Good Week

I should be in bed right now, as it's midnight and Oliver will be gone all day tomorrow in Columbus for work, but I feel a little wired.

I'm glad to report that I think Sofia has turned a corner in her recovery. This has been a good week. All of her blood work from Monday was normal. She had another appointment with Dr. Edwards on Thursday, which we all went to, and I felt like I was back in the loop. The reason for the referral to the liver specialist is because she's a gastroenterologist and will evaluate Sofia's gallbladder. I was all stressed thinking something was going on with her liver, but that appears to be fine. In addition to have good labs, she had a good appetite today. She also is now taking potassium (unbeknowst to her) in her orange juice. I have to mix it with a lot of o.j. to hide the taste, but eventually she drinks it all. Her energy is good and I found that this week I haven't been watching her quite so closely to make sure she's feeling well.

In other news, I went to the first meeting of the Mended Little Hearts last night. Actually, Oliver and I went together and my mom babysat the girls. It was in Independence, which is a good 45 minute drive, but it was worth it. It was nice to see some familiar faces and some new ones that I have only seen on facebook! I really think that a support group for families of CHD is something that is needed in this area and I think this group could really do some great things. One of the projects discussed was putting together care packages for families at the hospitals and visiting these families. Doctors can refer families to MLH when giving a CHD diagnosis for emotional support, which is something I think many could benefit from when facing the ups and downs of having a chronic condition. I'm not sure I would have been able to get involved with a group like this when Sofia was born because it was such a shock and everything was pretty raw, but I feel like I'm in a good place now and CHD is a part of our lives. Anyway, I'm going to be the treasurer and I'm excited to be a part of this new group. There were about 15 families there, and I thought it was really nice that Dr. Edwards was there and one of the nurse practitioners from the Clinic. It was great to see the health professionals getting involved with something like this too. Dr. Edwards talked about lobbying in D.C. for pulse ox testing in all newborns, which is something that would have detected Sofia's cyanotic heart condition sooner. The Clinic is now doing this on all newborns. I'm not sure about other local hospitals, but I know Lake West, where Sofia and Adelaide were born, was not doing it when I had Adelaide in late 2010.

We registered Sofia for preschool for the fall and I'm so excited for her to go. I really think she is going to love it.

Adelaide is doing well too. She is at a very cute age and you can just see her learning. She repeats almost anything you ask her to say (our favorites are how she says vegetables, watermelon, and love you amongst many others).

I heard that a little boy about Sofia's age named Charlie got his new heart at the Clinic today. I first learned about him about him when Sofia had just had her surgery, and a former classmate of mine who taught his brother posted on facebook about him and I kind of kept my eye out for him while we were there. He has been in the hospital a long time and we caught glimpses of him while we were there for our stay. Please keep him in your thoughts that his new heart is strong and works for a long, long time!

Praying for Normalcy

We've battled some ups and downs over the past week or so. Sofia had been on the mend, but she ended up developing a cold last week and that took its toll on her. She had a cough and apparently didn't get enough fluids and ended up back in the hospital last Thursday. Her electrolytes were out of wack. She had an abnormal EKG due to the dehydration, and she was given IV fluids on Thursday evening and potassium over night. I stayed the night with her Thursday night, and Oliver went home to be with Adelaide. Sofia ended up staying in the PICU because her cough they didn't want her on the floor. She didn't really need to be PICU and she didn't have heart issues, but I guess if she was on the pediatric general nursing floor a floor below, the cardiology staff couldn't get a her data transmitted upstairs. So she didn't really belong in the PICU, but that's where she ended up. I stayed with her on Thursday night and she ended up pulling out her IV overnight when she was about halfway through the potassium. Luckily, we were able to get her to take oral potassium, and didn't need the IV reinserted. You should have seen how pleased she was with herself for taking it out. I was kind of horrified. She stayed Friday night as well and came home on Saturday. It was clear that being rehydrated she felt much better.

We are relieved she is feeling better and we're trying to get back to normal. There are some things that we are dealing with still. It was discovered that Sofia has gallstones. Yeah, that's right. Diuretics can cause them or her being cyanotic could also have caused them. I think Dr. Edwards believes it is related to the cyanosis. I don't know if gallstones can ever resolve themselves or that we just hope that they don't cause her problems. (in a family where her mom, aunt, and grandma all had their gallbladders removed, I fear for her gallbladder). For now, we'll just see how things go. Her liver also felt enlarged a few times throughout her hospitalizations. I think this is probably related to the pleural effusions (fluid around the lungs). Her liver appeared to be normal sized when she had an ultrasound and her liver function as seen through blood work has been normal. I will talk to Dr. Edwards about this at her next appointment because Oliver took her to the one yesterday. I pray this is also something that will just be resolved over time as she gets further out from her surgery.

Giving her medications has become a struggle. She is still on 2 diuretics and ibuprofen, which she takes pretty well. We dread the potassium because she can't stand it. We were able to switch to a pill form of lasix because she was absolutely refusing it, despite mixing it in juice or trying to get her to take a syringe. The pills are very tiny and she swallows them down easily. The potassium pills are much bigger and no matter how you cut it, they are nasty. The liquid is apparently nasty too. So we're working on this. I fear that so much control has been taken away from her that she is just trying to get control where she can get it. She was only on aspirin prior to surgery, so it is difficult for us to follow a close regimen of medications, and I hope that she will be taken off these soon.

Her heart function is good. She had an echo yesterday. I'm relieved that most of these bumps we've had are aren't cardiac related, but I'm still down that we're having bumps at all. She has no more fluid around her lungs and just a tiny bit around her heart, which is being treated with the ibuprofen.

I didn't go to her appointment with Dr. Edwards yesterday and I regretted it. When Oliver came back and told me about her liver, I had anxiety. I felt better after talking to Dr. Edwards over the phone today, but realized that I still need to be going to her appointments. There is too much getting lost in the translation, if you know what I mean. It's hard because I've used so much of my sick and vacation time and am really getting to the end of it.

On Thursday, it will be 7 weeks since her surgery, please say a prayer for us. I was sad to hear that Sofia's former roommate, Margaret, has not yet been released (she has had prolonged fluid issues), so please say a prayer for her too.

Happy Father's Day

Slowly over the past week or so things have been returning to normal. Sofia had a good check up last Wednesday with her cardiologist. Her energy level has been really good too. She did lose quite a bit of weight from surgery and recovery and for a few days looked so thin to me (all those diuretics too). Her appetite has been better too.

Today she threw us for a little loop. Over the past 2 days she's developed a cough, which seemed worse at night, but fine during the day. This morning she had a very distinguishable barking cough. She complained of her back and chest hurting. Just to make sure everything was ok, we called the cardiologist on call and ended up taking her into Hillcrest ER. They did a chest x-ray, which looked them the same as her x-ray last Wednesday had. They didn't do any other treatment and she came home this afternoon. Tonight, she seems to be running a low fever, but we'll just keep an eye on her.

I had my first full week back at work last week and it was tiring. I hope to be back into the swing of things this week. There just seems to be so much going on and hard to keep up. Oliver started his new job 3 weeks ago and this week our new babysitter starts. It might be a little adjustment for the girls to have someone new watching them, but I think it will definitely be a good thing. It's still hard to believe that Sofia's surgery was almost 6 weeks ago. I can't wait to get her started in dance and/or gymnastics this summer. And she will be really excited to return to swim class. Oliver seems to have limitless energy and I'm struggling to keep up. I'd really like to get back to the Y myself!

WHEW

We were so relieved after good news at the doctor's office yesterday. Dr. Stewart said Sofia's x-ray looked a lot better! He said he was hoping for a little better, but it was a lot better. Yay! It's about time for some good news. He thought they would be putting in a chest tube today and there was a PICU room ready for her. Dr. Edwards stopped in to chat, and we will follow up with him on Wednesday. I think we've turned a corner and are much happier to be spending this weekend at home rather than in the hospital!

Take Three Averted...For Now

I'm a little delinquent with updating, and I find if I don't update when I'm thinking about it then it gets harder to update later. So, here goes. My last entry was when Sofia was in the hospital (for the second time). She was readmitted Wednesday (5/30) and discharged Sunday (6/3). Her chest tube that was put in that Thursday only drained fluid for about 1 day then petered off. She was playful and active on Saturday and Sunday and seemed to be feeling good. The was in contrast to her roommate, Margaret, the other 3 year old who had the Fontan surgery 2 days before Sofia, who slept a lot and seemed pretty lethargic. The chest tube was removed on Sunday and we were able to go home again. Dr. Lorber was the cardiologist on the floor this week (who I remembered as he the doctor who did fetal echos on me when I was pregnant with Adelaide), and he did an echo on Sofia Sunday before we went home and was satisfied that the pericardial effusion (fluid around the heart) was small and the chest x-ray looked ok.

It was nice to be back home again. This rollercoster of a month (going on two) is not as much physically draining as it has been emotionally draining. That reminds me that today it has been 4 weeks from Sofia's surgery. Wow. Feels like a whirlwind.

Yesterday we were back at the main campus for a surgical follow up. She had an x-ray, echo, and appt. with the surgical nurse scheduled. After the two tests, we waited in the exam room for about 40 minutes before Dr. Stewart (surgeon) came and in and told us there more fluid. He showed me the x-ray, still has fluid on right side, and the echo. He seemed defeated by this. Maybe not defeated, but just a little disappointed that it came back. He had us wait while he and the cardiologist talked things over and weighed the choices of admitting her and putting her on IV lasix or seeing if we could change her at home meds and letting her go home with the condition that she come back for follow up Friday (tomorrow) morning. After discussing with the cardiologist who did they echo, they were satisfied with the decision to let her go. Her heart function is good and the fluid hadn't gotten worse around the heart. They added another diuretic (diuril), which she has to take in addition to the lasix and let her go home. She hates the taste of lasix and gagged and threw it up yesterday. From here on out, we are going to have to only mix with juice to get her to take it. Anyway, I think Dr. Stewart was expecting to see her looking like she wasn't feeling well, but they said that she looks good in spite of the results. And she was very energetic today. Hard to gauge when she's not feeling well because she's not exhibiting symptoms of this fluid accumulation.

Really hoping that something changes by tomorrow morning and that things look good. I'm packing an overnight bag just in case.

Adelaide had her 18 month check up on Tuesday (she turned 19 months old yesterday). She didn't even cry when she got her one shot. She's such a big girl! She is repeating everything you tell her and she's putting two words together. She is 26 lb. 3 oz. and is in the 85th percentile for weight and 87th for height. Growing up so fast. Her hair seems to be turning blonde, but I hope she keeps the strawberry. She definitely has the red headed temperament!

Short and Sweet

Don't have much time to update. Pretty tired today. Oliver and I have basically been switching places for the past 3 days while Sofia is still in the hospital. Here are the highlights: She did get one chest tube put in on Thursday on the right side (under anesthesia, done by Dr. Stewart). She has fluid around right lung and around heart. She is acting normally and is pretty much herself, which is good. She wanted to draw, paint, and go to the playroom and look at the aquariums. Chest tube drained a good amount on Thursday, but almost nothing at all last night and today. This could be a good sign if her chest xray looks good tomorrow. Someone screwed up last night and put her on IV fluids thinking she was too "negative" (they measure all her intake and output and want her to be in the negative). Cardiologist wasn't happy this morning when she found out about that. She still has some fluid that needs to come off and shouldn't be getting any extra input. Dr. Edwards brought Sofia a giftcard today. I think he was feeling bad about readmitting her. He also stopped in to say hello and said she was looking better to him than she did on Wednesday. The most annoying thing is all the wires and tubes she's hooked up to. It is so difficult to just go to the bathroom or walk down the hall. The chest tube drains into a box (no plastic ball like before), she's on oxygen to help her out, and all the leads and wires make for one big mess. She had several wagon rides today, but I know she should also be moving around. I know she is where she needs to be right now, just hoping it isn't too much longer!