[Sorry, I accidentally published the post before I finished it. Here’s the completed post.]
I posted on Facebook yesterday that we had been discharged mid-afternoon. I apologize if some of you that only read the blog didn’t know until now.
We made it home and have been enjoying being here so much! As soon as we walked through the door, Judah seemed to realize he was home and perked up a bit. Here’s a photo taken last night in his own jumper.
Thank you to everyone that has been following us and praying for us! It really means so much to us!
Well, it’s been a very up and down couple of days for us. His fever would come and go without any explanation as to what was causing it. He had been on antibiotics since Friday and getting regular doses of Tylenol and Motrin, and the fever would still spike through. Because all of his tests and cultures kept coming back negative, everyone has been at a loss. Today, we decieded to stop the antibiotics and the fever has been gone since late morning. Whether it’s a coincidence or a direct result, no one’s sure yet. We just hope it doesn’t return.
In other good news, Judah turned one yesterday! It’s been an unbelievable year for the three of us. One year ago today they gave us the news of Judah’s heart defect. Needless to say, it completely wrecked us. We’re so grateful that he has made it through so many hardships. Just the fact that he was able to sit on our laps tonight and watch a movie with us fills our hearts with joy.
More good news
His drainage was low enough over the weekend that they removed the chest tube yesterday morning. He’s happy about that!
He passed his swallow test (pharyngogram) with flying colors! He’s also started drinking (a very small amount of) water from a sippy cup and baby food from a spoon! This is a HUGE step that we didn’t expect to happen until winter-spring. He’s not taking a lot yet but the fact that he wants it is amazing!
The amount of times he throws up during the day has dramatically dropped since surgery and since switching formulas.
Even though we’re still here we have a lot to be grateful for. Please continue to pray that the fever does not return and Judah has a good night. If that happens, we start to talk about going home.
Thank you all so much for sticking with us through this past year. Your words, prayers and gifts have blessed us beyond what our words can say. We’re so grateful for what God has brought us through and that He has never left our side.
On Tuesday Judah wasn’t feeling great and had a fever. They ran tons of tests and cultures, but none of them came back with anything to speak of. He was put on two broad spectrum antibiotics and he turned around pretty quick. He was doing well so they took him off the meds. This morning Judah had a fever again and he’s been pretty cranky all day. Despite getting Motrin and Tylenol, his fever hasn’t broken all day. They’re currently running more tests and cultures but we won’t know much until tomorrow. His white blood cell count is normal, which is strange, because if he had an infection that number would be high. Right now, no one is really sure what the issue is so we are putting him back on the broad spectrum antibiotics.
We were looking at the very real possibility of going home on Monday, (which happens to be Judah’s 1st birthday) but now that’s in jeopardy. Above all, we want him to be well but we would also like to bring him back home.
Please be praying that his temperature would drop and that whatever is causing the fever would be healed.
Just a brief update. Judah was pretty crabby throughout the day and it now looks like he may have an infection. This comes as no surprise because of the close proximity of the trach and the incision site on his chest. Antibiotics were started this evening and they have taken all kinds of blood work and samples. We should know more details over the next few days. At this point they fully expect him to respond quickly to the antibiotics and be back to normal by Thursday. He’s also been very itchy. He had a bad rash at the end of last week that has largely cleared up but he’s been itching around his drainage tube site and trach area a lot. We’re not really sure why but we would love it if it wasn’t an issue.
Please be praying for the infection to be healed and his itchiness to subside. Our God is able.
If you were following our blog last year, you might remember this blog post about Enfaport. The problem then is the same problem now: a chylothorax. Basically, until this heals (in about 6 weeks), his body can’t handle a diet that has fat in it. We know this is a problem because the drainage from his chest tube is cloudy instead of a yellowish-clear. Yesterday, we switched him to Enfaport, a nonfat formula, and we are already seeing an improvement. This really isn’t a big deal and it shouldn’t keep us here much longer than we already expected.
At this point, our largest obstacle in getting home is his chest tube. The color needs to pretty much be clear and the amount that comes out needs to be consistently very low. He has been decreasing pretty steadily so we are grateful for that! Our other big concern is infection. So far, it’s been good but the risk is high for someone that has a trach so close to the incision. We, along with our nurses, have been extremely vigilant about his chest dressing but it doesn’t take much to cause a problem.
Please be praying for a clearing up (in color) and a drastic decrease in the amount of drainage from his chest. Also that there would be no infection or any other complications.
Judah is very much back to his happy self. We’re so happy about this! We stopped his round-the-clock doses of tylenol and he has done great. We thought it would be weeks until he was back to himself but it’s only taken a week! We’re very grateful for such a happy baby.
Thank you all so much for your prayers! They mean the world to us!