Things are going well here in Boston(knock on wood) and Maddox has made some progress. Instead of tapping his tummy they found a diuretic that works for him and we have definitely seen an increase in urine output. His stomach actually measured about 3-4 cm smaller this evening than it did last night, and Jeff and I could tell this morning just by looking at him that his fluid had gone down all over. His little face is so much thinner and overall he looks better.
He is also off the paralytic and doing well, which is a big step. They increased his blood thinner to help with the circulation in his legs. The leg that they did the balloon cath through had some blockage which led to his right leg looking a little purple and his foot looking dark purple or nearly black. Frost bite anyone? It was a little scary. Anyway the blood thinners are helping but also causing some changes in his platelets, so they are watching things closely.
Because there is less fluid in his stomach they have also come down on the pressure for the ventilator, meaning that they are letting his body do a little bit more work now to breathe and he is handling it just fine. As of today there are no immediate plans to do open heart surgery, but we are just watching and waiting and hopefully the doctors will get a better idea of what needs to be done as the week goes on.
At this moment Jeff and I are just grateful to see some progress and to be able to be here with Maddox. He sure is a handsome little man, and we are so proud of him. Today I watched as the nurse changed out some of his tubing and he kept opening his eyes to look at her, almost as if he was trying to make her understand that he was annoyed that someone was bothering him. He looked so sad and uncomfortable and I seriously wanted to cry. When he has open heart surgery I know he will be in lots more pain. That will be difficult to watch. I'm getting used to seeing all the tubes and machinery and his tiny body surrounded by pumps and monitors, but I'm not sure anything will really prepare me for what he will look like after surgery. I guess I should probably wait for that until we have a plan from the doctors.
Right now I'll just enjoy the
good days and be thankful
for the progress he is making.
I sure love this little man!
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I've been thinking about you all day and we had a lesson in church today about the blessings of the temple from a talk by Elder Scott. What an amazing blessing that we can be families forever and will never be parted. i always check your blog to see little Maddox's progress and so happy to see he's making small steps every day. you know you're in our prayers.
ReplyDeleteI am so glad he is doing better and things seem to be progressing! He'll be home before you know it!
ReplyDeleteSo great to hear that his fluids are down and he is making progress!
ReplyDeleteI thought of you too yesterday during our RS lesson...(which was different than the one mentioned above) which is to say, that you are an example of living faith if you will. You embody all the virtues that we teach and learn about on Sunday. And so, as your friends, when we hear truth taught to us, we automatically think of you and your graceful example.
Yay for a diuretic that works! That has got to be easier that another tap on his little body. It is so hard to see your little one being bothered all of the time, even when it is for their good. One of the things they emphasized with us was the need for Grant to receive lots and lots of positive touch and calming music. Since Maddox is off his prostaglandins, is he ok with touch? We would spend hours stroking Grant's head and holding his fingers since that was about all we had. Hang in there...sometime that waiting game can be so frustrating! We are praying daily for you! Do you have any more pictures? Be sure to take lots....even if it is sad to see now, Maddox will love looking at pictures of himself later! Please let me know if there is anything we can do for you guys!
ReplyDeleteI second the request for more pictures. I need to see my cute nephew!!! Love you and am so glad things are mellow. I will keep praying for good preogressive mellow days!!1
ReplyDeleteYou don't know me but I stumbled onto to your blog last week as I was googling Dr. Tworetsky's name and have been following it closely ever since. It seems that God has placed us on a similarly blessed and difficult road...my son has also been diagnosed with Aortic Stenosis and our path has led us to Boston children's hospital for a fetal intervention much like the one Maddox had. I am 24 weeks pregnant and headed to Boston next week for the intervention. Your story has both comforted and inspired me. I have been on my knees crying out to God on yours and Maddox's behalf.
ReplyDeleteI hope to meet you and your sweet Maddox next week when my husband and children and I come.
Thank you for your beautiful inner strength and transparency as you cling to Jesus every
small step of the way.
Psalms 46 came to my mind as I was in prayer for you.
"God is our refuge and strength, a very present help in trouble. Therefore we will not fear, though the earth should change and though the mountains slip into the heart of the sea...God is in the midst of her, she will not be moved; God will help her when morning dawns..."
~Melissa