Friday, July 18, 2008

DAY 12: JULY 18, 2008

The day went to hell very quickly. Michael went to be with Finnian last night and told the nurse that we expected to meet with the doctors this morning at 11:00 because we wanted to have him discharged. We made spur of the moment arrangments for the other kids so we could both be at the hospital this morning, and we took separate cars in case one of us needed to stay at the hospital and the other needed to go home to relieve friends who would be tending to the kids.

When I arrived in the NICU, Michael was already there. Shortly after, a woman from the lactation team came into Finn's room (not Mary) and started discussing his feeding issues with us. We are well aware that it takes work to get him to take breast or bottle at this point, but when effort and patience are demonstrated, he does very well. That's not just us saying that - every nurse has said that, as well as the feeding/developmental team that has evaluated him a number of times, and Mary, the LC who has worked with me. Everyone agrees that he takes feedings well if given the chance. And there is no question that he's tolerating the feeds well, meaning he's had no reflux or bowel or digestive issues.

She explained to us that they are concerned about the VOLUME of his feeds. They are concerned that he's not yet taking the VOLUME that they have arbitrarily decided that ALL babies of his size should be taking on a certain schedule. I told her we are perfectly willing to rent or buy a specially calibrated breastfeeding scale and to weigh him before and after each feeding at home. I told her we are willing to have a home health nurse come to our house every freaking day to assess him. I told her that I'm well aware that we have a road ahead of us to get him exclusively breastfed, and that in the meantime he's not going to starve, as I have enough breastmilk stored in my freezer now to last a couple of months probably - we can give him a bottle just as easily as the nurses in the NICU.

She said she didn't know where we could get such a scale to monitor him. Michael and I both told her that it was ridiculous to allow a SCALE to stand in the way of him coming home, and that we weren't going to accept that.

Then the "patient advocate," Dana, came to get us to meet with the attending physician, a young asian woman, I can't remember her name. The four of us met in a little conference room. The doctor explained to us that she wasn't "comfortable" releasing Finn today. She never was able to give us a clear explanation as to why she feels that he is better off in the hospital at this point. Everyone, including her (grudgingly), agrees that feeding will likely go better at home where we are relaxed, where Finn is not hooked up to all kinds of monitors and crap, where we won't be on a time schedule or time limit. But still, she just doesn't feel comfortable with releasing him. The meeting became very heated. I told her flat out that I was putting my foot down and demanding that he be discharged. She said she'd speak to the doctor in charge of the NICU. I asked her, "Why? So he can back up everything you've said?" The meeting ended. Michael and I went back to Finn's room and waited until our "patient advocate" came to get us again to meet with Dr. asian woman and Dr. Cleary, the head honcho.

We met in the same conference room: me, Michael, Dr. asian woma, Dr. Cleary, and Dana, our "patient advocate." Michael and I were on one side of the table, and all of them were on the other side. (I later told Dana, "You're supposed to be a patient advocate. You should be on our side of the table.") Dr. Cleary made the same arguments we had already heard. I told him that I've managed to feed and take care of 5 other children, so it's not as if I'm completely in the dark about how to care for Finnian. I told him we deserved an opportunity to take him home and take care of him. I told him that we had already proven ourselves to be vigilant parents just by the fact that we rushed him to the ER the day he was born as soon as we saw an issue, and that of course we would do the same again if he didn't do well with us at home. He was not going to budge. He actually mentioned something to the effect of our having 5 other kids would prevent us from devoting to Finn the time and care he needs. I shit you not. What an innappropriate, uncalled for, unfounded statement. But it gets better.

Yes, it gets better. He said that if we insisted on having him discharged today, it would be a matter for CPS to get involved in. CPS. Child Protective Services. When he made that threat, he slammed the door on any meaningful discussion. I couldn't even stay in the room, I felt claustrophobic suddenly, and I rushed out, and down to the first floor and outside and I felt like I couldn't breathe. That's what it came to.

I went outside and cried and made a couple of phone calls (one being to my former boss because other than Michael, he's the only civil attorney I know, even though I've been out of touch with him for a number of years, but he couldn't help me - not his area of expertise). I sat for a while and caught my breath and went back upstairs. Michael was still in the conference room with the other 3. I let myself in and looked Dr. Cleary right in the eye and called him a son of a bitch for threatening us with CPS.

I won't even bother to relay the rest of the conversation here. Basically, we lost. They refused to discharge our baby today. What they did agree to do is turn off his IV (he's been getting electrolytes and glucose via an IV in the middle of his chest this entire time, which they also used as proof that he's not ready to go home, but as Michael pointed out, he's only getting IV fluids because they're freaking giving him IV fluids) and see how he does taking nutrition 100% by mouth. They agreed to increase his volume more quickly than they otherwise would have. They say that if he does well this way over the next 12 - 18 hours, it is feasible that they might feel comfortable releasing him as early as tomorrow. He still could not answer the question I asked over and over: "Why can't we do this very same thing at home?"

I should hold on to this . . . that he may be home tomorrow. But it's not enough. Everything they're doing in the hospital at this point, we could be doing at home, and we could be doing it better. And they won't even give us the opportunity to try.

9 comments:

Jodi said...

Oh, Lisa. This crap is the very last thing you need. As awful and terrible as it is to have to fight to get your child home, I have to believe that it will result in Finn coming home much sooner than if you just passively waited for them to release him. But, there's a special place in hell for anyone who would threaten you with CP-freakin'S.

Jodi said...

P.S. What was the doctor's name from "The Birth House"? This is all reminding me too much of "the doctor's always right" philosophy from that book.

lilac0422 said...

I am so angry at your hospital. What they are doing is WRONG on every level!! They do not own your child. There aren't words to express my rage. What you are going through is everything that is wrong with the medical system in America. It is the very reason that I do not trust ANYONE in the healthcare field. I don't know how they can sleep at night after threatening you with CPS. That is the ultimate slap in the face to wonderful, loving and very capable parents. How dare they judge you without even knowing you!! What are they going to do if you try to sign Finn out against medical advice, throw you up against the wall and cuff you!! Give me an effing break!!!!!!

Crystal said...

I was worried that they would threaten you with Child Protective Services if you insisted on taking Finn home. A hospital did that to my brother when he took his newborn baby back to the hospital with a slight fever. The doctors decided that the baby needed a SPINAL TAP to rule out meningitis! When my brother, a medical student and doctor-to-be himself, objected, they threatened to call CPS. My brother had to consent to the spinal tap; the results were negative and the baby was perfectly fine. The doctors subjected my nephew to that for nothing!

We have a perception that doctors are somehow God-like and their every word must be hung onto and followed unquestionably. However, they are all too human just like the rest of us.

However, if CPS does take over, you will no longer have custody of your own child. Even when he is released from the hospital, he will go into foster care, not home to you until his fate is decided by a judge. You do not want to have CPS involved.

Hang in there. This will be over soon.

Heidi said...

Oh, good lord! what a giant crock of shit! i'm so sorry that the docs at CHOC are doing this to you. oh, it gets me all hot under the collar. i'm pissed off on your behalf.

i'm glad that finn has you and your husband to be such strong advocates for him. i'm sorry that it's so hard.

heidi

Karly said...

What awful, crappy treatment you and Finn are receiving. I hope you break him out today.

My DD didn't want to eat at first and they were reluctant to send us home as well...my pediatrician stepped in. Maybe an advocate like that would help you as well...so the hospital feels like they are releasing you to the ped's care. Just a thought.

glathreea said...

Oh Lisa,
I cannot believe the way you were treated by the doctors:( I am so angry for you! I cannot believe they threatened you with CPS! That is beyond terrible. What terrible bullying they are doing to you. I think they are just trying to cover their own ass and got all their ducks in a row and their t's crossed and i's dotted before they release him.
The last thing you need is CPS involved in your lives. I love how he basically said because you have a large family you wouldn't be able to adequately take care of Finn.
Thinking of you all. (((HUGS)))
Alyson from PO

keldars-rose said...

Ohhh I am all sorts of enraged. How DARE they treat you guys like that, and how dare they gang up on you as they did, because that's all that was. Them, against you. How absolutley, 100% UNacceptable.

I would, without a doubt, be writting them a letter to let them know how you feel & how wrong their behavior was. NO amount of schooling will EVER give a doctor, or any kind of "professional" the instinct of a mama and of a parent. Never. Yes, they may know how to treat an ill baby or one who needs some extra attention, they may know pathology & how it applies, but never, will they understand what a mother knows & I think her input, as well as the fathers should always, ALWAYS come into play. It's okay to disagree, it's okay to have a converstaion, it is never okay to threaten in a situation where the parents truly care & have shown their ability to care for their children. How they treated you and the disregard they showed, oh I just don't have the words.

I think I'd be contacting your local LLL leaders, get their in put, I'd also contact your pediatritian and get his input. Based on their reaction (should it be positive) I'd include that in your letter & hopefully they'll support you in that. I am so sorry that you and your husband have had to go through this, as if everything else your dealing with isn't upsetting enough.

~chimmy~

Carla said...

I shook with rage when reading this; calling him a SOB was too kind in my mind. You shall persevere, Mama!