Day four. Overwhelming kindness.

 Jake finally arrived in his room around 8 or so on Monday night. Still high on fentanyl he was feeling okay, even managed to eat a popsicle and drink some sips of juice. I was riding high feeling like recovery would be a breeze. 

 Day 2. When Jake wasn't screaming in pain he was sleeping. Like this. Only like this, directly on me, IN his crib. My back is killing me. Hospitals suck for sleep, we were up every 30 minutes all night long doing vitals or because his monitor kept going off every time his pulse ox dipped below 80 (which was frighteningly regular.) He refused to eat or drink a single thing and getting medicine into him became an epic battle (he usually just happily drinks it down). Not so much when he is in pain and defensive of his mouth. I've never felt closer to him ~ he refuses to sleep unless his arms are around me or he is sleeping on my chest. Not comfortable, necessarily, but I'm so happy that I can provide him at least a little bit of comfort that I really don't care. 

 Day three. Jake meets June. She perks him up immensely. 

 I am trying anything and everything. Eggs, yogurt, pudding, smoothies, popsicles ~ you name it and it appears at his fingertips. He WANTS to eat ~ he takes bites, then panics when he realizes that he has to SWALLOW said bite. Then it comes out, then the crying starts. It is incredibly painful to watch a very hungry baby who is unable to eat. Its Thursday at 10;30 now, Jake has not eaten since Sunday night. They are not giving him IV nutrition, only fluids. He has to drink 12 oz and stop having the oxygen decels. Liquid volume so far today? Zero. 

This happened yesterday. At breakfast I had been SO thrilled to see Jake eat a few bites of food. Then he threw/gagged it up all over. I cleaned us up, put our food away, and was in tears as we walked hand in hand through a (this place is HUGE!!!!) lobby en route to the on site pharmacy to drop off his scrips that we have to take home. I felt a tap on my shoulder and this big burly man handed me this awesome Mickey Mouse balloon, saying "This is for your son. Today's my birthday and the guys at work were teasing me by getting me this ~ I want your little guy to have it". SOB. I literally started sobbing in the middle of the lobby (in my pajamas, and, yes, my ugg slippers). When you are living in a hospital crib fashion becomes very secondary.

It was a bad night last night. We got new roommates. They are loud horrible people. Okay, they are nice, but they are effing LOUD!!!!!!!! Do we need to be yelling out the wheel of fortune answers at 10:30 PM? Mama rage was bubbling to the surface. Found out this Am that the mom of the patient next door is also a stage mom! As Jake slept she stood here telling me for 15 minutes how her daughter was one of the kids on the Disney show. In fact, the ONLY kid to be in the intro segment of BOTH disney shows. She might as well have been speaking in mandarin ~ not only did I not care, but my baby son was SLEEPING by my side. People.

Anyway, about the bad night. In addition to the traveling circus next to me, Jake spiked a fever of 102 out of nowhere. He was sweaty, I was sweaty, he has started throwing punches when we come at him with medicine, so we are all covered in sticky medicine.....all in all, a mess. Fever is not good. Low grade is fine and to be expected but 102 is higher than they want. He is now getting a dose of steriod in his IV to try to reduce the swelling in his throat to make swallowing possible (he doesn't even swallow his own saliva, he just drools all day. I change his PJ's 10 times a day). We also just went for a chest X-ray to check for pneumonia. We are also giving him a dose of morphene to try to get him comfortable enough to where he might be able to keep some food down.

I'm so tired. I'm so uncomfortable (this crib just doesn't cut it night after night), I'm really anxious. Talking on the phone is hard as we have a roommate and Jake is sleeping a lot. Texting is easier, but I Feel inundated, like I can't keep everyone updated without ignoring Jake and being on my phone all day. He is snoring here by my side ~ Pulse ox at 92, IV filling him with steriod. When that is done, onto the antibiotic (we are just starting this because of the fever, he hasn't been on one to date), THEN the morphene. I'm envisioning a LONG nap for us both over the next several hours.

So, thats where we are.

OH! The other amazing thing! Jake gets free meals as a patient. I have to pay for mine. To try to have an excursion/get him walking we generally go down to the beautiful cafeteria for meals. I have to bring a food voucher for him that I get at the nurses station so his meal is free. This morning, after our no good terrible night, I forgot to pick up his voucher in my desperation for coffee. I got to the cash register and realized I didn't have his voucher. Keep in mind he is 2, in hospital PJ's, with a no no on one arm and bandages from old IV's on the other. I say with tears in my eyes, I'm so sorry I forgot his voucher, is there any way you can call upstairs? (its a long walk). She calls her supervisor over, I tell her the same thing, starting to actually cry at this point.

A woman in her 50's walks over and presses $10 into my hand. "Here, she says. Take this". I say "No, its okay, I have some money I just can't stand the thought of paying for his meal when it should be free/I have a voucher". Then I start sobbing. She refused to take it back. Then she told the woman at the counter ~ "You know me Shirley, if that isn't enough let her through and I will give you whatever the difference is tomorrow."

I'm crying again just thinking about it. When you are tired, and worried, and a little beaten down, and your body hurts from sleeping in a crib and you have been eating nothing but junk........the kindness of a total stranger can almost be too much to bear. Sweet woman, whoever you were ~ thank you for affirming my faith in human kind. Thank you for making a moment of my day seem not just bearable, but joyous.

People get a bad rap. There is still so much love and goodness in the world.