More Updates

Again from the email updates I have been sending out...

#9 - No News is Good News (December 12 - 5pm)

No news is good news...unless of course you publish newspapers. Well then I could see where that might be bad. C is continuing to improve. She is much more alert today and has been awake most of the afternoon. We are slowly getting her back to her schedule we had before her surgery. We do have her back on her normal eating schedule but she is still really skimpy on the eating. I am thinking the one thing that is going to keep us from coming home is her eating. How something so fundamental and necessary can be so hard I do not understand. Hoping maybe we can get someone over here to see C that can explain it to us and to help her out. The funny thing here is that C is not fussy and crying because she is hungry. She hardly ever cries or even acts hungry, She pretty much could care less whether she eats or not. Really very strange. Even more weird is the only time she ever really cries is because she is eating. She is only on tylenol and has been since yesterday morning. She is not in any real pain from the surgery but her head is still really achy from the Glenn procedure. With the Glenn, the svc from her head has been detached from her heart and reattached to her pulmonary artery. The blood from her head is now being drained via gravity. Therefore the pressure in her lungs must be lower than the pressure in her head. When she screams/cries the pressure builds up in her lungs and then the blood from her head backs up and she turns purple from the chest up. So, since her surgery was only 3 days ago her body needs to regulate and get used to the new pressures in her lungs and head. Therefore her head hurts because the pressure just went from like 100 to 10,000 (just made up numbers for effect). She had another echo this morning and the cardio doc said all is good. Her function is good, the repairs are steady and there is no fluid around her heart. The pressures in her head and lungs are good as well. Her blood pressure is still slightly high. However, we are still moving slowly toward the finish line (for now) and forward to getting discharged. She had her arterial line removed this morning and is receiving more of her meds orally instead of through iv. All she has left now are the pacing wires, the central line and two ivs. She is still on lasix which is a diuretic, primacor (a heart med), a med for high blood pressure (since it has not come down since her freak out yesterday) and now aspirin. This is in addition to her three meds for reflux and antibiotics for the no spleen thing. Hopefully she can come off some of these meds eventually. Our nurse today is really very cool. Kevin has gotten to hold C twice today and I have gotten to hold her once. She really does like to be held. Such a spoiled little thing. :) So. That has been the day. Keep sending good eating thoughts...hoping C will pick up the positive energy.

#10 - Oh Boy...Carolena is This Close (December 13 - 5:15pm)

to coming home! There is talk around her that we may be sprung tomorrow. Yes, you all read that correctly...tomorrow...as in 5 days post surgery. Whoa. Well, C only has one thing left in her. The central line. She managed to blow both her ivs in her feet this morning requiring them to be removed. Her pacing wires were just removed. Yea! But we have just learned that she needs to have an iv in order to have her central line removed. Dang it. C is not easy to get an iv into. So far she has had to be sedated each time to get just one iv in and even sedated it still takes like 12 times before one is placed. Horrible. Don't know what the consensus is yet but probably getting the central line out tomorrow after they put her through hell to get another iv that they will just remove 5 mins later. Grrrrr. The only thing she is still receiving by iv is the heparin (keeps the lines open) and lasix (the diuretic). Pretty cool that most of that stuff is gone now. Of course we have replaced the iv meds with oral meds. Way too many to list here but hoping some of them can be discontinued eventually. And to all the wonderful people who have suggested we get help with C's eating we have requested that speech therapy come by tomorrow to evaluate her. Have no idea what that means or what will happen but we are going to give it a go. Hope we can do that prior to getting discharged but if not we can do as outpatient. We will get a handle on her eating yet. But best of all....C is back to her old self. She has been awake all day and eating on schedule. Kevin had her dressed this am until she got some blood and pee on her outfit then he put her in her own nightgown. She has been laughing, smiling and talking today. She is not even screaming when the nurse comes through her door. Yea! Thank you for all of the prayers...C is a special little girl and we are all so blessed to have so many people thinking of us and praying.

#11 - Just in Case You Have Not Heard (December 15 - 10pm)

Carolena is officially home from the hospital. She was discharged yesterday around 2pm. Had to get all our stuff out of the hospital and the Ronald McDonald House and finally left Tampa around 4pm. We got to Fort Myers around 6:30pm with the happiest of thoughts until we tried and get her heart meds filled. What you say? Go to a 24 hour pharmacy? Yes, that is a great idea except one of her heart meds has to be compounded. Huh? Well, we are not as confused as some of you as we have already had to deal with this as C's Prevacid has to be made at a compound pharmacy. However, finding a compound pharmacy open at 6:30pm is near impossible in Fort Myers. Kevin finally called the hospital and found a Walgreensin Cape Coral (which virtually no chain pharmacy does compounding) that is actually a compound pharmacy. Whew! Pharmacist was super cool and actually filled her heart meds for us. Kevin spent 2 hours going back and forth until he finally brought them home. So, while I had the best of intentions of getting this update out last night we have been insanely busy since getting here. Now for the good news: 1. C was discharged 5 days post op...ridiculously fast for open heart surgery patient, especially having had 2 different procedures done2. Intensivist doctor, and I quote, said "she has far exceeded my expectations for being discharged this early. Amazing. We hardly ever get a patient out this fast"3. Cardiologist, and here again I quote, "she is a super star."4. Speech therapy came by and we learned that well, she has no oral aversion, sucks her paci just fine, can suck/swallow/breathe just peachy keen fine5. Her heart function is great, the repairs are great6. She is actually hungry. I know sounds backwards since unrepaired her heart was working so much harder but she seemed to never have an appetite and now she does7. Her surgeon is a rock star and is known for making teeny tiny incisions which C is now sporting proudly. Once healed you may not even notice it right away. The bad news: 1. She has HORRIBLE reflux...and this surgery with being intubated again has made it so much worse. We are starting all over again with getting her esophagus healed. Totally sucky She is in ridiculous pain and can hardly swallow without screaming in pain. We need to get it under control so she can eat and gain weight.2. She still has a headachy head from the pressure changes which is making her irritable3. She is a lot more blue in color all the time, again I know sounds backwards but with the Glenn procedure she will only run around mid 80's for oxygen saturation versus the 90's she was in before. After her Fontan procedure when she is around 2 years old she will again run in the 90's (we run 100%). All in all, we are so blessed that C has made it this far with as few complications as possible. Our doctors and the surgeon are amazingly talented but I know God has heard all our prayers for C and is answering them. She continues to far exceed expectations and is such a special little (and I mean that literally) girl. Here are some fun facts about C: 1. She actually likes her hair bows. She lets me put them in and does not mess with them, never even touches them.2. Even though I am not a huge fan of the color pink I am now as pink makes her look less blue.3. C loves to talk. She is super vocal and will tell you all about it.4. She must have 100 different smiles already and we love them all.5. She loves to hold her daddy's hand and will instantly calm when she can hold on to him.6. Her eyes are really blue, just like her brothers.7. Her hair is still dark brown, not blond.8. She has super chubby cheeks that make her look a lot bigger than she is.9. She loves her brothers and actually likes to sit with them and she will calmly watch them. I cannot express enough how grateful we are for all the love, support, prayers, shoulders to cry on, thoughtful bosses, friends and family. We would never have made it this far without the wonderful support system we have. Kevin and I were able to be with C the whole time she was in the hospital and we are firm believers that C is home because we (and Pappi and Aunt Janey) did not leave her side . We stayed with her to love on her, feed her, help control her pain, advocate on her behalf...and now she is home with us in plenty of time for Christmas. C has an appointment next week with her cardiologist. She does still have a very small pocket of fluid behind her heart they are watching. We are praying that next week this fluid is gone for good (if not, then we at least hope it has not gotten bigger...that would be bad). But, I think we will be okay. Thanks again so much. Much love to all...