The Children’s Hospital’s Neonatology unit where we live is ranked 5th in the nation. So, basically, one can think that they are pretty darned good. With that being said, I am >thisclose< to filing a complaint against them because I do not believe, in my heart, that G has received consistently competent care from them.

A recap…

1. Seizures – I said from week one that  I thought she was having seizures. I pushed, and pushed, and pushed on this. They did a head ultrasound – said nothing was abnormal.They did a sleep study, and from the PARTIAL EEG done during the sleep study, said that there was no sign of seizure activity.  At 6 weeks old, G started having ‘classic’ seizures (Ie: rhythmic spasming).

They later outright said that you need a full EEG to detect seizure activity… this was after reassuring me that the partial EEG would have picked stuff up.

2. G demonstrated an inability to tolerate formula early on. They tried her on similac and isomil. During rounds, while I was there, they were talking about G’s weight gain, and the doctor ordered her to be put on Sim powder (aka Similac Formula). Between the doctor and all the nurses that do rounds with the doctors, -I- was the one who had to speak up and remind them that G had already shown she could not handle those formulas, and that we’d already tried them. I was the one who directed them towards the alimentum.

3. I recently went in and during the course of my normal conversation with the nurse was told that they were no longer going to do blood gasses on G. I freaked out. “What do you mean? This is stupid. This is effin’ stupid. You’re nuts. I will FIGHT you on this. OF COURSE you’re going to do blood gasses on her. Have you guys went around the freaking bend?” … The nurse asks me if I want to talk to the NP. I said yes, of course. So she goes to get the NP, then comes back a minute later apologizing. She said that she’d been given the wrong information from the first shift nurse and that the order wasn’t in the system yet but they were going to continue to do blood gasses. 

It scares me to think what might have happened if I hadn’t been there to raise a fuss and bring attention to the fact that something wasn’t right.

4. I recently asked one of her nurses for her CO2 levels, in writing, so that I could have a concrete reference for how they were doing. The nurse proceeded to write down all of her gas numbers, without labeling them, and then pointed out which ones her CO2 numbers were. She pointed out the WRONG ones. She said they were 32, 31, 30. They were actually 54, 46, 46. BIG, HUGE difference there. 

5. I had been informed by Dr. Snyder that our plan of attack with G was that if we got a bad blood gas from her that we would wait one hour, and take another blood gas. Then if that one was still bad, we would act on it and put her back on Si-pap. I was also told by a nurse that taking a blood gas while an infant is worked up is not a good thing to do because her CO2 levels are naturally going to be elevated at that particular time…

They took a blood gas while G was worked up. They immediately put her on Si-Pap. They took another blood gas an hour later after putting her on Si-Pap and her levels had dropped dramatically. … G’s CO2 levels, if naturally elevated, do NOT come down that quickly.

6. ENT consulted on G yesterday. I was told at that time that they thought we should proceed with tracheotomy because G didn’t have issues maintaining her sats. Her issues were with her CO2 levels only.  … On cannula, with low CO2 levels (for George at least), she needed 3 litres at 45 percent oxygen to maintain her sats. G also demonstrated an issue with maintaining her sats BEFORE she got rhinovirus, BEFORE her CO2 levels started going out of control. So for this doctor, who has never seen G before, to look me in the eye and tell me that she doesn’t have problem maintaining her sats?…….

Prior to rhinovirus, G required 0.2 litres of oxygen at just above 21 percent to maintain sats. After Rhinovirus, G’s CO2 levels are hard to control, and on cannula she needs at least 3 litres at 45 percent. 

Halfway through this post, the Care Coordinator called me. I told her exactly what I was feeling. I stated that if I could not even trust that I was being given the right numbers in regards to G’s CO2 levels, how could I possibly expect to sit down with the doctors and discuss G’s prognosis and quality of life? They can’t even give me the right freaking numbers from a report!

I pointed out several recent issues that I’ve had. 

She agreed that I had some very valid points and is organizing a care conference immediately (so by Thursday/Friday) so that we can get everything taken care of and my concerns addressed.

I told her that I was going to get G’s records and send them to Cleveland Clinic. She was like “Oh well lets do this care conference before you do anything drastic!” … We’re doing the care conference. I’m still sending G’s records to the Cleveland Clinic.

I told her that I felt like I needed to be at the hospital 24/7 at this point just to make sure that my child was receiving appropriate care. That I could no longer trust the neonatologists (have no issue with the pulmonology or PH specialists by the way) or nurses to take care of G.  That while I thought they did a fantastic job taking care of L, they have absolutely and completely dropped the ball on multiple occasions with G.

So basically I just told Children’s Hospital that they were doing a shitty job with my daughter, and now I get to sit back and get buried in the fallout. Yay. 

I’m tired. I’m so freaking tired. I feel like there’s nothing or no one that I can depend upon. That I can truly lean on. My boyfriend just doesn’t know how to handle the situation.  I have good friends who try, but they live hundreds of miles away. That all I can do is do all of this myself. And I’ve already broken once already under the strain. Luckily I managed to put the pieces back together and keep plodding on…

But what happens when I break again? Will I be able to put myself together one more time?

Will I be able to keep fighting for G, and for L? or will I end up in a padded room or dead?

….and how was YOUR weekend? LOL!

  1. Sharon Picard says:

    {{{HUGS}}} and love to you, G, L & K…

  2. you have been in my thoughts a lot lately. I have been thinking of baby G and you and trying to send lots of love.

  3. Jilly says:

    Dianna, I am so glad your typed all this out. One, so I can know what you’re dealing with. I have had several clients struggle with children’s hospital unexpectedly bc they are touted as the best. Its true that they are not perfect and do fail big time. I am relieved that Georg has you to advocate for her thou it would be so helpful if the people working with her would do their jobs thoroughly, so you don’t have the stress of doing it for them. I’m also glad you typed it out because good grief you can’t carry all that madness on your own! You are amazing even if you don’t always feel it. I pray this care conference goes well but if not I pray the Cleveland Clinic is an answer to prayer. I know many families that have transferred care of their child to the CC with positive results. You got their attention momma. If they fault you for that then they have failed 100% at their jobs.

  4. Albertine says:

    I concur with what Jilly has said. The staff you have been dealing with sound almost incompetent, which is terrifying to think about considering all the lives they have in their hands. I am so proud of you for sticking up for G and yourself. You are an amazing woman and an even more amazing mother.

  5. Shelly Good says:

    We aren’t in contact but I’m a MM rallying for you and your family with so many others. You are a remarkable mother and your girls are so lucky that you are theirs. Sending positivity, love and strength to you.

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