Monday, February 21, 2011

Lucy's Struggle

Tony brought a cold home from his latest trip to California, surprise surprise and we all got it.

Monday the 13th: Spencer & Lucy developed fevers and weren't feeling so hot, so I took them to the doctor. Lo & behold, Spencer had pneumonia for the 9th time. Ugh. Antibiotics. Doc also thought Lu might have a sinus infection since she had a fever, but no ear infection, lung infection, etc. Antibiotics.

Tuesday the 14th: Lu woke up at 7am and puked up everything she had nursed that night. She refused to nurse for nearly 12 hours. Since she doesn't really dig the solid foods, I was starting to worry since nursing is her main source of nutrients. That night she nursed maybe once.

Wednesday the 15th: All morning Lu decided she had given up the boob. She now had raspy breathing and looked like she was working pretty hard at it. I decided it was time to go back to the doctor. If she had a bacterial infection and was on antibiotics for 48 hours, she should be feeling better by now. We got to the doc and he gave her a breathing treatment because she sounded wheezy. After the treatment he checked her saturation levels (how much oxygen is actually being absorbed by the body) and they were 89%. He said she had a pretty bad case of bronchiolitis and he sent us straight to Salem Hospital to have her admitted. After much craziness... juggling 3 kids, waiting for Tony to get home from work in Hillsboro, pack me a bag and meet us there... She was put on a liter of oxygen (the tubes through her nose) and given an albuterol breathing treatment. Tony came and took the kids home after my mom & brother came and sat with me while we waited. As soon as he left they decided she was wickedly dehydrated and started to try and start an IV. After 4 failed attempts, they finally found one in the crook of her elbow.

Meltdown #1 for Mama.

I stayed with her all night as they gave her an epinephrine breathing treatment every 2 hours because she wasn't responding to albuterol.

Thursday the 16th: No change.

Friday the 17th: Lucy worked down to nearly no oxygen and epinephrine every 4 hours by night time. They started her on intravenous steroids in case there was an underlying asthma factor.

Saturday the 18th: 3 am, I wake up to find 3 nurses and the respiratory therapist in our room hovering over Lucy. I'm slightly drugged (took some benadryl earlier because I find it extremely hard to sleep in hospitals), and the nurse in charge starts talking to me in a rather, "I'm trying to stay calm" voice. She tells me that Lucy is having a really hard time breathing. The amount of breaths a baby her age should take per minute is around 40-50. She kept jumping up to 85 and have to work really hard to keep up. They were giving her breathing treatments every hour and her oxygen was turned back up to 1.75 liters. The vein where her IV was had collapsed and they were trying to find another site. They finally found a vein in her foot and got an IV running. After 5 minutes, it too collapsed. They called in the NICU nurses to come find a new vein since they couldn't. They finally found one and inserted an IV in her head.

Meltdown #2 for Mama.

The nurse said if she didn't turn around soon they would have to send us to Portland because she was working too hard and was so tired that she might just give up and stop breathing and they didn't have what she needed if that were to happen.

Meltdown #3 for Mama.

I called Tony at 4am to come in because I was having a hard time holding it together. My amazing neighbor stayed at our house so he could come in. Meanwhile, they called the doctor and she decided to have her do 3 hour long breathing treatments of albuterol since the epinephrine was no longer working for her. By the time she was done her heart rate was over 200 beats per minute and she was shaking from all of the drugs in her system. They gave her another dose of steroids. She finally relaxed and it looked like the worst was over. They continued breathing treatments every hour throughout the day and into the night.

Sunday: 3 am. After maybe an hour of sleep, I wake up to find the charge nurse rocking my baby and giving her a breathing treatment. (Not normal since it's usually the RT that does it and the treatments are only 5-10 minutes long). She says she's worried. Her saturation levels dropped again and she was back on albuterol and the doctor said to do it straight for 2 hours to try and open up her airways. Her breathing is shallow and 84 breathes per minute.

Mama meltdown #4

2 respiratory therapists and my nurse all tell me that they can no longer take care of Lu in the way she needs and that she should go to Portland. The doctor comes in later that morning and we all decide it's in her best interest to get her transferred up to Doernbechers.

Mama meltdown #5

My big brother comes up and sits with me & while Tony heads home to pack some bags and we wait for the ambulance. "This is what you want" he tells me. That she is going somewhere where she'll get the best possible care. It takes some time, but he convinces me this is a very good thing.

The Panda transport team arrives later that afternoon and we make our way up to OHSU.

After getting hooked back up to all of her monitors, oxygen and settling in, a team of 2 doctors, 2 med students, an RT and a nurse came and assessed Lu. She received one albuterol treatment and they decided since she didn't really respond to it, that they weren't going to continue treating her with it. They took her off oxygen to see how she would respond. The nurses, RTs and doctors continued checking on her throughout the night. Her sats dropped to 82 at one point, but came back up after upping her oxygen to 1 liter. By the morning she had worked her way back down to .25 liters. But never once did her heart rate go over 130. Never once did her breathing rate go over 55.

Today: This morning 3 doctors, 6 med students, a nurse, the RT, and the dietician all came in and assessed Lucy. I felt so at ease. I felt like she was special. Important. That they were here to do everything they could to take care of my baby girl. They've been here all day. The entire time we were in Salem, the nurses had to call the doctor to figure out what to do. Whereas here, there's a doctor available at the hospital, all the time. Very reassuring.

Since being transferred to Doernbechers Lucy has done so much better. After speaking with all of the doctors, nurses, and RTs, they all agreed she should have been transferred here days ago because she was obviously being overdosed and bombarded with drugs that were working against her rather than with her. She's improving so much faster and has even had a few moments where she actually wanted to play!

As of right now she is no longer on oxygen or any breathing treatments! She's still pretty wheezy, but everything else is improving. She currently has a feeding tube placed down her nose where she's being "fed" Mama's milk. The more nutrition she gets, the better she seems to feel. I feel so much more at ease here. It feels less like a crazy stressful situation where people are running around with their heads cut off and more like people are trying to figure out the source of the problem and not just treating the symptoms with drugs that aren't working.

I want to thank each and every one of you for all of your prayers, offers to help, food, coffee, & company. God is good and I have the most amazing friends and family.


Lyssy said...

so happy to hear Lucy is improving! :) stay strong, mama.

Dee said...

Wow, Carrie this made me cry. My heart just aches for you and your sweet little Lucy - We will continue to keep you all in our prayers - So glad to hear that she is doing better now.

k. crow said...

So glad to hear she is getting the treatments she needs to feel better. Xoxo to the ever-intrepid Macs & Joneses! Seeing so many people lift you up in support has made me feel like the world is a better place. I am thinking of you. Get well, Ms. Lulu!

lapetitevie said...

Carrie, I can't stop crying! I don't know how you have dealt with so much worry over the past week over your littlest love. I have no words for how I feel about Lucy's improvement. I'm thinking about you all constantly and hope beyond hope that Lucy continues to strengthen. I'm sure she will now that she is getting such great care and your milk.
Big hugs to you all.

Anonymous said...

So good to hear from you today Carrie and appreciate the blog update. I will say a prayer for your family and it was pleasant to read how things are progressing in Portland. Love, Heather

Brittanie said...

Thinking of your little sweetie!

Crystal said...

You're doing such a great job of documenting everything! You're awesome.

Missy said...

Hey Lady. Glad to hear she is doing better. My brother-in-law Julien Laborde is a nurse up there. He is a good guy so ask for him if you need help. I'm thinking about you.

Rachel said...

Carrie, I feel so bad that you and Tony are going through this. You are so strong. I don't have a perfect relationship with God, but I prayed so hard for you all yesterday and since i've only prayed this hard once before I imagine that he took it seriously. I did it for Lucy first and foremost and for all the Joneses, but also for me. Anytime I've had a really bad day I look at your pictures because it makes me happy to see such an amazing and loving family. You are great people and great parents and I can see why everyone who lives near you loves you. You guys perk me up all the time and you don't even know it. I am eternally grateful and wish I could be there to help. If there is anything that you need, now or later just ask. You dont deserve this, but it will get better because Lucy is strong like her mama. Wishing you
all well and praying up a storm!

Apothecary Inn said...

Oh thank GOODNESS! I am so SO relieved to her that Lucy is doing better (and so are you)!!! Stay strong!

alansherryjones said...

Tony and Carrie, Happy report again today your blog is great and LuLu will love it when she gets older. The love and support from your friends just shows how much you are all loved and the power of prayer. XXOO Dad and Sherry

Dayle said...

Hi I'm Dayle, Amy Price's sister in law...I am here at OHSU having a bone marrow transplant and I am praying for your family and Lucy. Know that there is someone here on campus praying for you. God is great!

Anonymous said...

We have never met and probably never will. You have an amazing friend soliciting prayers for you and your family! You are amazingly strong Mama and I will continue to pray for you, Lu, and the entire family!

jeff said...

Carrie, We've been praying for Lucy in our small group (which has several of the people who do the nursery thing at MOPS).... pretty firm slam on the competency (or lack thereof) of the people at Salem Hospital.... glad she's feeling better now that she's at OHSU.