tube was short lived! A day and half after we put the tube back in he puked it out at bed time after taking his night time medications. I think the tube was bothering him and making it difficult for him to swallow now that he's been drinking milk without the tube for so long. He was visibly uncomfortable when he swallowed the medications (we were still giving him medications orally even though we weren't feeding him orally) and he was coughing afterwards and puked. The tube came out with it. Since it was right before bed we weren't going to put the tube back in right away because he wouldn't need it for the night. The feeding consultants told us to try leaving it out for the next morning and try to offer milk again, casually, to see if he would show any interest. Miraculously he did show interest and took milk during half of the offerings the next day so we decided to leave the tube out. The next day he refused milk for the first half of the day until 4:15 in the afternoon but started taking 4-5 oz each feeding (which was a lot for him). We weren't so concerned about volume at this point as what we needed the most was to gain his trust back, as long as he was physically safe (i.e. not dehydrated). We needed him to feel comfortable eating again, both physically and mentally. So we decided to give him a few days without the tube to eat comfortably (physically), and gave him absolutely no pressure (mentally). We waited until he reached for the milk glass before offering and we absolutely stopped when he pushed it away. We did not encourage him to take more and we made sure we were very careful with the flow of the milk so not too much went into his mouth at a time (although the trade off was that too much air went in but he's been pretty good with burping on his own so it wasn't that big an issue).

I've also started talking to a social worker through the feeding consulting firm about dealing with my own stress around Kyle's feeding issues, because the feeding consultants felt that it was absolutely crucial that I got help to learn to reverse the trauma from all of Kyle's issues. They felt that Kyle could not leap forward without my own anxiety being relieved first. They kept saying that he can sense my stress and anxiety which turns into his own stress and anxiety. I know for a fact that Kyle cries and gets upset when Josh and I argue. He can definitely tell by the tone of the voice that we are upset. They also believed that I have PTSD (Post Traumatic Stress Disorder) and for parents with medically complex kids, PTSD finds its way to creep in once the child has passed the most critical stage of his life. When the child is critically ill, you are running on adrenaline. You are not feeling the stress. When the child is no longer in a life or death situation and you finally find yourself sitting down and taking a breath is when PTSD is able to sneak it. It makes perfect sense. And the stress I'm feeling is not something that I can just shut down on my own. I just can't tell myself not to have those negative feelings or thoughts. If it was that easy I would have done it already. I would need professional help to deal with the PTSD. They also strongly believe that Kyle's feeding issues cannot be resolved if I don't get help myself first, because his trauma around feeding came from my trauma, and he cannot feel comfortable to eat mentally if I can't heal my trauma. The only way he can learn to relax and trust food again on a consistent basis, and not just half of the time, or to shut down again every time he experiences something bad (vomiting, choking, milk going into his nose) is through love and trust. Love and trust he can only get from me. It only takes one bad incident that lasts less than a minute to destroy the trust (trust in me, and trust in food) that takes weeks or months to build, and rebuild. Trust is the only road to volume. And volume is what leads to weight gain and the permanent tube free status. Right now we cannot worry about volume. If he still cannot feel comfortable to increase his volume enough to sustain himself then we'll put the tube back in while we continue to build trust.

To decrease my anxiety level, under the guidance of the feeding consultants, I've also decided that I need to get rid of all the negative influences around me that is giving me pressure, both from within and outside pressure, directly spoken, implied, or invisible pressure. It was this pressure that drove me to push for more volume and traumatized Kyle to the point he shut down. It was this pressure that destroyed the trust we spent so many months to build. And therefore I've unfollowed a few Facebook group and friends. I don't need to see how much other kids are eating orally or fed through the tube and still can't gain weight, or how someone else's healthy child is eating all these foods and is asking for more. Every child is different and their nutritional needs are different. Seeing how much other kids eat or are fed only makes me worry and jealous, and it's giving me pressure. Any source that might lead to comparison is bad for me mentally and needs to be removed. I might also have Josh take Kyle to doctor's appointments for a while. Even without them directly saying anything about Kyle's weight just the slightest hint of a frown or an innocent remark from a nurse instills invisible pressure in me. I am also going to ask Kyle's therapists to stop asking about his feeding progress, because that too, is giving me invisible pressure. Kyle was doing fine eating on his own, but one casual comment from his GI that we should let them know right away if Kyle loses weight gave me pressure and made me nervous, which made me push for volume, and in turn led to the horrible incident that made him shut down.

To make Kyle feel more relaxed, in addition to the relaxation exercises I'm doing on my own recommended by the social worker, I have also been doing "mommy and me" stuff more with Kyle, things that have nothing to do with therapy. We cuddle a lot. I sing to him. I rock him back and forth. I read to him. I talk softly and point out everything to him - just lots of good bonding activities. Since the weather has been nice we also hung out at the front porch and walked in the front yard. We took him out for a walk and he loved it! I do feel more calm and relaxed. Taking deep breaths (one of the relaxation techniques) really does help. And I can start to see that Kyle is happier and more relaxed as well which really is translating into taking a bit more at each offering.

We still have a long way to go. Trust is not built in a day and certainly can't be rebuilt in a short period of time but we will get there. I just hope he will get there before we have to put the tube back in for supplementation, but if we do end up needing it, that's OK too.

Hello bunny!