^—-PJ all swollen up from her IVs, safe and sound back in NYC
We were able to get Piper back to Columbia, on Thursday. She arrived around 12:30 or so. It wasn’t a very smooth ride over. She had some blockage in her trache, and was having some bronchial spasms. She was generally in bad shape. When She arrived, the doctors worked on her for about 5 hours to get her stable. Part of this process included putting in a central line (which goes straight into her little heart), which was required so that they could safely give her the combination of medicine needed to stabilize her heart rate.
She has be be restrained, so that she doesn’t pull out her IVs or flip around in her bed. This drives her absolutely bonkers. That is a problem because every time that she started to gain consciousness, she would freak out and de-sat. So they have put her on a paralytic for now.
She is battling a super bad case of pneumonia. The only time that we have really ever seen her this sick, since she left the NICU, was in January of 2008, when she had to be put on the oscillating ventilation for a day.
She seemed to be moving in the right direction by the time that we finally decided to come home tonight. She was getting a blood transfusion, which should help with her saturation and with fighting the infection.
We have been so grateful to everyone who has called, texted, and left kind comments of support on FB and our blogs. We feel a lot of love and support. I’m sure that Piper must be feeling the positive vibes, as well.
^—Reagan on the phone with one of Piper’s nurses, in a different unit
Times like these remind me that we really are not the ones in control. It can be a pretty helpless feeling. It also amplifies the gratitude that we have for all of the knowledgeable and skilled people who show such compassion in our daughter and keen interest in her well being. When the transport guys from Columbia showed up today at St. Joes, to move Piper back, I was almost overcome with emotion to have someone there with Reagan and myself who has seen this whole journey of ours, basically from the beginning. It is so amazing how these people become as close as family. We have developed a very deep respect and trust from watching the way that they care for our little one that we love so much. There was also one of the PICU fellows who came along to make sure that Piper made the trip, ok.
We are hoping that her chest X-rays clear up soon, so that they can start scaling back all of the meds that she is currently requiring. Since her heart has been pretty stable for a few hours, they have already started cutting back the stuff that they were giving her for the blood pressure. Hopefully this trend will continue.
Again, we really can’t express enough gratitude for all of the kind words, positive thoughts, and prayers in Piper’s behalf.
Comments
12 responses to “PJ Update”
Reagan, Jake and Piper
I just want you to all know how much I love you!! I am thinking of you during this difficult time. Although I cannot totally relate to your situation, I hope you know that as a parent I understand the pain you must feel. Piper is a precious soul and you are both responsible for so much of that. Again, I love you all!! & my prayers are with you
Reagan & Jake,
I know I am one in a sea of a million, but I didnt want to go without letting you guys know that you are in my families thoughts and prayers. It makes me bawl to see your baby like this. My heart breaks for what you guys go through during these tough times.
You guys are amazing. That little Piper is as well! Thanks for taking the time to keep people that care for your sweet little family updated!
Sweet Sweet girl, we are praying for you and your family. You are all amazing strong people and we love you!
You are in my thoughts and prayers. Piper is a tough cookie and I hope she’s back to her spunky self soon.
Oh, this breaks my heart. All those machines for little Pip! But I’m so glad you’re sharing. We love Piper and love you guys. If you need a break, a bite, a nap, a laugh, a cry, anything while you’re at Columbia, we’re just around the corner.
I’ve been following everything that has been happening but I guess I wasn’t expecting things to get so bad so quickly. We love you guys and we’ll be praying that Piper recovers quickly! Let us know if we can be of help.
we are praying for you Piper! and your mom and dad too!
You guys are constantly in my thoughts. Everyday. Thank you for sharing all of it.
You guys are great examples of strength and courage.
No two people could be better parents for your bird.
We’re praying for you!!
I’ve been thinking of you and your little family Jake – You are all so strong, especially little Pip.
I’m so sorry this is happening to you, I wish I could make everything better. Lots of love for little PJ and her amazing and strong parents. *hugs*
we can’t believe it:( we miss our piper jane – bring her back once she’s doing better… we’re waiting with open arms! she’s in our prayers…
love, the Blythedale crew