We are home again.

I am so glad we are home again.

Gideon was discharged from the hospital Wednesday at 2 pm. To say we were ready is an understatement. He is eating and drinking “enough” but we will be following up with a gastrointestinal doctor in the coming weeks. A g-tube is in our future, but he needs to be well for 6 weeks. They are concerned he will not make it through a surgery with this current virus.

Gideon is still very sick, but in a much better place than he was last weekend. I think being home has made a huge difference. The photo at the top of this page was his first official smile since he got sick two Sundays ago.

We appreciate your continued prayers. We are so thankful for all the love and meals that we have already received from our family, community group and church family.

Tonight someone anonymously dropped off some AMAZING cookies on our doorstep. I’m going to need that person to anonymously drop off the recipe as well.  They were SO good!

I have so many people that I want to thank and recognize for loving us well during this time, but I’m exhausted and in need of much sleep. So I will save that post for another time. Until then, please know that we are so thankful.

Good night and God bless you all!!

So we are still at Childrens.

Gideon is doing better being off all the meds. He’s more alert, calm and sleeping through the night. However, he is not eating or drinking “enough” to go home just yet. They went ahead and started IV fluids for hydration again tonight around 10:30 pm. Unfortunately, they had to start a new line because his current line was clogged after being capped off all day.

The throat culture they did here came back clean so he does not need IV antibiotics. So that’s good news.

Overall this bronchiolitishas been rough on our boy. Hopefully he’ll take enough liquids by mouth tomorrow so we can take him home. Gideon misses his siblings. (They came to visit for Mother’s Day and it made him happy.)

**Side note for those who have asked. They can’t do a g-tube until Gideon’s been well for 6 weeks. So we really need him to pull through and stay healthy till then.

Hopefully next time I update I won’t have to say we are still at Childrens.

Thanks for your prayers.

We are back at Childrens Hospital. And we’ve been here since Friday night.

Here is what brought us back.

This past Monday, our family doctor did a throat culture in addition to blood work and an IV. Friday afternoon they got his results back from the culture.  Gideon has a bacterial infection called pseudomonas aeruginosa. And apparently, the only antibiotic that it’s not resistant to is an IV antibiotic called Fortaz. And it needed to be administered every 8 hours for four consecutive days.

Home health was going to come out to our house to do IV and the first dose…then we would have to dose him daily after that. But home health couldn’t come until Saturday; and since Gideon had not eaten since Friday morning, we went back in the ER so they could start the IV antibiotics and fluids to get him through the next four days.

Unfortunately Friday night Childrens did not start the IV antibiotics for the pseudomonas aeruginosa. Long story short, they wanted to do their own throat culture. (Which they could have done when we were here Tuesday but they said what he had was probably viral.) And apparently our family doctors results were not sufficient for them. Which meant more waiting for a new culture to grow.

In the meantime they started him on a stress dose of steroids for adrenal insufficiency… which have proven not helpful. He’s not perking up like he usually does. His appetite is not increasing like usual. He has been more irritable and fussy the past two days then he has been all week (and he had no continuous steroids when we were here Tuesday-Thursday).

We requested decreasing steroids overnight to see if that helps his irritability. All they want to do is give him more medication to compensate for the side effects of more medication. Our little guy hasn’t been on any meds for five years (except for a small time when we tried steroids and they did more harm than good…so we weaned him off).

Hopefully we will get culture results back today or tomorrow and we can either treat the bacterial infection or go home (if it is negative).

Kevin and I are discussing options for Gideon. Our next possible move could be a G-tube.

The staff here has been great, but we want to go home. Coming back to Childrens has been very disheartening. Not how I envisioned spending my Mother’s Day.