Could it be?! Josiah is free of cords, tubes and monitors? Well not quite, but definitely the closest he has ever been to freedom from devices. He has been off the Apnea/heart monitor for a little while now and the Dr. should be discontinuing it by the end of the month. Unless something shows up on the last reading. We should know within a week. I remember the day Emily was discharged from use of the monitor, it was 2 weeks past her 1st birthday and I was a nervous wreck! I had an awful time without the "comfort" of being alerted. Its amazing how much my faith has grown in 2 years. I really feel at peace with not having a monitor on him. I am able to rest easy, knowing that God is taking care of him. I feel rather confident with Josiah's abilities now. I don't stay up all night staring at the monitor or counting each respiration these days. That's not to say I don't have the sound monitor up to max volume to hear his every move or that I don't check on him before I go to sleep. I am still a concerned mom, I have heard the term helicopter mom used before and I feel that is appropriate for me. Hey, I don't mind being labeled as a hoverer. Learning that I am not the one in control has actually made life easier. I cast my worries and uncertainties among God and I am able to sleep without the fear that no one is watching Josiah. I am actually excited to return the monitor, it defines his progress!
The gastric tube will remain part of this family for at least another 4 months, but probably another 6-8 months. I will be happy to part with this member, when the time comes! Right now it is utilized about 3 times a day for burping and I usually give him his medicine straight through it. Sometimes I wish 2.5 year olds had little holes in their bellies for medicine insertion HAHA! Tuesday we got a new tube delivered. This one is called a "Mini" the previous one was a "Mic-key", yes I do see the humor in this. The Mini is designed to be lower profile, so that he cannot grasp it as easily and so tummy time will be more enjoyable. Its flexibility puts less strain on the tissue around the site, in turn, causing less irritation. The battle we were fighting against the granulation tissue is calming down, in our favor. He was having to be cauterized once a week for the mass amount of growth around the site. I am happy to announce it has been 2 weeks since last being cauterized. Tissue is forming but it has not gotten out of control. We will probably have to take him back up to the Children's Hospital next week to have it burned off. Once every 3 weeks is a huge improvement though!
My abilities as "strong mans mama" were tested Tuesday when we had to place the new tube. The process was supposed to be a simple and quick one with minimal stress and pain....yea well, by now you should know, that's not how we do things. That morning with big sissy asleep, mommy and daddy sterilized a section of Josiah's room. Gathering all supplies and laying our son down on sterile mats we turned a small section of our house into our operating area. I scrubbed in and prepared for the quick procedure. Finally, we were ready. With Chris by my side holding Josiah's arms down and talking sweetly to him, I removed the tube and cleaned up the site. Now I was looking down into a hole in the abdomen of my 6 month old son. I removed the new tube from its sterile packaging and prepared it as instructed to insert into that crater. With an anxious heart I realized it was not going in all the way. Having been informed of all the negative endings in a site closing up, I began to get more stressed. Grabbing my phone, I called upon my 3 "fall back" nurses for support. Being that each of them work day shift I could not get anyone on the phone. I then went through the boxes and boxes of medical supplies that line Josiah's bedroom and pulled out a sterile nasal tube. I put the lubrication on it and working it in, I was able to see that the tunnel from abdomen wall to stomach, was still intact. This was reassuring, we then knew we just had to work the g-tube in. I attempted widening or dilating the site with the NG tube so that we could get the much larger gastric tube in. Still to no avail, we decided to pack the site with gauze and take yet another $1,000 emergency room trip. Just then, Chris gave it an attempt and with a little force "popped" it right into place. I cleaned him up and with my trusty med tape and gauze, got him all put back together. This is a process we will have to repeat, as the child grows, the stomach grows but the tube does not. This is his 3rd tube since the operation in January. The parents of g-tube patients are trained and expected to preform this procedure at home. However, we are not "trained" on how to handle 2 year old sissy waking up and standing at the doorway singing sweet lullabies to her ailing brother. Its amazing how quickly you put on a happy face and toughen up when you need to be "strong" for your kids.
SO, now weighing in at 14.1 lbs and 24.5 inches, Josiah is really growing. He has finally outgrown many things and has passed them down to babies smaller than he. Something that for a while, seemed impossible! He is wearing 3 month clothing and size 1-2 diapers. He has a head full of hair, proof that he is getting the nutrition needed.
Through all of this, I am that much more certain of where I am being called to. I will be a RN in the NICU I am 100% sure of my calling.
