It feels like years since I last blogged even though it's only been two weeks. I did get a chance to read some of your blogs but not to comment. It still feels like I'm lost in blogland though. I feel like I'm constantly apologizing for not writing and some of my Kindle subscribers have probably dropped me, but honestly I'm afraid to check to see if they have! If you're friends with me on Facebook then you have some general idea of what's been going on. If you aren't you've probably been going "WTF?!". Don't feel bad, I've done alot of thinking that lately too.
So on the 17th of August we headed to the hospital with Lu for her splenectomy. The surgery went well. The doctor came out and talked to us afterward and said it took longer than planned because he tried to keep the incision small for her. (and yet it still ended up being 6 inches long!) He said she only lost a quarter unit of blood. Things seemed promising. They put her in the ICU for the night just to monitor her. They'd put in an epidural for pain relief and it was working so well that she wasn't in any pain at all. The night was good even though we got very little sleep. ICU is a noisy place and they check on you frequently. Plus Lu is a beautiful young girl and the nurse was a hott young very talkative guy.
Wednesday they moved her to the pediatric floor. The surgery floor was full and she was close enough in age to be able to stay there. That was a great choice. The nurses on that floor were wonderful. Wednesday was another good, pain free day for her. The only complaint she had was the bladder catheter they have to leave in while you have an epidural. It grossed her out.
Thursday the surgeon said they could take out the catheter and the epidural and she could get out of bed. Unfortunately, when the epidural meds wore off, there wasn't enough other pain meds in her system. I watched my baby writhe in pain for 3 hours while they tried to get it under control. Three shots of Toradol, two shots of Morphine and countless Loritab later she was finally comfortable again. Watching your baby in that much pain is something no mother should have to do. I've never felt so helpless. And in case anyone is wondering, Lu has a really high pain tolerance so this had to be agony for her to complain.
Friday, the pain was under control, but since she hadn't been able to use the bathroom, despite countless tries, they had to re-catheterize, she'd also spiked a temp so they added an IV antibiotic and did a urine specimen. It came back positive. So they added another antibiotic. Unfortunately, that same day she began vomiting and couldn't keep anything down. They gave her anti-nausea meds every four hours and they would knock her out for 3 and then she'd be awake and nauseous for the hour in between. It was a rough day.
Saturday she was still nauseous and feverish and the surgeon decided to do a CT scan to check things out. The CT scan revealed pneumonia in her left lung and a pocket of fluid in her pleural space. The surgeon called in a pulmonologist (lung specialist). The lung doctor wanted to watch her and wait, if things got better, no problem. If things got worse then he would have to draw some fluid off her lung. That night she ran a 101.8 fever.
Sunday I started wondering why the doctors couldn't seem to get this figured out. I mean the surgeon was off the hook- he had done his job and whatever was wrong now was beyond his speciality. He continued to see us and coordinate with the other doctors but he readily admitted he was baffled. She did get that catheter out again and seemed to have no trouble in that respect. And I do admit she wasn't giving the doctors much to go on. She had no cough, no pain, no shortness of breath, no real symptoms save fever. Sunday night she spiked a 103.5 fever. As the on call hematologist said "we could pop popcorn on you girl!". The nurse said "I'm going to call the doctor as soon as I can figure out which one to call!" A doctor was called, tylenol was ordered and the fever broke. And Lu ate pizza.
Monday I was frustrated. They did the Thoracentisis, which means they gave her a numbing shot in the back, then inserted a huge needle and drew off a sample of the pleural fluid. Lu took it like a champ. She is the strongest bravest girl I know. And I managed to comfort her and not pass out when I saw the sight of that needle. I did move so I wouldn't actually see it enter her back though. They sent off the sample. When her regular hematologist, who'd been off all weekend, showed up he was angry that they still didn't know what was going on and had called in an infectious disease specialist. Finally, someone agrees with me that this is crap and they should be able to figure it out. I was seriously considering demanding they send her to a bigger hospital but figured I'd see what the new guy had to say. I'm glad I waited. Dr. Saeed is amazing. He studied her chart before he came in, then he pulled up a chair and said "tell me about the last time she was healthy". I explained that Lu had always been kind of sickly, that she'd had whooping cough her freshman year, and that when the ITP was under control was when she'd been her healthiest. He asked about me and I said, that yeah I'm also puny and get sick easy. I told him I'd seen an immunologist once but no one ever followed up because my doctor moved. He told us we were very interesting. Then he examined her and told us that he was very sure Lu had a immune deficiency to begin with and when they removed her spleen (the captain of the immune system) it seriously depleted her immunities. He said the catheter introduced bacteria into the urinary tract causing that infection. The ventilator probably allowed some perfectly normal mouth germs to infiltrate her lung causing an anaerobic infection in the fluid in her chest. And that she also picked up pneumonia. He changed antibiotics around and added a special one for the anaerobic infection. He said she should be better in a few days and able to go home.
Tuesday her fever never did go above 100.8 degrees. Unfortunately that's still considered a fever and you can't be released from the hospital until your afebrile for 24 hours. She still had nausea and wouldn't eat much and she did throw up the antibiotic he ordered. So she was started on anti nausea meds again. I got my records from the immunologist faxed to the hospital so he could see them. He declared them interesting and said that I should have the follow up testing and that he was sending Lu to an immunologist here in town, but if he didn't seem to be going to do the testing she needed he would find us one in a larger city. He believes that Lu has basically no immune system currently.
Wednesday she was doing better. And her fever never went about 100 degrees. We'd started doing laps in the hallways to help get the fluid from her lungs. She had to wear a mask when she left her room but finally we were free of catheters and IV poles. That makes the going a little faster. People looked at us funny of course. Some pitying, thinking she had cancer. Some scared, thinking she was contagious. We'd gotten to know all the nurses so well and even the secretaries and housekeepers. There was always someone to chat with. But we were ready to go home.
Thursday she was discharged. We left with two antibiotics and anti nausea meds. And Dr. Saeed gave implicit instructions: Lu is not allowed in public except for doctor appointments and she has to wear a mask.If she should run any fever at all, call him. If she runs a fever over 100 or has a cough or chills we are to go immediately to the Emergency Room and tell them he sent us, he will come and admit her. I'm praying that doesn't happen.
It's good to be home. We both were happy to sleep in our own beds and take a shower in a room without bumping into anything. Those hospital bathrooms are killer. I do have to set my alarm and wake her up to take meds so that they are spaced evenly apart. And I do take her temperature alot but so far so good. And she's still not eating normally. Smoothies, noodle cups and such at least give her some nutrition. She lost 9 pounds in the hospital. By the end, dietary was sending up protein shakes. Because when you weigh just barely enough to begin with, 9 pounds is alot.
Someone asked me if we knew this was a possibility before we did the splenectomy. The answer is no. No doctor had ever really questioned her immune system. We had no idea she might be immune deficient to begin with and that taking out her spleen would cause serious and life threatening complications. And yet, the spleen had to come out. All treatments for ITP are immune suppressing. But the future is uncertain. We're facing alot of testing in upcoming months while they try to figure out which immune deficiency she has and how to treat it. We don't know when she will be allowed to leave the house. Once again, her life is on hold. I'm not sure she realizes the seriousness of it quite yet, but so far she is handling things with remarkable calm.
Thank you to all the staff and doctors who worked with her during our hospital stay. Everyone was respectful,kind and caring. And thank you to Dr. Saeed for getting us home at least. I have the utmost confidence in his ability to see this through to a solution.
And thank you to everyone who sent prayers, well wishes, good thoughts and offered real and moral support. I don't know how I'd get through this without you all.