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.

We are curently driving home in 5 o’clock traffic. But we aren’t even upset, because Gideon has been discharged from Childrens Hospital!!! You could say this is best drive in traffic ever!!

Last night Gideon slept on his daddy’s chest all night. Which meant I slept as well. 😉 I woke up around 4 am and offered to take over so Kevin could stretch out on the couch bed. Kevin looked at me and said, “I’m good, you go back to sleep.” Of course me being the submissive wife that I am (wink wink), I did as I was told. 😂

Kevin eventually went back to bed after I fed Gideon.

Mid morning the doctor came in and was impressed with Gideon’s fluids and food intake. So they unhooked his IV to see how he would do through the afternoon. (They left the port in, just in case…hence the big orange sock.)

Thankfully he continued to eat and drink well. Around 3 pm (after we all finally got a shower…hallelujah), they came in with discharge papers and we began to pack up.

We were blessed to have the same nurse, Kate, all 3 days that we were there. She was amazing as was ALL the staff at Children’s Hospital.

Gideon is still pretty sick. His cough sounds terrible, but since it is viral, it will just have to run its course. If he stops eating or drinking again we could have to go back. However, we are hopeful he is going to continue do well for us. I think sleeping in his own bed tonight will help a lot.

Thank you for your continued prayers for our little guy. 💜💜💜 We are excited to be discharged from Childrens!!!

It’s 10:30 pm and I just wanted to post a quick Gideon update.

This afternoon Kevin had an idea. He asked the nurse if they could move Gideon’s IV from his hand to his foot. Although we hated for him to get another stick, it’s proved (so far) to be totally worth it!! Gideon doesn’t seem near as agitated this evening. He tolerated sitting in his chair much better. Plus now he can use both hands to stick his vibrating tooth brush in both ears. I know it sounds silly, but that’s a big deal for our boy. Not to mention, he can play with his toys better! Especially the vibrating ball that bounces vigorously. It’s definitely a two-hander.

Also, he finished up a 4 oz packet of food and he took 3 oz of pediasure! That puts his total fluid intake (by mouth) at 12 oz for today; which not enough to remove the IV, but we are closer now than we were this morning.

I’m so glad they moved the IV. Not only does Gideon like to switch hands when taking his bottle, but he puts both fists in his eyes when he lays on his tummy.

Thanks for your cotinued prayers. I believe with all my heart they do make a difference!! Now we are praying that he sleeps well tonight…all night. 😉

I’ll do another Gideon update tomorrow.

Stay tuned..