This is a really long post and if you are on my email list, you have already read them. I like to go back and post these, as I write them when everything is still fresh. I do not always get to do that with blog posts. So, this post is really just for me to remember what was going on and when.
Holding Pattern - May 13, 2010
C saw her cardiologist this morning and he has informed us that we will not be getting a feeding tube for C for at least a couple of weeks. He wants to see the results of C's heart cath on Monday before moving forward with placing the g tube. We are not exactly thrilled that we have to wait a little while longer now that we have decided to move forward with getting the g tube but we are also wanting to see what the heart cath says. My understanding is that the earliest the g tube could be placed would be around May 27.
So. The plan as of now is for C to go to St. Joe's in Tampa, Monday, May 17 for her heart cath. Depending on what the cardiologist finds with C's heart will dictate when she gets the g tube. We are really praying hard that there will be no new issues found with the heart cath. Both cardiologists do not think we are going to find anything major and are doing the cath so we have a concrete answer as to her heart function at this time. Once we get the results either way then we can focus on getting her heart function correct then go on to the eating stuff or worry less about her heart (until her next surgery) and move forward with getting her gut issues all worked out.
And of course after all my fretting about C's cardiologist pushing for a Nissen wrap fundo procedure, he did not even mention it this time. I was kind of surprised but did not want to push the issue since he did agree when I said the GI doctor wanted to do the endoscopically placed g tube versus the surgically placed g tube (having the tube placed surgically would be done if the wrap has to be done too). Sometimes these doctors just confuse me. Oh well. At least it looks like we have one less battle to fight. Yea!
So now we return to our somewhat regularly scheduled existence with C's crappy eating and wait. Do de do.
Not What We Were Praying For - May 17, 2010
The results of C's heart cath today have determined that she will need another open heart surgery in the next week or so. C will be staying in the hospital until surgery and through recovery. This surgery is to re-fix her pulmonary veins that were repaired back in December. She has developed extensive scar tissue around the suture site on her heart that is causing critical stenosis of her pulmonary veins. This situation is the better of the two situations with pulmonary vein stenosis. Because this stenosis is caused by scar tissue from original surgery it can be repaired. However, there are still a lot of risks outside of just going through surgery again.
Right now we don't have a date scheduled for surgery but we will let everyone know as soon as we do. Thank you for all your prayers, love and support.
We Have a New Plan, Some Answers - May 17, 2010
Yes, C will still be going in for another open heart surgery.
No, it will not be this week.
Yes, we are devastated.
The new plan consists of her staying here in the hospital overnight and then being discharged tomorrow. She will come back to the hospital next week for her surgery. We will be meeting with her surgeon tomorrow morning and getting the date for her surgery. Kevin figured out that C was admitted today because the cardiologist doing the cath was trying to get her into the surgery as soon as possible and thought that since we were already here C could be admitted and have her surgery this week. Unfortunately, there are a lot more, much sicker, children than C already lined up for surgery this week. Fortunately this means that while C is sick she is not as critical as we first feared but it is still pretty bad.
Here is what is going on as best I can describe.
Back in December, C had two repairs done to try to get her heart to function as efficiently as possible. The one repair deals with her pulmonary veins. Her veins were emptying into a confluence (small extra chamber) under heart versus into her atrium where there are supposed to. Of course she does not have a functioning left side so, really the pulmonary veins did not have much choice but to try and attach to wherever they could. The repair she had done connected the confluence to her functioning atrium to allow the veins to dump where they are supposed to. What has happened is that where the surgery was done, opening up and reconnecting, has developed lots of scar tissue that is narrowing the veins. The veins are so narrowed that the blood flow coming through her Glenn is actually backing up and backflowing, causing her pressures to be way too high and her head to be puffy. The is also negatively affects her lungs. She will not have any long term damage as long as we can have this vein issue fixed or good as soon as possible. We missed that...we just thought all her weight gain was going to her head. Which, actually it has, but the difference in size between her head and rest of her body would not be as pronounced without this continued swelling. So, what the surgeon is going to do is basically clean out the scar tissue. My understanding is that this complication is not necessarily rare but it sure does not happen that often. The cardiologist is pretty confident (which is all we get here...no guarantees) that this will fix the issue. The sucky part is that he could not fix it in the cath lab and must be corrected surgically meaning C has to go through all the same stuff again: bypass, cracked open sternum, open heart surgery, chest tubes, arterial lines, central lines and pacing wires. All the super scary stuff again. And this time we do not have the same comfy feeling with C being in the best shape possible since she is so scrawny and does not have any reserves at all to fight anything should it happen.
So, while it looks like we will get to go home in the short term C will be coming back to the hospital next week. I am really hoping that C will be a total rockstar with this surgery as well and she will be able to be so strong and able to be discharged in one week again. Right now it looks like we will be having the surgery at St. Joe's in Tampa. Still a small possibility of going to ACH in St. Pete but more than likely we will be here at St. Joe's. As soon as we know the plan we are going with we will let everyone know.
I cannot even express to everyone how much all the kind words, good thoughts and prayers mean to us. C really needs the prayers. Each surgery is worse than the one before and there are so many further risks then the first time. I promise I am not trying to be so depressing but it has not been a great day.
In addition to all that is going on with C, C's great granddaddy (my granddaddy), is in the hospital again. He is 91 and is getting very frail. His issues right now are internal bleeding and the doctors are trying to figure out why. So... really this day has not been great. I am praying (and know) that tomorrow will be a better day. Tomorrow I will be positive.
And the News for Today - May 18, 2010
C is still in the hospital. She had a somewhat minor set-back last night and into this morning. Her face, neck, chest and arms all swelled really bad. Like Stay Puff Marshmellow, Jabba the Hut, taking way too many steroids bad. Her face and neck were somewhat swollen yesterday after the cath but nothing too concerning until this morning. Apparently the vein issue that was discovered yesterday along with all the fluids used during the cath have combined to create this huge amount of swelling. Fortunately her fontanel is still open so she had a small amount of relief but not a lot.
C was given a iv dose of Lasix (a diuretic) to help her pee off all this excess fluid. Yea for small things, it is working. Her swelling is decreasing but she is still swollen. Poor baby. She will continue on Lasix to help her get rid of the fluid.
Today we have seen 2 cardiologists, 2 arnp's, 2 pa's , one intensivist, and C's surgeon.
All agree that as long as C's swelling continues to decrease she will be discharged tomorrow. Let's all keep thinking positive that she pees and gets rid of this fluid. The plan is to let her go home tomorrow, see her regular cardiologist on Thursday, if something happens over the weekend, we bring her back to St. Joe's. Next Tuesday she will be back at St. Joe's for pre-op and she will undergo her 2nd open heart surgery on Wednesday morning, May 26.
Yesterday was all about the self-pity: anger, frustration, tear-hair out crying, cursing and saying "it's not fair!"
Today is all about being positive.
The good news is that the doctors did catch this through her cath. Her vein "obstruction" is related to surgery not due to a defect. Her lungs and the pulmonary veins going into them all look good and of normal size, so her lungs are good. She does not have any damage and if she did have any lung damage that will heal very quickly after getting her flow and pressures correct. Her surgeon thinks she will tolerate this surgery well and he has a plan to try and prevent this from happening again. He did not expect to see this scar tissue form but he has seen it before. This can be fixed.
We will be getting a feeding tube (g tube) for C prior to her being discharged from the hospital post surgery. She really needs the help and surgery will just set her back again. We all agree that it is time for C to be getting extra calories and we will make sure they get in her. The cardiologist that did her cath is very hopeful that getting her heart functioning the best it can (taking care of all the issues) will really help her eating. Kevin and I still think she has some GI related issues (constipation, etc) but with the g tube we can run all medicines through it and make sure she is getting everything she needs... such as the miralax to help get her regular.
C is one tough little girl and she is a fighter. She is back to acting like her normal self, minus her mongo head (and headache that comes with it). She is starting to actually sit up all by herself (and she is very proud of that). She is smiling and talking today.
Here's praying that she gets home tomorrow and we get a small break to gear up for her surgery next week. Sorry for the delay in updating but I was not prepared for C to be admitted to the hospital this time. One of these times I will learn my lesson and just bring everything. But, because I was not prepared (such a shocker for me since I am Miss Prepared) I do not have my computer and am relying on Kevin's work computer. Kevin has been trying to work as much of today as he can so I have not bothered him.
Thanks so much for all the prayers. We see them working for C every day. Oh, and C's great granddaddy was diagnosed early this afternoon with a treatable with medicine GI problem. Amen. He should be going home very soon. Let's all get C home as soon as possible too!
Sorry for the Delay - May 20, 2010
We are home. C was discharged yesterday around noon and after she finished trying to eat and we got all our stuff together we were out of the hospital. All the doctors agree that C will be safe at home until her surgery next week. The vein obstruction issue is a slow growing problem so we will not see any major changes over night but the issue is critical enough that she has to have surgery as soon as possible. Of course we do have our orders to call immediately if her swelling gets any worse or her breathing becomes extremely hard.
Lasik is a wonder drug. C is looking just about back to her normal self. She is still showing signs of swelling in her head, face, neck, upper body and chest. But, looking back now, she has been this puffy all along and we just did not really see it. Guess this does reconfirm that the pulmonary vein obstruction has been a very slow process with the growth of the scar tissue.
There has been a minor tweaking with the schedule for next week. C will be doing her pre-op work on Monday, May 24 and will be having surgery on Tuesday, May 25 all at St. Joe's in Tampa. We were hoping to do to All Children's but C's surgeon does prefer St. Joe's (even though he does not really say it) and we want to go where he is most comfortable.. The average stay post-op is one week to 10 days. If all goes as well as last time, C will be out in 5 days. That is what I will be hoping for but not what I am counting on.
For all who would like to know what the surgeon will be doing this time, here you go. C's heart and system are very complex (gee) and to try and get it all right takes a very fine balance. C's surgeon will be going back into her heart (her right atrium to be specific) and creating a much larger "hole" or space for the blood to be flowing through. Right now the blood flow back to her lungs is being done two ways. One, by her pulmonary artery (which is the normal flow we all have) and two, by her Glenn shunt (the first of two steps to reroute her blood flow to her lungs). When C had her surgery in December, the surgeon decided to leave her pulmonary artery attached to her heart because the thought was that her pulmonary artery was stenosed (narrowed) enough to not let that much blood flow through. And she was on the young side to have her Glenn done, being just under 4 months old (the time frame for the Glenn is 4-6 months of age). By leaving her pulmonary artery attached to her heart and allowing two flows of blood to her lungs has allowed her to not show any symptoms of this scar tissue build up. Her oxygen sats have remained very high for a post Glenn baby and she has not had any damage to her lungs. However, this has been creeping in and she is now showing the signs...hence the swelling, crappy eating and lack of normal weight gain...her heart and lungs are still working way too hard. So, the surgeon will go in and remove this scar tissue build up, try and do a suture less close (to help prevent future scar tissue build up) and also remove her pulmonary artery from her heart. Sounds pretty complex but believe it or not, this will be the easier, less complex surgery her surgeon does that day. Seriously.
All of the doctors are a little surprised by this but not at all unprepared for it. This scarring is not rare but it is pretty uncommon. Kevin and I are very glad she has not suffered any lung damage and although it will be extremely hard to hand C over to the surgeon again we know we will be getting a brand new C back. I cannot even imagine how much better she will be once this issue is fixed. She is a pretty happy baby right now. I told her that after this surgery is done, she will be so happy we will never see her frown ever (she is just that happy right now).
Of course there are all the same risks and complications all over again. She will be on bypass again. Her heart will be stopped again. She will have all the tubes and wires again. She will have her sternum opened again. Clots, strokes and embollisms are just waiting to happen. So, we are beyond scared. In some ways having already done this once makes it much harder to do again. I don't know why, you would think since we kind of know what to expect it would be easier, but it is not.
Good news, and here again we are hoping but not really expecting, is that the doctors really think her eating and weight gain will get better. We will still move forward to getting her a g tube (peg) so she can get some eating help (and boy does she need it) but with the goal of having it out of her as soon as possible. If her one cardiologist is correct, and she does what he would like to see, she will be eating like a champ in around 4 weeks and we may not need the tube after that. How cool would that be. But, we will take it one step at a time and see what happens.
Here is the best news yet. C has not vomited in 4 days. Not one bit at all. Yay! Maybe we are making progress after all.
Thank you all for all the kind thoughts and prayers and keeping us with us and C. This set back has been hard on all of us, including the boys. Todd gets scared and Kyle shuts down. We hate having them go through this again so soon but hoping that our prayers will be answered and we will all be back at home soon.