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.

Day 6 - Tuesday

I feel like we're at a little bit of a standstill with Sofia's recovery. She still has her oxygen, chest tubes, and still has fluid around her lungs. She's still tired a lot and in pain at times. I think the pain is related to the chest tubes and the incision, not so much the gastro pains she was having. She really perked up last night, which was nice. We were able to wash her hair and put her in real PJs. She seemed to be in much better spirits than she was during the day yesterday. Her chest tubes are draining less fluid, which is a good thing. Really hoping she gets them out soon, but trying not to rush things. A Fontan surgery can be either fenestrated or nonfenestrated. If you have a fenestrated Fontan, the surgeon puts an intentional hole in the Fontan circuit, which is kind of a top off if pressures were to get high. The benefits are that the recovery is a bit faster. The downfall is that doctors often need to go in later, usually through a heart cath, to close the hold. And another downfall is that often the child is still blue (cyanotic). In the nonfenestrated version, there is no hole (so she is pink, not blue anymore) and as a result fluid can be a problem post-operatively. Sofia has a nonfenestrated Fontan, so the fluid that we're seeing is not unusual. Dr. Edwards, her cardiologist, stopped by as he has been doing almost daily. It was nice to have a chat about things. He is not the cardiologist on the floor this week, but he often stops in to see how Sofia is doing.

We learned something interested about the M-40 floor today. In a month's time, the whole "pod" area (I need to post pictures of the pod for those of you who have never seen it) is changing. They are expanding the in-house pharmacy and this whole area will become part of it. As a result, they will be losing patient beds and the only beds on the floor will be the ones that actually have doors. And apparently, this floor will also only be for peds cardiac patients. She has two noisy baby neighbors at the moment, so the thought of doors sounds very appealing. We have heard that if something opens up in one of those rooms, she'll be moved. I'm not holding my breath for that to happen though. We just have to suck it up and hope that our stay won't be too much longer.

Sofia played a little bit in the play room tonight, which was nice. I'm not sure how she's going to do when Oliver goes home tonight and I stay. She is really used to her daddy being her with her all of the time.

When she woke up from her nap today I asked her if she slept well and what she dreamed about and she said "Oma's sandbox." She had tears in her eyes and I felt so sorry for her that she can't enjoy things at home right now. Oliver's mom just bought Sofia a sandbox and it will be set up for her when she comes home. She also got some cute finger puppets as a gift from Oma and we were playing with them yesterday. I was pretending I was the nurse finger puppet and she said, "Maybe we can ask this nurse if I can go home." Soon, baby, soon! I forgot my camera today, but will post more pictures soon.

Day 5 - Monday

Poor Sofia. We are trying our best to combat her sadness. She just seems so down today. She threw up twice, which I know is no picnic. She is still struggling with gastro issues, which hopefully resolve themselves soon. She is getting regular miralax. She is still on oxygen today because she is still desating when she's in pain. She doesn't want to take deep breaths because it is probably hurting her chest. She doesn't want to move around a lot today, which is discouraging. We took her to the play room and she didn't have interest in anything. Adelaide came to see her today. They have never been apart this long before. Trying not to get discouraged by today because it is just one day. Once these pesky chest tubes can come out and once her belly is feeling normal again I think we'll see our old Sofia come back. Can't wait.

This is the face of the day :(

but when I asked her if she was sad, she made this face. This picture made my day

Day 4 - Sunday

Sofia is pretty weak, but making progress. The doctors rounded this morning and Dr. Qureshi (the cardiologist) said that her chest tubes would probably stay in a few more days. It will be nice when these come out because I'm they are causing her some pain, as they are sewn in right now. She perked up today when Oliver arrived and we took a walk down the hall. She has had a little effusion (fluid build up) around her right lung, which apparently looked better today. Also, her liver felt better today after feeling enlarged yesterday. She is doing better on a reduced amount of oxygen, which is good too. When she is in pain she quickly de-sats because she's not taking good breaths. She got an infusion of albumin (protein) because her blood work showed a decline in numbers. She still had a little morphine today, and she she is on coumadin (blood thinner). She also got the dressing changed again today on her wound and her incision looks good. Her IJ (internal jugular)/central line came out today too. The risk of infection is not work keeping it in. She still has one I-V. The downside of having the IJ removed today is that for her daily blood draws she will now need to be poked. I'm glad Oliver came at the time he did today. I was solo all night, which was ok, but it was nice when he got here. Sofia seemed like she was becoming sad and she always gets excited to see her daddy. Also, I was starting to get irritated at some things related to life in the "pod." For example, please don't wake me up to ask me if you can weigh her at 2 AM. It can wait until she wakes up, given how restless sleep is around here. Also, at about 3 AM I couldn't fall asleep because I the doors to the hallway were open and there were 2 staff members chit chatting right outside her curtain (aka door) for what seemed like a long time, even though I know it was probably just a few minutes. I know it's the middle of the day for you, but is the middle of the night for everyone else around here, and it is really hard to stay in the pod for an extended period of time. I don't want to rant too much because overall things have been really good. I was just starting to get frustrated and Oliver is usually much less bothered by things than I am, so it was good that he got here when he did. Looking forward for more improvements tomorrow!

Day 3- Saturday

Saturday started out pretty well, but ended a little bit on the rougher side. Oliver had stayed the night with her on Friday night and had an uneventful night. She ended up staying in the PICU on Friday night, which we were grateful for. It was much quieter and apparently it was too busy in the step down unit for her to get enough attention, and because she was still de-sating they asked if we wanted to stay in the PICU on more night. I slept at home again on Friday night and drove back to the hospital yesterday. When I got to the hospital, Sofia was awake and very alert in the PICU. Looked very good. She even had gotten up and taken a walk down the hall to see the aquarium before I had gotten there. She napped on and off during the afternoon. Chris came up to see her, and I had driven Oma in with me so she had a nice time visiting. In the evening, she wanted to take another walk, but ended up wanting to ride in the wheelchair instead. Walking is encouraged at this point because she had a little fluid around her right lung and walking would be good for strengthening her lungs. Respiratory therapy is also coming a few times a day to do some exercises. After moving over to the step down unit, Emily and T.J. came up in the evening and Oliver left to go home and be with Adelaide. It was a nice visit, but Sofia wasn't feeling particularly well. She kept complaining that her side hurt. She ended up throwing up twice, which was kind of unexpected because she had been fine up until this point. She also looked pale and didn't appear to be feeling well. The step down unit is full and there is are crying babies on both sides, which are essentially separated by curtains (the dreaded "pod" area). A good night's sleep is almost out of the question. At about midnight the nurse woke me up because she had been de-sated for about 15 minutes and the nurse paged respiratory therapy check her out and she also paged the doctor. The doctor came and checked on her and wasn't too concerned with her sats. There appeared to maybe have been a kink the in the humidifier on the oxygen and when they got a new one, her numbers were better. He was a little concerned that she hadn't pooped yet though since surgery and was pretty distended. He gave her something to help with that and she was uncomfortable all night and was up for a few hours. At one point I asked her how she was feeling and she said "kind of awful." Poor baby. She kept falling asleep sitting on the potty too. Finally this morning after being able to go to the bathroom, she felt much better. Her color looks better and the resident said that they will be taking out one of the chest tubes today. I'm waiting to get the results of her morning x-ray to see how her lungs look today. Progress is slow, but I think we're getting there. She is such a good girl. Let's hope this mother's day turns out to be a great one.

see the resemblance? Sofia at 3 and a half

and Sofia at a few days old

getting ready for her stroll

with one of her favorite nurses getting some morphine before our walk

Day 2 - Friday

Our spunky and fiery 3 year old made an appearance today. She is weaning from the morphine, which will probably be totally off tomorrow and is on tylenol and something else that I can't seem to remember the name of at the moment. Her pain management has been really good. She doesn't seem to be in much pain, just discomfort at most. And that is mainly from being confined to a bed. She gets really fiesty when it comes to the nasal cannula that is giving her oxygen. She is being weaned off oxygen, but will desat (pulse ox drops) when it comes off so she still needs it now. She hates having something up her nose and I can't blame her. If that is the biggest of her problems, we'll deal with it. She has gotten pretty mad that we keep making her put it back in. Hopefully, she won't need it much longer. Her arterial line was removed this afternoon. She's eaten some food and had lots to drink. I think her chest tube drainage is at an amount that is to be expected. She hasn't complained that the area that they are connected to on her chest has bothered her, so that is good. She looks great. She has talked to about wanting to see a pink robot. She's so silly. She's hoping to see the therapy dog, which will be around Wednesday. I'm hoping to see home by Wednesday. We should be moving over to the step down unit sometime shortly this evening. She would have gone over earlier, but apparently it's been busy over there so they pushed back the time. That's fine by me because the PICU has been quiet and she has had good nurses. Actually, all the nurses have been wonderful. Dr. Stewart and Dr. Edwards both have dropped by today. Dr. Stewart says that it doesn't get any better than this, so we are glad that they are pleased with her progress so far. Post op recovery is slow going and she's doing well. There isn't much action (which is good!) and we're just passing the time and giving her a chance to heal. She is sleeping now and Oliver just went to grab some food so I'm just going to chill. It's hard not to reflect on past experiences in the PICU, which were not nearly as calm. I'll leave that for another post, but I can really sympathize with the families of the little tiny babies here. And it seems like there a lot of little tiny ones here now. Time and Sofia's good health have erased a lot of those painful days. I hope these other families are as lucky. Here are some pictures to end with...

I told her to smile, so this is her half smile.

This is the Gortex tube used to make her conduit...it is actually this big in diameter!

sleeping comfortably

Goodbye Blue, Hello Pink!

I'm pretty darn tired, but I wanted to write a quick update before I go to bed. Sofia did wonderfully today from beginning to end. We were up at the crack of dawn and surgery got underway pretty early. We left her in the OR t about 7:45. We got a few updates from the surgical nurse. Dr. Stewart came to talk to us at around 2 I think. Some of the highlights of surgery: she didn't t need any blood, she didn't need any heart meds post surgery because her heart was pumping so well, I got to keep a big piece of Gortex tubing that was used, and they finished up with a chest x-ray because there was an abnormal count (read: there was a missing needle and they had to make sure it wasn't left inside before they closed). We got to see her after she was extubated. She's on morphine, an antibiotic, and pepsid for her stomach. She stirred a lot and fussed a little, but for the most part she just slept. She has two chest tubes for drainage, which at the earliest will come out after two days if there is little to no drainage at that point. She communicated with us that she loved us, wanted her daddy, saw a robot cart in the hallway ( she was amused by one of these the other days and it must have made an impression), and was thirsty. She can't drink yet, but hopefully will be able to soon. I can't get over how pink she is! Her pulse ox was as high as 97 (she is on oxygen, but still). I have never seen her with such pink lips, hands, feet. She is in the PICU overnight, and they have mentioned she will go down to the step down unit as early as tomorrow. Sleeping is limited in the PICU, so we decided Oliver would stay with her overnight and I came home to be with Adelaide and get a good night's sleep. I will head up to the Clinic early tomorrow morning again. She should be more awake tomorrow and coming off the anesthesia. Grey's Anatomy is on in the background as I'm typing this and I just heard them mention a Fontan surgery. I am so glad we are now post-Fontan! So proud of Sofia. Such a strong girl! I hope she has a good night. Thank you everyone for all the wonderful gifts for Sofia and for us, they are truly appreciated, but most of all the good wishes and prayers from so many people!

Pre-Op

I'm going to try just to make this a quick update because it's already Tuesday night and I have a lot to do before surgery on Thursday! Pre-op went well today. We had to pre-register for Thurs. and then Sofia had to get a chest x-ray, EKG, seen by surgical nurse and cardiologist and get blood work. Things went pretty smoothly until the blood work. I'm pretty sure she had a trainee try to draw blood, which resulted in having to go to the other arm by a different person to get the draw. Poor Fia. She was screaming by the end of it. All was forgotten though when we stopped for frozen yogurt on the way home. We didn't really learn anything new while we were there. Their plan is to extubate in the OR, which is good. We have to be at the Clinic at 6:15 on Thursday morning, which means we'll leave around 5:15, which means I'll be getting up way before the sun comes up. We are almost there. I'm working on getting laundry done tonight. My mother-in-law comes in from Toronto tomorrow night, who will be watching Adelaide at home for us. My sister Kate is coming in from Pittsburgh tomorrow night and will sit and wait with us at the hospital on Thursday. My parents will come up to the hospital too. My sister Emily will come up whenever we need her. Thank God for for family and friends! Sofia received a lot of nice gifts and new things to play with while she is recovering and I know so many people are thinking about her. Will update more probably on Thursday during our wait. Say an extra prayer this week for Sofia.