Another LONG night•
Last night Erika’s blood tests showed her lungs weren’t fully expanding, therefore gases aren’t exchanging as well. They put her on a bipap machine (she’s still breathing on her own) to make it easier for her to breathe and put more pressure into her lungs for full expansion. The bipap helped her get the extra pressure she needed as well as to exhale the CO2. She doesn't like it though and still couldn’t sleep at all.
She got off the bipap this morning and they are keeping her on the high dose oxygen which seems to help. She has already been able to sit up twice today and her oxygen saturation continues to look good while doing this which is reassuring.
Another struggle they had last night was increased blood pressure and heart rate. They did an EKG to make sure her heart wasn’t in a funky rhythm. It wasn't, so they will gave her something to slow down her heart a little and get her blood pressure down a bit. This worked well, and today she has continued to have good vital signs.
They are still trying to figure out why this happened last night as well as the night before. We are thankful she didn’t have to be intubated a third time and also that she seems to be doing better this morning. Because they are still uncertain they will continue to move forward cautiously today. She isn’t allowed to eat anything and they will have to put a tube through her nose and into her stomach which she is NOT happy about. Her negotiation tactics aren’t going to work for this one though, as they want to be extra careful that she doesn’t aspirate again.
Her pain has been a little more manageable and the doctors feel they may need to keep it where it is today so she doesn’t get too sleepy from the pain medications. They don’t want her to sleep too much today because they don’t want her to get her days and nights mixed up which can cause delirium but they are scheduling in naps.
She is such a warrior and is always trying so hard. Hard to breathe right, say the right things, trying harder to fall asleep because that’s what she’s supposed to do.
Also, I FINALLY have the link for COTA (Children’s Organ Transplant Association)! ????????
In addition to the emotional and physical stress she is undergoing, there is another aspect that is extremely stressful for both she and her caregivers. The financial aspect of this is tremendous and a double lung transplant can cost close to $1,000,000 (one million dollars) when it’s all said and done. My mom had to leave her job and Hunter has taken time off of work to be in Seattle with her as long as possible. In addition to the medical expenses, they will have to live in Seattle for 3 months after release from the hospital.
Many people have asked what they can do to help, and this would be huge. In attempt to relieve some of the burden for her if we can.
As always, your continued love, support, prayers and positive vibes are so greatly appreciated. I know Erika appreciates them and I can’t even wait to knock her hospital issued slipper socks off when she sees all the love.