We made it to April. Almost a month in the PICU. At this point I stopped documenting regularly. We were exhausted, we were scared, we were frustrated, and we just wanted our girl back. Anyone who has spent anytime in a hospital knows you don’t get any rest. And David or I were always there. We took turns staying over but many nights we both stayed if we felt like things were not going well. We got no sleep. We barely ate. The conditions in the PICU were terrible. People didn’t clean up after themselves. Bathrooms and kitchen were dirty and you couldn’t even get coffee without leaving the floor as the keurig was broken. We were basically living there and it was just more shit we had to deal with. We were all hanging on by a thread. There was no privacy, doctors and other team members constantly in the room, no where to go to be alone but still be nearby. And in the ICU you hear everyone’s grief and fear. You hear the cries, the wailing, the devastation. It’s too much. Simply too much.
Ariella’s spirts continued to drop. She was a shell of the spunky, sassy, goofy girl that first entered the hospital. She literally asked by writing “what if I die?” and all I could think of was that I would never hear her voice again or properly hug her. Ariella also communicated by typing notes on her notes app. I still have them. I won’t share them word for word. They are excruciating to read. But here is the gist. She was again begging for water or milk, begging to get out of the PICU, asking for dates when she could drink, saying they keep lying to her. She said she wanted to give up. They better have a date for her when she could have a drink or she would really give up. She said she felt pointless. She said she wanted to be sedated, that she didn’t see a point anymore. She said she didn’t want to live anymore. That it was pointless and too hard. That she gives up, that “it’s not like anything is doing anything for me right now anyways. It could be weeks before I drink something now.”
Things just kept getting worse. Ariella’s anxiety was out of control. She had some delirium from meds and just being in the ICU. She would pull at her tubes and was confused a lot of the time. She kept getting infections but lines had to be removed and replaced and new lines added. They were running out of veins in which to put lines. She had them in both arms and both legs. They had to use ultrasound to place new lines. They still couldn’t wean the amount of pressure (PEEP: positive end-expiratory pressure) she was on to keep her airways open. And things went from bad to worse. One day we noticed her sats were terrible and all day we said it didn’t seem right. It was a lot worse. Well finally someone listened to us, took a chest x-ray, and saw that she had yet another pneumothorax requiring another chest tube. I was livid that it took that long for someone to listen and take care of the problem. We also felt we weren’t being listened to with some other issues as well. I blew up and I think I almost made a resident cry. It was very, very bad. We were all falling apart.
Every tiny bit of hope and improvement was followed by a giant setback. They had been planning to try remove the vent and either get her back on bipap or do a tracheostomy. But then her hemoglobin dropped significantly so they were concerned there was an active bleed. There ended up not being a bleed in her lungs but all of a sudden she required more oxygen and her blood gasses were looking worse. There went all hopes of extubation. It turned out the blood was coming from her intestines (it was coming out of her NG tube) and they seemed to be able to address that. But her carbon dioxide levels were high and she still required more support on the vent than when they were considering extubating. She was more alert and communicative but nowhere she needed to be to get off that vent. She also tested positive for yet another bacterial infection.
Everyone knew that the breathing tube had to come out. The plan was a trach but first they had to make sure the bleeding had stopped and she had no active infections. The hope was that she would be able to move more with the trach, get things moving in her body, and get that fluid out of her lungs. Ariella was looking forward to getting the trach. She was looking forward to drinking, eating, moving, walking, and getting back up to the 5th floor. The goal was that 2 or so weeks after trach placement, if she remained stable and blood pressure could be managed with oral meds rather than IV drips, she would be able to leave the ICU. Because yes during all this time she still had all those other issues. But with the news of the trach Ariella was in a much better mood and her anxiety decreased. She was awake a lot more, communicative, watching TV, playing tic-tac-toe, and doing crafts. Her humor was back as she was pranking doctor, nurses, and respiratory therapists with a fart machine one of her doctors gave her. She even asked for a friend to visit. We had plans and everyone’s hope was back. Is it better to have hope and have it completely shattered, or is it better to lose all hope?
On April 24 Ariella had the trach placed and we could finally really see her face again. When she woke up from the surgery and I told her the tube was out she gave a big smile. She was frustrated that it would still be another week before she could try drinking but at least she was much more comfortable. Several days letter she did get to try some drops of water which made her so happy. But as had been our lives the entire stay in the ICU, tiny steps forward and giant steps backwards. Ariella had fluid around her heart which had to be drained and respiratory-wise she just wasn’t improving. We were making good weans on the vent but then had to go back to higher settings. Our hope once again was fading.