We had a follow up swallow study done and the results were not good. We knew he was aspirating with liquids and for almost a year now we've been having to thicken any liquid we give him. Most of you reading this who know me, know I have always been hopeful when it comes to Tanner and generally speaking, I'm a positive thinking person about everything. Going into the test, I knew things had not improved and just wanted to confirm that, but in the back of my mind I thought maybe he HAD improved. Why would I possibly think this??? Because I'm his mom and as realistic as I am trying to be, I can't get rid of hope, even though sometimes it may seem easier. What did not cross my mind was that things were worse, yet they are. Not only is Tanner still aspirating liquids, he is now aspirating puree's. Eating is one of the things Tanner always did well. It brought him joy as he loved food, which in turn brought us joy. But it is now harming him and I must take it away. This was devastating and still very hard to comprehend. When tanner started refusing bottles I started looking into feeding tubes and talking to doctors and some parents. Our speech therapist found a special Sippy cup that poured the liquids out faster than squeezing from a bottle but slower than a regular cup. we were able to give Tanner his bottles thru this, but this was only a temporary fix. As a mother, I just want my child to be fed, to be happy, to be nourished and as healthy as he can be. So we were "considering" a feeding tube if we had to, but we weren't there yet. Then came the results of the swallow study. The nurse who conducted the study said Tanner's aspiration was "significant". Every swallow is probably difficult for him and could be another reason he is refusing bottles. Tanner is losing weight and coughing with his medications, which are all liquids, MUST be given and has also gotten difficult to give. For those of you who don't know, to aspirate means that liquid is getting into his lungs. When he swallows, some is going down the right way into his stomach, but some is not. If too much of it gets into his lungs, it could cause him to get very sick.
We've been thru a lot with Tanner, but so far, this is the hardest thing I've had to go thru and a terribly difficult decision. Some of you may wonder what the decision even is. This could be a matter of life and death, what decision is there? and you're right. But again, as a mother, there's that little thing in the back of your mind or maybe it's in the back of your heart, called Hope. Every day I think, "he took a bottle today, he's getting better", or "if we start this new medication and it works and his seizures get better, he'll start eating better and swallowing better". But the fact remains that my child is aspirating now and we need to help him. We have been incredibly lucky that Tanner has not been sick AT ALL really, but I don't want to wait until he does and then kick myself saying, "why didn't I get the feeding tube earlier".
We are awaiting scheduling to call us about surgery, to place a G-tube into Tanner's stomach. It will be in either June or July. Could be as early as June 8th. They will do the upper endoscopy at the same time. We will be in the hospital for anywhere from 2-5 days. We will still be able to practice feeding with Tanner by mouth, with just very little food and liquids. Only for the purpose of therapy, so he doesn't ever forget how (in case he gets better), and if he does, removing the tube is always an option or simply not using it. But for now, it will give us peace of mind that he will get ALL of his meds and liquids and nutrients to help him grow and survive. And our hope is that it will bring him no pain and even maybe relieve some pain he could be having now, that could even be leading to increased seizures. The other parents of CDKL5 kids I've spoken to say the tube was the best decision they ever made, but the hardest. So far, all I know is this is definitely the hardest. As I sit here writing this, I am thinking of yet another CKDL5 angel who gained their wings this week, but she fought this battle for 30 years!!! I only hope and pray that all these decisions we are having to make will increase Tanner's chance of having a long, happy, enjoyable life with us.
We hope to see you all at this years 3rd Annual Toasting Tanner, our fundraiser to increase awareness and research and funding for ALL kids living with CDKL5 and need our help, just like Tanner does.