Derailed

Well, today certainly didn't pan out as expected. Sofia had her follow up with her cardiologist today at Hillcrest 8:30 and had and X-ray that showed fluid around right lung and heart. We were given time to go home and pack bags and return to main campus because they wanted to admit her. We did stop for some preventive frozen yogurt on the way though, as I knew that today was not going to be easy on Sofia. Took quite a bit to get an IV into her. We talked with Sr. Stewart, the surgeon, and Dr. Arruda, the cardiologist on the floor. The plan is to administer IV lasix, do a X-ray on the morning. and decide after if she needs a chest tube reinserted. She cant eat after midnight because of she needs the chest tube, it is going to be done at 8:30 am. Dr. Stewart called it a pigtail chest tube and I had to look that one up. It is smaller than the chest tube she had previously. I'm hoping IV lasix will work miracles tonight and that she won't need the chest tube. Prayers for Sofia tonight! Oh, and she is in a semiprivate room (no pod!) and her roommate is the girl who was here when Sofia had her surgery. She was also readmitted for fluid issues after she had been discharged originally. She has been back though for 9 days! Let's hope it does not take Sofia this long.

Full Speed Ahead

Finally getting a minute to update. Sofia is doing well at home, and she has resumed to a lot of normal activities, which we are grateful for. I'm actually home with the girls today because Oliver started his new job today. I am enjoying spending some extra time with my two favorite girls. I will be at home with them today and tomorrow and two days next week. After that, if Sofia is well enough, we have a new babysitter who is going to come to our house two days/week. She is actually someone Oliver knew from the YMCA, and he coached her younger brother this year on his swim team. She is 21, going to college part time for special ed, and seems like she will be a good fit. She had a "trial run" with the girls before Sofia's surgery and things went well.

Sofia has made a lot of progress since her surgery, but still has a ways to go. Her stamina is improving. We are encouraging her to nap during the day because going the whole day without one makes for a long day for her. She wasn't napping regularly before surgery, so I'm sure once she's feeling 100% she'll cut naps out again. Most of the time, she seems pain free. We are still giving her Tylenol when she gets uncomfortable. The worst time seems to be overnight, and last night she woke up several times. I'm hoping she'll get a full night's rest soon. She is so upset when she wakes up in the night and it is hard to calm her back down. We had a busy Memorial Day weekend and it was evident that Sofia is still healing. We went to my godson's birthday on Saturday and she got overwhelmed and tired and we left early. We had lunch on Sunday with our extended family and she held up well, and on Monday we had a barbeque at my mom and dad's house. That was easier because we just kind of took it easy.

She is still on lasix twice per day. It must taste awful because she never wants to take it. She was always pretty good at taking other meds when she's needed them before. Today she had a lasix and orange juice cocktail and that seemed to go over pretty well. She's usually always better at taking meds for her daddy, and since he's not here today I thought this morning would be more challenging. I'm glad she's just on lasix and apirin.

We follow up with her cardiologist, Dr. Edwards on Wednesday. I'm interested/nervous to see where her sats are. There are moments when she looks pink and there are moments she looks blue, especially when she's upset about something. I'm hoping for the 90s tomorrow!

There's more I'd like to type, but the girls are pulling me away. I'll update more after her appointment tomorrow.

Home Sweet Home

Admitted: 5-10-12
Discharged: 5-20-12!

It is nice to have Sofia back at home, and I'm sure she feels happy to be back home. We left the Clinic at about 3:30 yesterday afternoon, so she had some time to play and enjoy being back home before going to bed. She slept pretty well last night. She woke up at about 3 AM just tossing and turning but said that nothing hurt, but after a few minutes of this I could tell she had some pain. After a dose of tylenol she went right back to sleep. Oliver was with her today, and I returned to work. So hard leaving her today. I thought I would at least have a few days with her at home before I went back, but I expect to be taking off some time next week and the following week to be with her when Oliver starts his new job. So she apparently had a good day today. I liked seeing her play today and resume some normal activities. She is on a 1/2 liter of oxygen, hopefully just until her post-op visit on Wednesday where it will be determined if she can come off it. It would certainly make getting around and recovering easier, but she doesn't seemed bothered by it, so that is good. Grateful she is back home!!

visiting her friends!

Day 10 - Saturday

Good news of the day is that Sofia's chest x-ray today looked "a million times better" according to Dr. Stewart. yay. all that lasix paid off. Last night was a busy afternoon in the pod and Sofia got moved to a private room with en suite bathroom. Thank God. She and Oliver slept much better last night. She did get a roommate today, but it is still much quieter than in the pod. She is expected to be discharged tomorrow, but I will hope for the best but prepare for the worst, which would mean another night here. Her doctors wanted to try her again without oxygen today, but it seems like the nursing staff isn't supportive. Every time her numbers dip a little, they crank back up the oxygen. She's been in the 90s for the past 25 minutes, so we are going to push to try her with no oxygen shortly. If she needs it, then she can be put back on, but she needs to be tested so we know where we stand.

Sofia is very much back to herself. Adelaide came to visit today and it was nice to see the BFFs back together again. Sofia ran down the hallway today. She was actively playing in the playroom today. She's eating a decent amount. I am grateful for all of these things!!

Cannot wait to have her back home.

Day 9 - Friday

We had the discharge papers in hand, but didn't make it out the doors. The doctors reviewed her chest x-ray from this morning and found that she has a right pleural effusion (fluid around lung), so there is no home today. At least a few more days according to Dr. Hill. Her IV had already been removed and they were literally getting her prescriptions finalized for home. The tentative plan is to get a new IV in her (she will be given versed to relax her) and they will start IV lasix and another diuretic. They are going to run this by her surgeon, Dr. Stewart, who is currently in the OR. The other option is putting a chest tube back in and draining the fluid. This would have to be done under general anesthesia.

Let's just say UGH! I don't feel bad about staying a few more days, but I can't help but feel bad for Sofia. We had already talked about going home today, getting frozen yogurt on the way home, and seeing Adelaide. She was really looking forward to it. I should have waited until we were actually out of the doors to tell her we were going home. I am at least glad that it was caught on today's x-ray because she probably wouldn't have done well this weekend at home. This is another contributing factor to her crappy sats. Please let this get resolved soon. She was looking so good this morning and really was back to her normal self. I can't imagine what putting a chest tube back would do to her spirits. I'm praying that tomorrow morning's x-ray looks better than today's.

Oh, and to top it off I woke up totally dizzy. I ended up having to have my mom drive me to the doctor before we came here and apparently I had an episode of acute vertigo caused by allergies. That's a first for me. She doesn't expect it to continue, but all I can say is that it was awful.

Day 8- Thursday

It looks like Sofia will most likely be coming home tomorrow. I felt like I had a lot of unanswered questions when I came in today primarily because she hasn't been weaned from oxygen because her pulse ox hasn't been staying up when the oxygen has been reduced. She was lowered to 1 liter of oxygen today, which she is tolerating. We had a good chat with Dr. Hill, who is the cardiologist on the floor this week, who has been great. So helpful today and he really spent a lot of time with us. He drew us pictures, which I feel like always helps. He thinks there is 1 or 2 things or both that are contributing to her lower pulse ox. 1- She has a little bit of "wet lungs" which is called atelectasis, which is basically a side effect of surgery. It is a collapse of the lung, or when the lung doesn't inflate. Walking and moving around a fully using her lungs again should resolve this. 2- The other contributing factor is that she has some small collateral vessels, which are common in single ventricle patients. Apparently she had them prior to surgery, but they were small and didn't need to be addressed, aka coiled off. The collaterals act as kind of a top off for blood flow. If the flow finds a higher resistance in the pulmonary arteries (if she were upset and not breathing deep) then the body makes these collateral vessels and the blood might flow through these collaterals instead of through the PAs). This can cause a lower pulse ox because when blood goes through the collaterals then you have a bit of mixing of red and blue blood. The plan is to let her fully recover from surgery and and monitor where pulse ox is. Best case scenario is that it was all related to the lung collapse and not the collaterals. Dr. Hill's opinion is that if her pulse ox is still between 80-85 percent after she has recovered then we may consider going through via a heart cath and coiling off some of the collaterals, so blood cannot choose to go through them and that will eliminate the mixing. She may go home on oxygen for a short while. We are going to see how she is today on 1 liter of oxygen and then experiment with no oxygen. I guess she has already been scheduled an appointment on Monday to have a chest x-ray and follow up with surgical nurse and with Dr. Edwards the following week (her cardiologist), so it appears we will be going home soon. I know she is looking forward to being home and normal again and so are we.

It is evident that Sofia is feeling better. She is walking standing straight instead of hunched over, and she has been on her feet a lot in the past day. She actually tried to run today! We got to take her off the floor and go walk around the lobby, see the aquariums and art work and go see the tunnel of lights. I'm so glad she is returning to her normal self.

The nutritionist stopped by and said we should continue to vamp up Sofia's protein intake. Her albumin was on the low end and meat and dairy are encouraged. Her appetite has been pretty good and now they're bringing her snacks.

And the other development is that she was taken off coumadin and put back on aspirin. I guess cardiologists are divided 50-50 on preference, and Dr. Edwards prefers aspirin. According to the doctors, there is no clear consensus on which one is better post Fontan, so we will keep her on aspirin for now. This is kind of a relief as we will be able to avoid the frequent blood draws and dietary issues that come with coumadin.

Day 7 - Wednesday

I had originally been hoping that I wouldn't be posting a Day 7 and that we'd be home, but things have a tendency to turn out without regard to how we want them to go sometimes (especially in the CHD world). Nevertheless, Sofia had some progress today - they removed her chest tubes! It was done under sedation (versed), so she was pretty calm. I was there with her the whole time and the surgical nurse cut out the stitches and pulled out the tubes- those things were long! at least 4 inches. I can see why she's feeling better now that they're gone. It was decided during rounds this morning that they could come out today. Also discussed in rounds was the goal to wean her oxygen and also get an echo since she hasn't had one post surgery yet. She had an echo around 2, but I left for home around 3 today, so we didn't have the results. When I talked to Oliver this evening, he said no one ever gave him the results, but he asked her nurse and to her it looked like the report said everything was fine. He'll make sure he asks at rounds tomorrow morning. I would think that we would have been told if something wasn't right, but I don't think that they realize sometimes that the parents sit there and hang on waiting for the results of every test done on your baby. The attempts at weaning the oxygen were a no-go. To be honest, I'm not sure if there was that big of an attempt. The surgical nurse experimented from taking her from 2 liters down to 1.5, but the nurse was in the room the whole time. Well, I know that Sofia gets agitated when there are people in the room, so if someone is hovering then I'm not surprised that she would de-sat. I don't want to oversimplify it because her lungs haven't looked perfect in her x-rays so I'm sure something else is going on, but maybe the next time they try to test out reducing the oxygen they do it when she's super calm and with just us in the room. The resident said this morning that there was some improvement on her chest x-ray from yesterday, but it almost looks like a slight collapse of the right lung and not fluid as they originally thought. I guess time will tell, and we'll see how it looks tomorrow morning. Respiratory therapy is coming several times a day to percuss, and she is encouraged to blow bubbles and walk, which are good things for the lungs. I'm pretty sure if she can get her sats up without oxygen we won't have much longer here.

We waited this morning for the therapy dog that was supposed to come in, but we got visited by 2 Cleveland Browns players instead. Sofia didn't want to have anything to do with them, but I got a good picture and a signed Browns pennant and coloring book. There is no mistaking that I know who the real heroes are here - definitely the ones who repair children's hearts and not throw around a ball, but I thought it was a nice gesture anyway.

I realized that only in the pediatric floor of a hospital, sitting there with your child, can you feel so grateful and ungrateful at the same time. There are many times when I've caught myself thinking that we've seen so much bad stuff this week and I'm so glad Sofia has been in such good health, but then I've also thought how unfair it is to have a chronic condition. In the world outside of the hospital setting, I think these thoughts are pushed to the back a little better because we are just living our lives, but on M40 it's hard to ignore.

Say a special prayer for Sofia tonight that her lungs improve and we can bust out of here soon. I'm not sure how much more I can take of the snoring baby, the crying baby, the blaring t.v. and the beeping machines. :)

These guys were very nice - and big. Evan Moore is tall.