Monday, December 21, 2009
C's echo this morning is still showing some fluid on one side of her heart. The fluid is decreasing just not as fast as I hoped. She is continuing to receive Motrin for anti-inflammatory purposes. The cardio doc told us this am that there are two ways fluid collects around the heart. 1) the capillaries are leaking (which of course she has like 5 risk factors for) and/or 2) there is inflammation allowing for fluid to build up. Because of the way C's effusion grew and the way she is responding to the Motrin the cardio doc thinks the fluid is being caused by inflammation. The inflammation kind is actual the better kind to have as it will go away quicker with less chance of coming back. So that is good news but still stinks it is not going away as fast as I like. The other thing holding C up is of course her eating. She really sucks at it. And of course it has gotten worse. This morning we met with the GI doctor here. He reviewed her info, checked her out, heard all the things we had to say and watched her eat. He still thinks reflux is the problem and wants to exhaust all medication options before doing any type of invasive procedure. Well, that's good. I'm all for no more invasive procedures if we can avoid them. The GI here was a little perplexed by the meds she was put on by the GI in Fort Myers. He has changed them around and we are hoping for good results. Since she is still here in the hospital and does have her iv, the GI doc is running her reflux meds through the iv to get maximum, quick benefit. Also, instead of three meds he has her down to two and these should work better for her. Here's hoping. The GI doc did not even mention feeding tube in conjunction with C other than to say they are the one who get called to consult on feeding tubes. I think this is a good sign that they think C will eat better once these meds really start working. So even though we are still in the hospital the news is not horrible. Seems to be the way things work for us. We get stuck in the hospital for things that are serious but not critical and end up being more annoying, frustrating and inconvenient than anything. The thought is that we will be getting out of here Tuesday. Just waiting on the fluid to go away and C to eat. Thanks for all the good thoughts and prayers. We are hoping to be home by Christmas.
Monday, December 21
Groundhog Day. Seriously. I feel like we are repeating the same day over and over and over again. It does not help at all that I do not leave the hospital. Never have the normal changes of the day. Much like a casino minus, you know, all the fun. C is back to her smiley, laughing and talking self. However, she is fast getting tired of this place and is as anxious as me to get out of here. The new reflux meds are having a positive effect. Will see how well they are still working once she has them in her system for a few days. I am really hoping this new mix of drugs will work for her. Today I heard the story of one of the nurses daughters. She is the third person I have heard from saying that the prevacid/reglan mix is what worked for their kiddo. I really pray that C will get some relief. Of course even with the new reflux meds we have added another tummy upset drug in the form of motrin. C is taking the motrin to help with the inflammation to get rid of the effusion around her heart. Go figure. Give on one side, take on the other. The echo this morning did show there is still some fluid by her heart. Much reduced from when we come here Thursday but still not all the way gone. All the doctors I have talked to seem to think that this trend of shrinkage will continue with the meds. C's iv started leaking today. Grrrr. She is such a hard one to get an iv in that all the nurses (iv team, baby iv stick specialists) around here know her by name. Fortunately the iv was able to come out without a new one going in. She is now taking all her meds by mouth. Her iv going bad today has actually helped us out. The docs all wanted to see how she would do with just oral meds. Of course this means she needs to be monitored. Yep. And I did not hear from the cardio doc all day. It finally took Kevin calling our regular cardio doc and paging the one here in the hospital before I saw the guy. So freaking aggravating. If C is not important enough to even be seen/evaluated today by the cardio doctor then why in the hell are we still here? Can't we do this kind of monitoring from home with visits to the cardio docs? Anyway, at least with the iv going bad she could start the meds orally and start the watching period Otherwise who knows when the cardio doc here would have done it. So, there is a slight possibility we could go home tomorrow but more than likely will be Wednesday. Still have a great chance of being home for Christmas. Yea! But also...oh crap. We have all the gifts for the kiddos but nothing is wrapped yet. Arrrgggghhhh. Anyone in Fort Myers want to come to my house and help wrap presents??? Pretty please? Does not feel like Christmas to me. Hoping once I get home I will feel the spirit. I know I say it a lot but I do really mean it...thanks for all the prayers for us.
Friday, December 18, 2009
Today the cardiologist reviewed her echo (after 24 hours of increased meds) and told us the effusion was decreased by half and he has rarely seen one decrease that much that fast.
So, she is doing well and is almost completely back to her normal self. Her eating is still crappy, but her normal crappy. Not the horribly crappy that she was 2 days ago. She is back to talking, smiling and playing. C is obviously feeling much better.
The plan right now is to see if the effusion will continue to decrease with only oral meds. The monitoring is pretty important right now since her very small effusion (fluid) on the right side of her heart very quickly surrounded her whole heart. The fluid around her heart is pretty bad...this puts pressure on her heart and can lead to heart failure if not corrected quickly. I think she will be only or oral meds through tomorrow and the docs will see how she does. IV meds work better and faster and she needs to have this effusion go away or be controlled by oral meds. If she does well then she may be discharged Sunday. Yea!
Tomorrow I will be going back to Tampa with the boys and give Kevin a break.. He has been with her since yesterday when I left to come home. We are really praying that she will be well enough to come home Sunday. Fortunately, all the repairs to her heart are good and functioning just fine. Even better we were told that she should be able to handle some normal infant crying/screaming. We had been pretty paranoid every time she started crying hard that she would damage her heart. Of course we immediately would rush to comfort her completely spoiling her. Now we can treat her a little more like a regular infant...:) She may not be too happy about that since she is very used to being held and cuddled every time she makes a peep.
Thanks again for all the prayers. I am continually amazed how quickly C bounces back and I know all the prayers are working.
Thursday, December 17, 2009
The good news is that the repairs that were done to her pulmonary veins and her Glenn procedure are fine. There is no obstruction visible on the echo and her cardiologist thinks all her grumpiness and no desire to eat will go away once the fluid around her heart is gone.
We are praying VERY hard that the meds will do the job. If the meds do not work then she will have to have a drainage tube placed until the body stops producing the fluid. This step can be done with minimal invasion in the heart cath lab but we really do not want to do this if possible. Unfortunately if neither of the two steps work then she will have to have surgery again in which they open her up. We really, really do not want that.
So for now C is being observed closely. She is doing okay and Kevin is staying with her. My mom is with them right now as well. I came back to Fort Myers to be with the boys. I cried leaving Tampa. By the time I got to the Skyway I was just numb. I hated leaving her. I know she is just fine with Kevin and she probably does not miss me as much as I miss her.
Best case, C will be home this weekend. This is what I am praying for now.
Thank you all again for thinking of us and following C's progress. I know this will be a very long journey with a lot of ups and downs. I hope this down turns out to be minor.
Tuesday, December 15, 2009
#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...
Friday, December 11, 2009
#1 - Carolena is in OR (December 9 - 8:20am)
Of course we were late to the hospital (got in at 6:15am). Go figure. But all is good since we did preop yesterday. Nothing to make C cry this morning. All the lines and ivs will be done after she is sedated. Thank goodness. We met with anesthesiologist and doctor before they took her back. The surgeon informed us that he may in fact go ahead and do her Glenn surgery today as well. He is going to repair the pulmonary veins first and then see what her pressures look like. He will decide from there whether to proceed with Glenn or not. Other than being surprised with this info this morning, Kevin and I are on board with doing her Glenn today as well. Keeps her from doing two surgeries before her 1st birthday and of course the fewer times they have to open her up the better. The surgeon did tell us that he thinks doing the Glenn today would not be an agressive approach and feels very comfortable proceeding if he is okay with her pressures. He thinks she will tolerate both procedures very well and should have no increased risk for bad complications. C went back to OR at 7:30am and the nurse told us it would be at least an hour before they even started surgery. C has to be sedated, lines placed, intubated, the echo done, switched to bypass and then surgery started. Nurse said she will do best to update us approx every hour.
#2 - Update from OR (December 9 - 11am)
Just got an update from the OR. Nurse says C is doing really well and that the surgeon is moving ahead and doing her Glenn procedure today. Great news in that she will only have one open heart surgery now (not the two we were being told).
#3 - Out of Surgery (December 9 - 1pm)
C is out of surgery and in recovery. She is doing well. We met with the surgeron about 20mins ago and he thinks she will do fine with recovery. She will have a swollen head for awhile. She may develop plural effusions, fluid in and around the lungs, which require drainage through caths until her body stops producing the fluid. She needs to eat as well or they will insert a feeding tube. Clots and strokes are still a risk as well. Please, please keep the prayers coming as they are working. C is a ROCK STAR!
#4 - Picture Soon After Surgery (December 9 - 5pm)
Still doing well. Little fluid around heart they are watching but overall, so far so good. Thank you all for prayers and keep them coming, still rough road ahead, especially next 24hrs.
#5 - Almost 24 Hours Post Surgery (December 10 -12:30pm)
And C is still rocking along! She does have pain but it is much better controlled now with a constant drip instead of the more traditional method of loading her up then wearing off. She is trying to be awake but can't quite get her little eyes all the way open. We did she her sweet little eyes a few times last night. I have a feeling when she really comes to she is going to be giving me the total stink eye. But, I will take what I can get. The doctors are starting to slowly remove some of her lines. She no longer had the oxygen reading thing on her head and back. The nurse is getting ready to take out the line in her neck. Each time a line comes out and nothing new goes in, we are one step closer to home. She does still have her chest tube, folio catheter, 2 regular ivs, 1 arterial line,1 central line and a nasal canuala (for small bit of oxygen). So, as you can see we still a have a very long way ahead of us. Hoping the oxygen can go soon and the nasal cannula can be removed. She really hates that thing blowing in her nose. Doctors are still very closely monitoring C. Her atria is still not quite firing correctly but they think only because she was disrupted yesterday. So, to help her out until her heart is 100% she is getting a little help from an external pacer. As the doctor said this morning, she can do fine without the pacer but it is helping so lets leave it for now and help her out. There is still a little fluid around her heart but the chest tube is still draining so it is not too concerning. Still watching her urine output and want to see more but where she is right now is too be expected. Also very closely watching her temperature. We do not want to have an infection set in and delay her recovery. Her breathing is still a little heavier than we have seen it but again, nothing out of the normal and too be expected at this point. Surprisingly her head is not as big and swollen and we were told to expect. I understand she could still swell a little more through the next 24 hours but after that she will have hit max swelling and start to recede. The swelling and the change in pressure in her head does cause her some pain and headaches but she is getting tylenol round the clock to help with that. Overall the doctors are happy with where she is. The intensivist said this morning that "her body is self-regulating. Pretty neat that she is doing on her own exactly what we want and what we would do manually with machines if she was not." Amazing. We may get to try and feed her later today, if not today, then tomorrow. I know she will be sooo happy to eat again. Talk to using a ng feeding tube at first but we are not exactly on board with that plan but we will see. I am very grateful to all our family and friends who are saying prayers for us. Even if I do not respond directly back to you, please know that I read EVERY comment sent back to us. If you have offered help, we will absolutely take you up on it when we need it. If you have said special prayers for us, we do see it. I am awed by the ones from the little ones who are praying for us. For such little kiddos they really seem to know exactly what to say. Like Carly's precious daughter Georgia who with no prompting prayed for God to "bless her heart." Thank you all soooo much. We are not out of the woods yet but keep taking baby steps forward.
#6 - 48 Hours Post Surgery, A Few Hours Ago (December 11 - 5pm)
C decided to keep things interesting this morning. Around 7am the nurses came in and started to remove things. C had her chest tube removed and her foley cath removed. In addition, her fentynol (pain meds) were stopped. Now, C does not like to be messed with. She gets upset when people are messing with her when she does not want to be messed with. Especially in the morning when she would rather sleep. She IS NOT a morning person :) So, she freaked out. Poor Kevin was here by himself when this happened. I was still at the RMH. C had terrible mottling. Mottling looks like a spider web over your skin, you can see all the veins clearly. And she started turning a horrible shade of purple. Her one arm was really, really bad. The doctors and nurses rushed in and started attending to her. The thought was she may have a blockage (or worse a clot) in her arm from where the anesthesiologist tried to put an arterial line. Or even much worse, that the heart repairs were not working and her heart was failing. So very scary for all of us especially Kevin because he was in here watching it. Doctors did an echo immediately. Her heart is fine. Repairs are good and her function is good. Did an ultrasound on her arm to check for the clot or blockage. Even without the official report from radiology the doc did tell us that there is flow to her arm so it is good. Did a chest x-ray to make sure her lungs are good. She was coughing and throwing up mucous this morning. But her x-ray came back fine. No pneumonia or fluid in/or around her lungs (plural effusions). Her blood pressure is still a little elevated but I have not seen any of the doctors in her room since I have been here. When you do not see the doctors you know you are doing pretty good. And, very good news is that she is still not running any kind of fever. Infections are a big complication so we are very happy to see that there is no fever. So. The short of it is that C is still doing pretty good. She has had her chest tube removed, her foley cath removed, her nasal cannula removed. She still has two iv's (one in each foot), her central line and her pacing wires. Even though she still has her pacing wires she has been off of the pacer since yesterday. Her heart is not 100% in perfect sinus rhythm but is very very close. Very good news. (The central line is kind of like an iv but the line goes through her chest directly into her heart. The pacing wires also go through her chest directly into her heart). She is now just on a diaper and is urinating fine. She has also had a poopie diaper which is a good indicator for letting her eat....which is the BIG news of the minute. I was finally able to feed C at 4pm today. She took 3 ounces of formula in 15 mins. I know that does not seem like a big accomplishment but, for a heart baby who just underwent open heart repairs that is AWESOME. We are still closely watching and monitoring C. She can still have complications arise but we are slowly getting to the other side. All of our prayers are working so keep them coming! Thank you, thank you. thank you...
#7 - So Much for Carolena Eating (December 11 - 11pm)
I was really hoping she would be eating much better. Oh how wrong I was. When the doctor finally gave the go ahead for her to eat and I gave her a bottle she took the whole thing down like a champ. I was really encouraged. Now two more bottles later and she is sucking...and not the formula. All we have heard from the doctors is that she will be such a different eater once she has her heart repaired, Even with just doing the Glenn (which is not the full repair) was really supposed to help. When we thought we were just having the vein repair surgery I was not too hopeful better eating. But having the Glenn is supposed to make a real difference. So far that has not been the case. Crap. I guess what is most frustrating is that we were actually making small improvements in her eating right before she came in for her surgery. Not all the feedings were great but we were definitely making progress. Now I feel as though not only are we not moving forward with better eating but we are actually moving backwards. Grrrrr. Have I mentioned how much I dislike trying to feed my ridiculously picky child in the hospital. She just won't eat and I cannot reason with her that if she does not eat then she will get a feeding tube. Which I know she will hate. With a passion. Really don't understand why I cannot just reason with her...;) The doctor did say that she would not eat any worse than she has been. Well, really? Because right now she is not doing it and that has just not been the way she has been eating lately. To me. that means her eating is worse than before. Maybe tomorrow will be better. Maybe she just needs time to adjust. Maybe if C understands just how many people are wanting her to eat then she will just magically start doing it. So. Please send lots of happy eating thought our way. C really needs to start putting the bottles down.
Tuesday, December 8, 2009
Of course she just charmed all the nurses. She was smiling and laughing and talking up a storm. She was telling anyone who would listen just what to do and how to do it. Such a silly girl.
Tomorrow we check into St. Joe's for her first open heart surgery. She will have her pulmonary veins worked on and repaired. We were really hoping that this vein repair surgery could be done at the same time as her Glenn but all the doctors feel having two separate surgeries is far less risky. So, we do this one now. Let her recover. Then do her Glenn in about 3 months.
Our day will be VERY LONG. We have to be at the hospital at 6am and she will be taken back around 7am. She will be sedated for the placement of all her lines including her ivs. Yea! At least she will not have to feel all the poking while they try and find access. She will have a transesophogial echo. Basically they stick a camera down her throat to get another look at her heart. Then she will be intubated (put on a ventillator) and be switched over to the heart/lung bypass. The bypass is because the surgeon will stop her heart so he can operate on it. Once the surgery is done another echo will be done and she will be (hopefully!) sent to recovery after being weaned off bypass. We have been told to not expect to see her until around 2pm and that she will still be intubated. Probably intubated for at least 24 hours after surgery. I hate that for her but she will be pretty much knocked out so her body can rest, recover and not be in any pain.
The average stay in the hospital post surgery is 10 days. She could be a total ROCK STAR (which we really hope) and have a much shorter stay,like 5 days. Or she could need some more time and we could be here awhile.
I know you have all had lots of requests for prayers but if you could say one (or 1000) for C tomorrow we would really appreciate it. We need her to keep being strong and a fighter. We also really need there to be no complications from surgery.