Maddox was released from the hospital on Sunday afternoon. Grammy and Grandpa Sherwood came Saturday to help and they each took a turn staying with Maddox at the hospital to give Jeff and I a chance to go on a date and to be able to get some much needed sleep.
Maddox was home for all of a few hours on Sunday, before pulling his G-tube most of the way out. There is a balloon under the skin, which is inflated with water, that holds the g-button in place. This balloon had sprung a leak and deflated, thus allowing the g-tube to pull out. So, back to the ER we went, got a new G-tube button put in place -the old one had attached to the skin at one point and needed to be clipped- started his feeds again, gave him his meds, and got home by 2:30 am.
My Dad left Monday to go back home and my Mom is staying until next Wednesday. I dread her leaving, but I'll enjoy her while I can.
Maddox has been in a lot of pain and spends a lot of time screaming. We think a lot of his issues are GI related. We had an appointment with the pediatrician today and he agreed so we are getting in to see a GI specialist soon. Maddox had an appointment with Endocrinology yesterday and they went up on his thyroid replacement and scheduled another appointment for the end of the month. We will also be meeting with a nutritionist to help us fine tune Maddox's nutritional and caloric needs. The goal is for Maddox to be gaining weight consistently and follow the growth curve. If he falls off that curve then he will most likely be needing more heart surgery.
We will also be starting physical, occupational and speech therapy soon, which I am grateful for. The different therapists will come to our home and work with Maddox. I have been very nervous about doing anything like tummy time or other normal baby stuff with him due mainly to the big thing sticking out of his stomach. He is still very tender around his g-button, and his significant reflux issues make me not want to have him on his stomach. We never lay him down flat anymore, not even to change his diaper, but always have him laying on an incline with his head up. This being said, the physical and occupational therapists will be very helpful in strengthening his muscles and utilizing his body like he should be. I am really excited about the speech therapist who will help us with oral feeding. First we have to do a swallow study to make sure that everything is where it should be and to ascertain whether or not Maddox aspirates when he swallows. Then we'll be able to slowly get him feeding orally, or at least that is the goal.
There is just a lot to do for this little boy and it is pretty overwhelming to be in charge of all of his care. It is heart-wrenching to hear him scream his little heart out in pain and not be able to do much more than give him a little Tylenol. The doctor told me today that even Tylenol shouldn't be used for chronic pain due to its affect on one's kidneys. Poor little boy. I wish I could give it to him around the clock, but I guess that's not the answer. Hopefully the GI doc will know what we need to do to get his tummy feeling better and give him the chance to feel good and act more like a normal baby. Right now we are just living a day at a time.
I shouldn't complain though. We have much to be grateful for. For all intents and purposes, Maddox really shouldn't be here, but is, only because it is part of our Father in Heaven's plan that he should be here. My cousin Josh and his wife Amanda lost their little boy this week, who had been healthy, but had fallen and had bleeding in his brain, and who died during surgery. This is their second son to return to his heavenly home. Their first born is 4 years old and has lost both of his little brothers. Really, who I am to complain. The Lord has a plan for us and often times it doesn't make sense. The only thing we can do is try to live happily and make it through the challenges we each will have. Please pray for Josh, Amanda and Zach. They will be burying little Tyson this weekend next to his brother Andrew who died less than three years ago from SIDS. Our challenges pale in comparison. This life is a test, and not an easy one.
oh Alissa, we are praying our hearts out for you and your family - I am so sorry for your cousins and for the stress and pain you are all going through. We love you so much and wish every day that Zach and I were closer so that we could help out more in some way. Please know that we love you all so much and that Keegan still misses Keyan and Brynna so much!! xoxoxo
ReplyDeleteI'm so glad to hear your mom is there so you can get some rest. My heart goes out to your cousin. I can't imagine what she's going through right now. It's hard for me to understand why she has to go through with loosing two children. Enjoy the time you have with your mom!
ReplyDeleteThinking of and praying for you guys!
ReplyDeleteUgh. I can hardly see through these tears. I'm so sad for what you and your family are going through. I can't imagine... No one should have to go through burying a child. I have nightmares about stuff like that, and pray almost daily that I'll never have to face that challenge. I hope God himself is cradling them through this.
ReplyDeleteand YOU... poor you and jeff and poor Mads. stupid G-Tube... those things have more problems adjusting to new little bodies... they eventually become wonderful though. Ugh. I really have nothing to complain about- Taylor went on Zantac yesterday for her reflux, and I'm finally w/o fever from mastitis.
I'm counting my blessings. You are so strong and are blessing so many people through your strength. But please break down once in a while to make the rest of us feel normal!!!