Mommy Confessional: Day #8 Mommy was right

We had a really long night last night. At 4:45pm yesterday they weined Liam's oxygen down to .75 litters. Within half an hour I started seeing it effect him. He became extremely tired but restless. He tossed and turned all night long, cried out as if in pain. Within 30 minutes he seemed to no longer be able to breathe from his nose. It sounded congested so I had them suction him. Nothing came out. He's not congested his nasal passage is swollen. This is another thing that happens when we try to wein. I had fed him solids at 6:30pm. He ate 1/4 a tub of bananas, 1 bite of mashed potatoes, and 3 bites of peas. 20 minutes later he threw it all back up. I warned the doctor that weining wouldnt go well. I told her all this would happen. Ofcourse I didn't want to be right and in a situation like this being right feels bad. So DR Ligeate said to turn his oxygen back up to 1 litter, but not before she got her two cents in.
"You know he shouldn't react this way right?" She asked me.
"Ofcourse he shouldn't but the fact is he does" I responded. "I understand the ultimate goal is to conpletly wein him off oxygen, but I cant stand here and let it be done at his expense"
˝thats not my goal. My goal is to give him the healthiest lungs possible. Oxygen is toxic, albuterol isnt˝ she explained.
"Albuterol treatments every 5 minute's wasn't working. We have to do whay works. Oxygen is working, albuterol isnt. If you want him off oxygen your going to have yo find a way to keep the pressure going into his lungs. We know he needs the pressure. UCSF was trying to do pressure at home without oxygen when he had his big desatting episode." I told her.
"Turn his oxygen back to one. Ill write the orders to not wein and have Tablezo (pulmonologist) come talk to you tomarrow" with that she was gone.

She did throw in a shot at me before she left.
"Does he sit?" Lageate
"Yes but hes wobbly and not really on his own" me
"Its jusg everytime im in here he's on his back. Do you work with him?" Lageate
"Everyday most the day. You ever notice everytime you walk in im eating lunch?" Me

I think her pride was hit that she was proved wrong and that I called her on it. Not that I blame her but come one. We have bigger issues than me doing physical therapy with Liam. I can't work on his sitting while im eating. Im have to eat and am allowed a break. I dont leave him and go off walking, shopping, getting my nails done (even though I probably should take some time for myself). I sit here and play with him, soothe him, make him feel better anyway I can. I do take a little offense to what she said. I tried not too, but Im only human.

Liams oxygen went back up around 1pm. Within the first hour of increase, his nosal passage started opening back up. He became happier and less whinny. By the end of the second hour, he was breathing through his nose again.

Started rolling around the crib playing and jabbering.

He got up onto his knees like he was going to crawl.

And even fell asleep for a nap without fighting it.

Tomarrow is another day. Ill be making my case with pulmonology, praying they see reason. If they would just work with me, together we could figure out whats best for Liam. Tomarrow Lageate will talking to case management about getting a monitor for Liam as well as talking to nutrition about getting the right caloric adative for Liam. Which means I will also have to talk to case management and nutrition. We wont be going home tomarrow. We probably wont be going home on thursday. If we're lucky we will get to go home by monday. But when I take him home I want to know we did everything we could this admittance.

I text Liams pediatrician this morning to let him know that Liams been in the hospital. He said he'd call them for info and told me not to give up no matter how frustrating this gets. That we will find answers. He even sent me a pic saying that it "always got me through hard times and adversity". It made me smile, and gave me more courage to put my foot down today and stand up for what I believe in and give my son a voice.

Even though that frog is being swollowed, he's still fighting back and will continue until his last breath. Its inspiring.

As far as changes go, increasing his oxygen back to 1 litter is all thats being done today. "Slow and steady wins tbe race" snd we will win. We're going to kick CDH's @$$ and come out victors. We are declaring war and intend to win.