The last five days have been the longest, most exhausting days I have ever experienced. The day after I posted last, Sara went back to the ICU. I knew she had been transferred back there, but what I didn't expect was a phone call from my dad at 8:30pm telling me that I might want to head to the hospital. It was the start of a very long night.
As soon as Jayson got home from seeing Jaxson, I took off to go see my sister. Oxygen saturation plummeted. Possible heart injury. Fluid on her lungs. Heart rate sky high. Blood pressure low. Skin as cold as ice. Literally. Had I not seen her vitals, I would have thought she was dead. I kissed her and made sure she knew I was there, even though she couldn't respond because she was on pain meds. Then I discussed what to do about Ariella and Lexi with my parents. The doctors actually told us to "hang around for awhile." Which made us really nervous. They didn't know if she was going to make it through the night. So I offered to take the girls back to my parents house and take care of them for the night.
I might have a newborn, but I certainly don't feel like it because he hasn't been home yet. I forgot what it's like to only get 2 hours of broken sleep. And to listen to a baby cry. Ellie was really good most of the night, but when I put her down to pump, she became inconsolable. She had been fed and changed so I had no idea why she was crying, and at 5am I was at my wits end. But I got through it and when I picked her back up she was fine. She's still going through some withdrawals, so I'm sure that was part of it, but it was so frustrating. Neither Jeffrey nor Jaxson are big criers, so it was a new experience for me. One that made me appreciate how calm my kids are. And I know that Ellie is just a normal baby, she was just trying to tell me she wanted to be held. I'm just not used to it.
So at 8am on Friday I had to leave my parents and go to Children's to meet with Jaxson's doctor. We set a plan in motion for him to come home. Mind you, I hadn't been home in 12 hours or slept in nearly 24 hours. I managed to get the plan set (I'll get there shortly) and spend a few minutes with Jaxson before heading home. Thankfully, Jeffrey was down for a nap when I got there so I was able to grab a few Z's until he got up. Jayson had to work that night, and thank goodness Jeffrey is an amazing kid. He and I layed around all night.
Meanwhile, I'm getting updates on Sara throughout the day. Nothing much different than when I left. CT on heart and lungs negative for clots, still trying to figure out what is wrong with her. Finally diagnosed with disseminated intravascular coagulation (DIC, see this website http://www.nlm.nih.gov/medlineplus/ency/article/000573.htm). Liver enzymes at 10,000 when they should be 20. Kidney functions okay. EKG on heart normal. Started treatment. She became stable but was still critical.
I'm learning these things during the day as I'm trying to take care of my family, so focusing on both was nearly impossible. Jaxson's plan became to see how he did with his feeds over the next week and go from there. Learned what it meant if he had to come home with a feeding tube. Surprised I can even remember that, will get there shortly.
Saturday morning rolls around. I'm pumping before I head to the hospital. Jayson comes in, "Mom just called and said she needed me, I couldn't understand anything else." My response "Go." I knew what that meant. She either had a stroke or was having a stroke. He went to check on her. Definitely had a stroke. He convinced her to go to the hospital and spent most of the day there with her. I managed to squeeze in an hour with Jaxson, leaving Jeffrey at the clubhouse. They take Julie down for an MRI, Jayson comes home to do a tattoo. He then goes back to see his mom, swings by to see Jaxson and runs by his moms house to let her dog out and feed her. All the while I'm getting updates on Sara. She's doing better but not out of the woods. Jayson and I both crash Saturday night.
Sunday morning, yesterday, I can't even remember what we did. I know I went and saw Jaxson and Jayson went to see his mom and later to see Jaxson. But I think that most of the day we just watched TV and tried to stay up to date on everyone's health status. No change on anyone yesterday.
Today was more of the same. Sara's bloodwork is trending in the right direction. Still doing tests as now she has hyoetenson in her heart and lungs. Good news: they let my mom bring Ellie to the ICU. Sara hadn't seen her since Thursday. Still very critical, but stable. Julie is the same. They want to release her to a rehab facility, so we're working on that. Jayson and I are exhausted. I scraped the back fender on h car at the hospital (if people knew how to park, I wouldn't have cut that so close) and then I dropped my phone. It was a long day.
There is good news here, though. Jaxson got his PICC line out Saturday night. Since then, he's taken anywher from 10 to 38mL from the bottle! He took 22 for me today. Which bodes well for the plan we set in place. Jayson and I decided that we wanted to see how he did once the PICC came out and he was no longer on antibiotics. We are giving him a week to see what he does. On Friday we will reassess the situation and decide what our course of action is. If he's doing well, we may give him another week to see if he can start taking full feeds. If he's progressing, but not quickly, we may say okay it's time for a feeding tube. If we do that, it's still another week before he comes home. It would be his first surgery, making for a total of 4 in his first year. But if it gets him home, I'm okay with that. The tube goes directly in his stomach and cane be covered by a onesie, so the chances of it coming out or getting pulled out are slim to none. And we can guarantee that he's getting enough to eat to grow and be healthy. It's not ideal, but it is what it is.
So everyone is in a place where they're being taken care of and on the right track. Jaxson officially knows when I'm leaving and cried when I put him down today. I was able to calm him down before I left, but I was in tears as I left the hospital. I miss him so much. And I have to go back to work next week. Which is going to be a whole other adventure with scheduling. But we'll deal with it as it comes, just like everything else.
And through all of this, Jayson and I have bitten each others heads off and made the other cry. All with the understanding that it had nothing to do with us, but with everything going on around us. Today I asked Jayson what I could do to help him. He told me to know that he's not mad at me when he bites my head off. I laughed and told him I could do that as long as he understood that it wasn't his fault when I burst into tears. He laughed and said okay. That's just how we've been working. We've been a lot more open with each other, a lot more patient and a lot more understanding. I'm lucky to have such an amazing partner. I know I couldn't do it without him!
It's funny, this blog is designed to chronicle everything Jaxson is going through. But everything going on in my life directly affects Jaxson because it affects my ability to care for him and be there for him. With so much happening in the last few days, poor Jaxson hasn't seen much of his daddy. I've been there almost as much as before, but not quite as much on some days. And he's still fighting through with the help of some amazing nurses and doctors. He's such a strong little boy already, I can't wait to see how much stronger he ends up before this is over.
If you're the praying type, just pray for strength for Jayson and I to continue to do what we do. Understanding for both of us to know when the other is overwhelmed and needs a break. Strength for Jaxson to keep improving so he can come home. Continued understanding from Jeffrey and behavior that shows he's still okay. Pray for Sara and Julie's doctors, that they would ensure proper treatment so they can both come home. Pay for my parents, that they would be able to rest while taking care of a newborn and not kill each other in the process. That they would maintain their sanity as they try t care for two children and support their other two daughters. Pray that we all remain supportive of each other and find some peace on knowing that this is temporary.
Thank you to everyone who has sent me a message or a comment in the lat few days. Even if I haven't responded, I have read all of them. It means so much to hear from everyone, no matter how long it's been since we spoke. Thank you all for everything, and a special thank you to Phil, who brought us dinner on Saturday. The timing was perfect!
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