Friday night was one full of choking on the tube down her throat, trying to pull it out, putting restraints on her, and more sedation. Thanks to a daddy who wasn’t going to allow the logistics of “rounds” get in the way, Charlotte was extubated early Saturday morning. She had a rough morning of a liquid diet, more respiratory therapy, and fighting high CO2 levels. Sweet girl was very down or depressed.
Sunday was pretty uneventful. We pleaded with Charlotte to eat. She has consistently been losing weight and ultimately we were going to be forced to place a feeding tube.
Throughout this almost 3 year journey, Charlotte has missed out on a lot. This would be the first Easter we would be celebrating, the same way we did before our life changed. “She didn’t want to miss Easter”. We spoke of what Easter truly was and found some crafts to do to preoccupy her hurt.
Monday, the hospital was in full swing. Charlotte was still not loving her mask and struggling to wear it all night. The hopes of the bipap is to get her CO2 levels down. We also learned that nothing had grown back on the cultures and bronchoscopy samples they pulled.
Charlotte did test positive for RSV and is in isolation because of it. As many of you who have followed our journey know, isolation means being confined to your room in hopes of keeping other immune compromised children safe. This is her first time to have RSV. It’s crazy but she has zero symptoms! I am extremely grateful but completely clueless how that works.
Each day Charlotte has slowly gotten better. Around Wednesday, she started eating a little more and occasionally smiling. She is tolerating her mask better and on Friday her CO2 was 49! The lowest it’s been since we have been here! It’s not ideal, but it’s much better. Charlottes nostrils aren’t flaring and gasping for air as much either.
The pathologist have been going over all of Charlottes samples and on Thursday they noticed she is showing signs of PJP (Pneumocystis jiroveci Pneumonia ) in her blood. She is being treated for this with a 21 day intense antibiotic round. We are hoping to see some change. After this is complete we have a couple of other plans to try, which include antibiotics and IV steroids. While she didn’t have any infections grow back in the cultures, she had a lot of inflammation in her lung. The antibiotics they are wanting to try works as an anti inflammatory.
I have talked about Charlottes drastic weight loss. Even in the hospital she has lost more. The conversations of feeding tubes has popped up daily. Once she is healthy enough to be put under general anesthesia a G tube will be placed in her stomach. For now she has an NG tube that goes into her nose down to her stomach.
We have managed to avoid a feeding tube this whole time. When I had the talk with Charlotte, she was devastated. This was another violation to our sweet girl. The first nurse measured too short and Charlotte couldn’t stop gagging. Another nurse placed a second one and it seemed just right. She still gagged and coughed but eventually that went away. The feed started and ran through the night. She slept with her bipap on and for the first night slept for 7 hours straight!!
Friday morning, once her feed was finished, we learned her tube was clogged. They tried EVERYTHING with zero success and I had to break the news to Charlotte that we would have to pull it out and try again. Two nurses came in and Charlotte asked if she could pull it. Well, she did it all on her own and surprised each one of us in the room! Amazing! One of the RNs said that made his week, that he hadn’t seen a kid do that. She dreaded having it replaced but did much better and is handling it well.
Its 5 am as I write this and I’m watching my precious girl sleep as I have many times. Unfortunately she is hooked up to many machines and it’s hard to actually see her face due to the mask that’s helping her breathe. Through all of this I am grateful to see her chest move, to see and hear her breathing. I am reminded that she is still here, fighting as she has for so long. I am grateful.
We have a long road ahead of us but I am confident that we are in the right place. Since November, Charlotte has been struggling. We have seen 3 different teams of doctors in 3 different states without a solution. We have been here a week and they have addressed each issue and are treating her!! Traveling is HARD, not being in our home, having our family split up is HARD. Life is HARD but we are getting through it. I’m still believing in her miracle and looking forward to the day Charlotte is able to play and run around.
I think about the pain it is to watch my innocent baby girl suffer. All she has endured and the feeling of what I would do to trade places. I wish she could enjoy her childhood that she is constantly robbed of.
Easter was a reminder for me, of the pain and suffering Jesus endured. I can’t imagine being his father who had to watch. I am grateful for the ultimate sacrifice so that we can live an eternal life that is free of pain and hurt.
I will definitely try to keep each of you updated and I appreciate all of the messages and cards. We feel the love and support and it helps us get through this battle. I post little updates on Charlottes Facebook page.
Please pray for:
- continued progress
- normalized CO2
- weight gain
- the antibiotics to make breathing easier
- clarity for the doctors
- peace for Charlotte
- Charlottes miracle
Praising God for:
- a team who is determined to help
- the fight in Charlotte
- the support we have received
- Charlottes miracle
“Trust in the LORD with all your heart And do not lean on your own understanding. In all your ways acknowledge Him, And He will make your paths straight.”
Proverbs 3:5-6 NASB
“O Lord, thou art my God; I will exalt thee, I will praise thy name; for thou hast done wonderful things; thy counsels of old are faithfulness and truth.”
Isaiah 25:1 KJV