The last 2 1/2 days

Ok. Whew!

So, we transferred Miss Taryn to UCLA Mattel Children’s Hospital. Wednesday when we sat down with Dr. E. we talked about why are we or aren’t we transferring Taryn to another hospital. He called another Dr. @ UCLA and spoke to him about Taryn not being able to saturate appropriately. Taryn has a lung disease called BPD, which also causes Pulmonary Hypertension, and this particular Dr. Specializes in it. He felt she could benefit from Nitric Oxide. (Its not nitrous, the “laughing gas” they give you at the dentist.). It helps dilate the blood vessels so that the heart and lungs can do their job better and oxygenate her. Los Robles doesn’t have this gas in their facility so that is why we transferred her.

The UCLA transfer team was called, and when they walked in, all 5 of them…it was OVERWHELMING! There were 2 EMTs, a respiratory therapist, and nurse, and a doctor. I could not stop crying. I was afraid because they only transfer really sick babies, and that meant Taryn was REALLY sick. And! She is OUR really sick baby. They were taking Taryn away from her home. They were moving her soo far away from our home. She was going to a place with 426558758976863212325588988 nurses, Dr.’s and RT’s. Yet, I was a bit relieved with the hope of something new. Something new that could help her get past this plateau.

They transferred her by ambulance, since the weather wasn’t good enough to fly the Helicopter. Praise the Lord, we drove 70 the whole way with zero traffic. We arrived at UCLA around 7:15pm We hung out in the waiting room for about an hour and a half until they brought us back to see her. A nurse walked us through the rules for the NICU and how to scrub in and then showed us where Taryn will be staying. She resides in Pod 4 Bed 15. It took them till about 1am to get her settled and stable. We decided to leave at that point and stayed over night at my parents. (they live in the valley only 20 min away)

This hospital is huge and not at all a warm and fuzzy place. The fee for parking is crazy ridiculous expensive. They charge $11 a day, and you can buy a pass for 25 days for $100 but it’s calendar days. So if you skip a day of visiting you are still paying for that day and it’s counted as it has been used. It is completely unfair and inappropriate to charge us poor parents of kids who’s lives are dependent upon being there. It is just not right. And God for bid we can’t just take one car down there because you know, Ben has to work and everything…yup that’s $22 whole dollars to visit our supper sick baby who wouldn’t be able to survive without the help of a NICU! I mean charge a visitor, but give the parents of the patient a break!!! But, I digress.

Poor Ben of course had to deal with work on Thursday and when I got up I went over to the hospital. I spoke to her nurse while I was getting ready and she had a very nice, upbeat, sweet, confident voice. I told her Taryn’s primary Nurse, Patricia would love to talk to her and fill her in. She said she was all about that and would call her. AND, she did. But not because I was making her, but because she truly wanted to know the best way to care for our baby. When I met Taryn’s nurse, Danielle she was very warm and sweet and filled me in on how Taryn’s night was and how she was doing currently. By the end of her shift she asked me if I would be alright with her being Taryn’s primary while she is there. I had prayed about the nurses taking care of Taryn, I had prayed that God would pick her primaries for us. I didn’t expect to meet one of them the first day she was there. But God is good and he provides.

During the middle of the night on Thursday, her sat (saturation) dropped pretty low after they tried to stop the paralytic, (this keeps her body calm so that all the medicine can work better, and when they have to give her care it decreases her sensitivity to it) so they had to manually bag her to bring her sat back up to the low 80’s. She remained stable again till about noon on Friday when her sat dropped again and they had to manually bag her, this time they gave her Ativan which also helped her to relax and her sat came back up. When we left @ around 6 her sat was in the low 90’s.

We spoke with a few Dr.s on Friday and the Neonate Dr. The plan of care right now is touch her as little as possible to let her calm down and allow her body to fight the infection she has. They did mention that when babies have to have the laser eye surgery they do notice that it sets many of them back and their health declines for a few days. So between the infection and the laser surgery, she was hit hard and it’s taking some extra time for her to recover.

She is on antibiotics for the infection, pain med, a med to calm her, a med to stop her from moving her body around, a med to help lower her blood pressure, a diarrhetic to help remove fluid buildup In her body, she’s on an oral med to help treat the pulmonary hypertension, and she received a blood transfusion on Thursday to help give her body a boost, and breathing treatments to help her lungs oxygenate better. LOTS going on and I am sure I left out some things.

She is still very critical and goes from periods of stability to periods of instability. We need her to feel better and get back to a constant stable. PLEASE continue to pray for our little girl, please. This lung disease is a long process of healing, and we need constant prayers of strength and healing for her. She can get better, but it is a long constant road of these ups and downs.

Ben and I are hanging in there. We are figuring out how to rebalance our life with her so far away. We are clinging to each other. But, the stress is taking it’s toll emotionally, physically, and mentally. It is hard to keep it together. So, please keep us in your prayers as well, we need lots of strength and peace right now.

Thank you


2 Replies to “The last 2 1/2 days”

  1. “Whew!” is right! My word, what an odyssey! Glad to know she is getting acclimated… You have our prayers; in fact, after I read your update, Mark and I prayed right away… May the Lord keep all of you safe, and sound ~ mentally, physically, emotionally and spiritually. Get some rest and take care of yourselves. Love from all the Perry/Spiro’s.




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