Monday, May 31, 2010

Not Much to Report

Which is a very good thing.

C is not in the hospital now for any reason other than waiting for GI to come and place the feeding tube. Supposedly they are going to place the feeding tube on Wednesday. Of course there is always a chance that will not happen and they do not get around to placing the tube until Thursday or Friday. We were really pushing for Tuesday but they said they just could not get her on the schedule for Tuesday. Don't know why, but that is what GI said.

So, we try to be as normal as we can while living in a hospital which does not allow for any kind of normal living. C is out of her normal environment and off her normal routine. She cannot leave the hospital and only very recently has been allowed to actually leave her room. Getting out does help everyone's sanity. Unfortunately with C being in a cardiac ICU we just cannot have the parade of visitors that we would so welcome to help break up the tedium. Back here in the ICU they get a little particular about allowing in germs and such...gee, I wonder why? Anyway. Living in a hospital is really horrible. Especially when we are living here only because we have to wait on getting a relatively minor and easy procedure done. I guess this is the penance we must pay for being so stubborn in the first place about C getting a feeding tube. If we had moved forward with this 5 months ago, shoot, we would be home sleeping in our own beds tonight. Instead, I have been listening to C whine and cry for the last hour because she does not want to be put down in the hospital crib, she is all hopped up on the 15 different drugs she is getting every hour or so because they all have different times they must be given, she hates the nurses messing with her (and for some unknown reason the doctors still want vitals checked every 4 hours...they already know her blood pressure refuses to drop much below 90 and hovers around 100...continuously, for the past 48 hours, on the same drug schedule...grrrrrrrr), she has been annoyed the last hour because the stupid blood pressure cuff does not work and the nurse keeps trying to take it, and of course just when she stopped screaming and actually went to sleep (2 hours past her normal bed time) the nurse comes in to move the stupid cuff because it is not working and wakes her up and she starts crying all over again...and for some completely unfathomable reason the cleaning people must empty the trash in the babies/kids rooms at 10:30 at night. Seriously. Hey people, the last time I checked my daughter is no longer all drugged up on fententyl and versed and living in sleepy land 24 hours a day. We are trying to be as normal as possible, per the doctors, but you are all

Can you tell I am a tad frustrated. And this is my first full night here. Stupid hospital.

I have no problem with most of the above (with the exception of why it is absolutely critical to get the trash in the middle of the night, disrupting sleeping babies/kids), the doctors and nurses are just doing their job after all, however, it makes it very hard to tolerate when we are only here because some other doctor just can't quite get us in the schedule.

So here we sit. And wait. For something that everyone tells us is so darned important yet apparently not important enough to do, you know like today. All the other doctors were here today. Apparently the GI's had better things to do. Can you tell I am really not liking the GI's right now. And just so you all know, this is the same group that we have been seeing, the same group who supposedly understands how critical it is that C get her feeding tube.

Breathe in.....breathe out....

Sunshine and rainbows....


Kevin is back at home with the boys. I am sure they were ecstatic to see him and be back in our home. Got to talk to them briefly tonight on skype. C got to see them and blow kisses. She so loves them.

We are hoping that we can be discharged Friday. That would be the earliest if all goes to plan and goes well. Here's to hoping.

All My Fault

(Yesterday, Sunday, May 30)

Ok. So sorry for the lack of updates for the past two days. For those who do not already know I have been horribly sick the past 2 1/2 days with what I am pretty sure is food poisoning. Truly horrid....and I hate vomiting. I was super concerned I might have rotavirus which would have really sucked because then I would have been out of C's room for a VERY long time. But, with food poisoning once it runs it course it is gone and I am allowed back in her room.

I was so very happy and excited to finally see C again.

She looked like a different baby to me at first.

She has scabs from where the tape has burned her face and neck. She is so thin, including her face and head (no longer puffy). She has bruises and cuts and pokes and scrapes. Her eyes are a little bruised.

And yet, she still looked beautiful.

She has had to fight a little harder this time but she has made it through. Her blood pressure still remains a little high, even with all the medications she is receiving and in turn her lung pressure is still a little high. However, her heart is functioning very well and her flow remains good. Her sats are a little lower than that what we have been used to but that is to be expected. She is finally running where she should be but it will take us a little to get used to it.

I think she would more than likely be discharged tomorrow but because of her eating and our insistence on getting a g tube this time we are stuck her for a bit longer. The timing on this has been totally off. Due to her not hitting her stride in her recovery until the end of week and then this being a holiday weekend, the earliest she can get the tube placed is Wednesday. Ugh. If she gets the tube Wednesday, then she will not be able to use it until Thursday. Then the observation to make sure it is working and she is tolerating it. So, the earliest we are getting out of here is next Friday. We so did not want this to happen like this but oh well, we do not have much choice now. I talked with the doctors this morning and they all agree it will be best for her to stay then to go home and come back. They are afraid that if she goes home then the GI docs will not have a sense of urgency about getting her tube placed and it could be weeks before we can get scheduled.

Plus, the benefit of staying here is that C gets to have my favorite intensivist help with her procedure, do the sedation and she gets to have the whole thing done in the icu where if there is a problem everyone (including cardio surgeons) can be here immediately to help her. So, while it is totally stinky to have to live in the hospital for another week, this will be the best option.

C's eating is getting better. Still not where it should be but better. And she is still not vomiting. Yay for small steps!

We do have a little more freedom now. C has absolutely nothing hooked up. All her lines are gone. Her last remaining iv blew yesterday so they took it out. She still has her ekg leads on and her pulse ox on but she does not need to be hooked up to the monitors all the time. She only needs to be hooked up for the nurses vital checks and at night when she is sleeping. So we are able to walk around a little bit. At least it helps to get out of the room a little.

Kevin will be going back home tomorrow to be with the boys. They have been having a blast with Kevin's parents, who have been sweet enough to put up with them for the past week. I miss them but they have been doing well and having so much fun with the start of their summer vacation I am not sure they have been missing me any! Will be so very happy when we can all be home together soon.

Thank you again for all the prayers for C. I know they have been heard. C is here today and is back to her old self. She has not lost one little thing. She is still babbling, smiling. laughing, sitting up, scooting around, calling me mama and Kevin dada, chewing on everything, playing with her toys and in general being her normal self. I am so very, very relieved. I was so very scared that even if she pulled through she would lose something and I think one of the hardest things to deal with is watching the lose of potential. Seeing what you could have or did have and just watch it all disappear. But, I have not had to do that and I am forever grateful that we have more time with C.

Thursday, May 27, 2010

Still Taking Steps Forward

C did well last night even if she did not get that much sleep. Poor baby is so gunky in her chest, throat and nose from being on the ventilator and she is having a hard time clearing it out. The nurse has had to suction her nose and throat several times and she hates it. I don't blame her one bit, I would hate it too. It just looks awful. Even worse, the first two times she stopped breathing as if she had gunk caught in her throat. Very scary. Her lips turned purple and her sats very dropping. She finally cleared it and was fine but still horrid to watch.

She was able to start eating again last night and so far she is doing pretty good. She is taking more than she usually does but still not up to what she should be taking. We are taking it easy on her right now because she does still have lots of stuff going on.

C is continuing on an upswing but it seems to me that it is much slower this time. Maybe I am just not remembering the last surgery very accurately but she seemed to be more her normal self at this point last time. I guess I am just worrying too much (and impatient to get her home!) and she will continue to make slow progress. Progess, even slow, is so much better than the alternative and I will learn to have more patience.

Everything seems to be pretty good so far. The only issue she is having is that her pulmonary pressure and blood pressure are still on the high side. She will be getting her normal blood pressure med and she will be getting Viagra now as well. I know if sounds weird but Viagra was originally used to help people like C who need some help with relaxing all the vessels and stuff in the lungs. Yesterday the cardiologist was talking to me about it and she did not think C would need to be on it permanetly but we will see.

C has been taking a nap this morning and resting so I am hopeful that means she will start feeling better too because right now she just seems so miserable. I can hardly stand watching her look so darn miserable.

Thank you all so much for all of your prayers. I know that they have really made a difference. I was very scared two nights ago that Carolena just may not pull through as she was struggling so hard. I can only thank all of you and of course God for seeing that C really wants to be here with us for awhile longer. I can honestly say I have never been more scared since this journey with C began. I am very humbled to know so many are following C's journey and are touched enough with her and her story to keep praying for her. She is truely amazing and I wish everyone could see how beautiful, sweet, happy, playful, smiley and engaging she is.

Wednesday, May 26, 2010

Moving Forward

C is off the ventilator. That is correct. She is off the ventilator. She was aggressively weaned down all morning and once the intensivist thought she was awake enough and breathing on her own enough he went ahead and pulled the tube. She needed a tiny bit of stimulation to get her going but she has been doing good ever since. I thought for sure he would make me leave but he said I could stay and help hold her. He said he would only ask me to leave if he had to do some further action like bag/mask or even reinsert the tube. I got to tell you, these doctors have nerves of steel. I was pretty terrified of what C was going to do once her tube came out and at one point I did walk out of her room. But, I went back in and stayed with her and got her to settle down and go back to sleep.

She is currently sleeping pretty peacefully. She does have a nasal canula and is getting oxygen and nitric oxide through the canula. She of course hates the thing blowing in her nose but I keep telling her it is A LOT better than a tube down her throat. Her narcotic pain med drip has been stopped (the fentenoyl) and her sedation drip (versed) has been weaned down. The doctors want her to start coming to and waking up. Get back to her normal self. Her foley catheter was also removed so she is peeing all on her own. Next step will be to see if she will eat. Doctor has not mentioned it yet but maybe tomorrow. She still has a long, long way to go but I think we have turned the corner and C is on the upswing.

I cannot even tell you all how much your comments and prayers have meant to me and Kevin. At some points in the night, reading all of your comments, and knowing how many people where sending up prayers on C's behalf was the only thing keeping me from completely breaking down. Yesterday was a very long day, I think Kevin, me and mom were awake for 20 straight hours. Hopefully we can all get a little more sleep tonight.

Tomorrow is Another Day After All...

If you were following me on Facebook last night you already know that C took a major downturn early last night. Her sats dropped, she was on 100% oxygen and she was still struggling. Even with the vent all the way up she could not maintain her sat level around 75-80 like the doctors wanted her to be. She was sedated more and more (she is still so very, very stoned) and yet she still struggled. I was very scared.

She got another blood transfusion, lots of warm blankets and some changed vent settings that actually stabilized her. When I left around 12:45am she was actually calm and stable. Kevin stayed the rest of the night/early morning with her and she maintained her stable levels and actually improved. Poor baby is really fighting hard right now.

However, the doctors are all okay with her numbers this morning so aggressive vent weaning has begun, She has already been lowered to 60% oxygen on the vent and is tolerating it well. The next step is to lower her nitric oxide and see if she still tolerates it. Once that is lowered she will be extubated. The intensivist said it will be a high risk extubation for her and she may have a very adverse pulmonary reaction (ie turn really blue). If that happens he will immediately put the breathing tube back in and she will be back on the vent to try again another day. He wants her off the vent as quickly as she can be as the vent puts negative pressure on her Glenn shunt. So far she is tolerating the vent weaning very well. The key will be if her lungs have adjusted enough at this point to keep her oxygen sats up on her own. She will still be getting oxygen through a mask/nasal canula to help but she has got to do it on her own.

Other than this very serious issue with getting her lungs to cooperate with the lower pulmonary pressures she is doing very well. Her heart function is great and the repairs are awesome. Her chest xrays still look clear (no junk or infection setting in) and she is not running a fever. The best thing about getting the tube out and off the vent is that C will be able to be awake more and move around more. She will not have to be so sedated.

I am humbly asking for everyone to pray for a very successful extubation today. Not exactly sure when the doctors will be trying to pull the tube but will let you all know the results as soon as I can. I know absolutely that all the prayers being said for her last night pulled her through to this morning. C is fighting hard right now. Her body is doing the best it can. She just needs some extra help from all of you praying for her. Thank you all so very much.

Tuesday, May 25, 2010

In C's Room

Been with C now for 2 hours and she is stable. She is still on the vent and will be for at least tonight and well into tomorrow. Her lungs needs to catch up. The increased pressure she has been living with for the past 5 months causes there to be residual "memory" in the lungs. The doctors are all thinking that her lungs will start to respond to the new lower pressures and lower blood flow. Once her lungs catch up and she does not need so much O2 and NO to keep her sats up she will be extubated. I will be praying really hard tonight that her body and lungs start responding so she can get moving on with her recovery. I know it does not seem like it but C is really sick right now. One of the doctors mentioned he was really surprised she had gone so long and done so well with the pulmonary obstruction and elevated lung pressures. Not really what we want to hear right now but it just reminds me that C is not a normal baby. She is unique, different, complicated and she is so beautiful. I hate that her pretty blue eyes are so drugged she cannot even pull them into focus but I know her body is getting the rest it needs. I will be so happy when I can see recognition in her eyes again.

I know we have said it before so please excuse me for repeating but these next 24 hours are so very critical. This first overnight period is so iffy. Right now she looks like she is doing well but we know that it can change quickly. Kevin and I will be taking shifts tonight so she will not be alone. Even though she is out of it, she is aware and knows we are here. I do not want her to be scared on top of everything else.

Thank you all so very much for the prayers, positive thoughts and good vibes being sent her way. C is one tough little girl but we know she cannot do this alone. I am very grateful for every single one of you and all the prayers you are sending up on her behalf.

C is in Recovery

and doing well. Her heart is functioning fine. The scar tissue turned out to be membrane and not tissue. The surgeon is not exactly sure why it formed but he went ahead and removed it. He also removed her pulmonary artery from the heart. Her sats are running a tad low right now. The surgeon thinks because she has had high pulmonary pressures by now removing that pressure will keep her sats lower for a little while. He expects her sats to rebound back to her more nomal levels after a few days. He did say it could take a month. There is a very good chance she will be intubated for a little while so the doctors can control the level of oxygen in her blood. I am praying she will not have to stay on the vent long but it is all up to C. Everything else went well. Thanks so much for all the prayers and good thoughts. Please keep them coming as the next 24 hours will be critical, not only to get her off the vent but to also not have any clots, strokes, etc.

Repair Done

C's surgeon is done with the repair to correct the pulmonary vein obstruction. The cardiologist has done the TEE and says all is looking good. Right now they are getting her off of bypass. She is still holding her own and doing well. Still need her heart to start beating on her own and then surgeon will come up and talk to us.

On Bypass, Surgery Started

I know it sounds confusing but the last hour has been the sugeron just getting through the adhesions and scar tissue from her previous surgery. C is on bypass and the surgeon will now do the fixing of the scar tissue in/around her heart that is causing the pulmonary vein obstruction. She is still doing well. Please keep the prayers coming.

C's lines are placed

C's lines are placed. She is sedated and intubated. Her surgeon just made the incision so from now will be a few hours. So far, so good.

Please keep the prayers coming.

Thank you.

C's in the OR

The nurses took her back at 7:30am. The nurse will come out and let us know once surgery starts. She needs to have all her lines placed and sedation done. Not sure how long will take but we think at least an hour to get all that done.

Thank you all for the prayers. C needs them today.

Friday, May 21, 2010

A Post Just for My Memories

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 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.

And the Other Shoe Drops

I think this is what I have been waiting for and dreading. I am not typically an optimistic person. I do not always see the glass as half full. I do not think I am a particularly negative person either. I certainly do not walk around all day, every day lamenting that the sky is falling. I believe in reality. And the reality today is that C will be going back into the OR May 25 for her second open heart surgery.

All along, from the very beginning, all I have wanted for C is for her to enjoy her life. Have fun, be loved and pampered. Hugged and kissed so much that so begs you to stop. To get a chance to be a "normal" baby, toddler, child, teen, young adult and hopefully more without having to constantly worry about what next. My biggest fear has always been that all she would know and remember would be pain and suffering. I have never wanted her life to be dominated by scary things and pain. I have prayed over and over for something very simple...please God, do not let her suffer.

C has been home with us for over 5 months since her TAPVR repair and Glenn. She has been happy and content. Until recently.

Unbeknownst to us, she has been growing insidious scar tissue from her TAPVR repair. Enough scar tissue that she now has pulmonary vein obstruction. Our first inkling that there was a real problem with her heart was 3 weeks ago at her cardiology appointment (well, that and her continually crappy eating which kept us going to the cardiologist and GI doctor). She was originally not scheduled to get an echo. Kevin insisted. C's cardiologist saw something of concern. We scheduled an appointment with the invasive procedures cardiologist. He scheduled a cath and C underwent that procedure May 17. He originally was not expecting to find anything big. He did think he would find some small issues and did prepare us for that. We were not as prepared for an immediate admit and that she needs surgery as soon as possible.


The shoe hit my head.

I am not mentally prepared for her to have to another open heart surgery right now. She was supposed to be good. No more surgeries until her Fontan around 2 years of age. She is not supposed to have two open heart surgeries before her first birthday. But, she will. Originally I was prepared for C to have two surgeries. She was possibly needing a BT shunt and banding. But she did not need it. She was possibly needing to have her TAPVR repair first and then her Glenn a few months later. But she had them both in the same procedure. So, really? Scar tissue? Seriously? Scar tissue?

There is really nothing that could have been done to prevent this. It just happens. Not exactly rare but not exactly common. Totally sucks.

I have already had my day of self pity. The day of my self pity I was not choosing to be positive, because damnit, this is not fair. But from now on I will be positive, scared out of my mind, but positive.

C was admitted to the hospital Monday on the hope that she could have surgery Tuesday. But, her surgeon has been and still is super busy with surgeries this week. Unfortunately, there are a lot more much sicker babies than C, and knowing that breaks my heart. So, in the interest of keeping us all sane, the doctors all agreed that C could go home until her surgery. Keeping us in the hospital on the chance of a surgery spot opening up was not doing any of us any good. However, keeping us in the hospital for a couple of days did prove to be the best thing since C swelled up like Jabba the Hut after her cath. The pressure building up in her lungs because of the vein obstruction, plus the blood flow going to her lungs from not one but two sources (her pulmonary artery is still connected to her heart) has been causing tons of fluid build up and pressure build up in her Glenn. C is on Lasix now and has gotten rid of pretty much all the fluid.

We all got home Wednesday and have been trying to have as normal a life as possible until next week. C missed home. She missed her brothers. She missed everything about being a "normal" baby. I pray that she will return home with us once again so she does not have to miss any of these things permanently.

Wednesday, May 12, 2010

The GI Update

C had her appointment with the GI doctor yesterday. This is appointment number 2 in the ongoing saga to figure out a way to get C to eat and gain weight.

We chose to go back to the third of the five GI doctors we have seen. Breaking from our typical fashion, we chose the GI who is the youngest of the 5 we have seen. Generally Kevin and I pick the older doctors because we feel more comfortable. I know, just because they are older does not mean they are better. However, our experience so far has been the more time the doctor has been, you know, an actual doctor, the better. Of course there are always a few exceptions. One exception being C's total rock star surgeon. Adding to my reserve in picking the younger GI doctor is that I learned from the first time I saw him that he went to the same high school as me. Although we were not in school at the same time, he is close enough to me in age to make me feel weird. Don't know why, maybe I am just get old.

Anyway, the GI doctor is actually good. Both Kevin and I are happy with his thoroughness and his actual listening and talking to us. We now have a new plan to proceed with.

1. We are giving C Miralax. This is a stool softener/laxative to help her with her seemingly endless, horrid constipation. The GI thinks C has associated lots of pain with trying to have a bm and now will not go because it hurts and the more she does not go the more it hurts. A total vicious cycle. Hope that with the laxative she can get some relief and learn that it is ok and not terribly painful to have a bm. Here's the catch...there is always a catch... the laxative powder has to be mixed at the rate of 1tsp per 1ounce fluid. For a normal baby not so bad...for a baby who flat out refuses to suck off a bottle or a sippy cup and has a huge problem taking a lot of fluid volume in the first place, this shall prove to be near impossible. She is prescribed to take 2tsps of powder mixed in 2ounces of fluid twice a day for a total of 4 additional ounces of fluid. If we could figure out how to get C to drink 4 ounces of fluid off a bottle or sippy we would not be seeing the GI doctor at all because C would be intaking enough volume and therefore gaining weight like she should be. We are trying to figure out the best way to get this in her.

2. The GI did suggest upping her Prevacid to twice a day which would mean giving her a full adult dose. Not too sure about that. And we are following the advice of the GI at Shands who told us to make only one change at a time. So, we are trying the Miralax first. The reflux continues to be an issue of does she have it or not...because she vomits and exhibits other classic signs the docs all learn towards yes but C continues to baffle because she shows no internal signs of reflux based on all the GI tests we have done. Gee. C baffling. Tell us something new.

3. The GI doc did a brief rectal exam..yes it looks as unpleasant as it sounds...and he did say that everything there appears normal. He does want us to do a sacral ultrasound because C does have a swirley dimple thingy right at the top of her hiney. He does not really think there is an issue but just wants to check to make sure her spinal cord is not all screwy down there.

4. And the big one...C is being scheduled to have a G feeding tube placed. If there is an upside to this here it is...the tube will be placed endoscopically by the GI doctor. Although C will have to undergo anesthesia again she will not have to have another abdominal surgery. The GI doctor will insert the scope down C's throat to get to her tummy. When he sees a good spot for the tube he will insert the tube through the skin in the tummy. He explained it as similar to an earring. The tube will loop through the skin into the stomach. This is called a peg button. I will stop here as trying to explain the whole thing is just confusing. Suffice it to say that this is the easier way to have a tube placed. Of course this is dependent on cardiology saying okay to this type of tube and tube placement. Originally C's cardiologist wanted to have the surgically implanted tube and also a Nissen wrap fundoplication. I am so not on board with the wrap. Lets just say it is like tying the end of the balloon up so nothing can get out...C would not be able to vomit. I have read all kinds of horrible side effects from this and do not want to have this done to C. The cardiologist recommended it because of the vomiting. He does not want to risk her aspirating. If she aspirates, she dies. Aspiration is breathing fluid/food into the lungs. The thing is, not one doctor or therapist (and we have seen and talked to many in the realm of the GI world) thinks C has any risk towards aspiration. In addition, because C shows no damage from the reflux and there is still debate on whether she actually has it or not, the GI doctor does not recommend the wrap due to reflux. C's pediatrician is also against doing the wrap. Now we just have to see what her cardiologist says tomorrow. If GI is able to get clearance from C's cardiologist and the cardiologist is okay with her doing this so close to her already scheduled heart cath on May 17, C could be going to the hospital this Friday, May 14 for the placement of the feeding tube. It will be an admit with an unknown time for discharge. I will keep everyone updated on how the schedule works out and when C will be going to the hospital for the cath and the feeding tube.

This email is already way longer than I wanted. I have another whole email I could write about how I feel about all this but I am pretty sure I will spare all of you and just put that up on my blog :) Needless to say I am very unhappy about having to miss out on the wonderful birthday festivities my husband had planned for me this weekend and I am very sad that after almost 9 months of my little HLHS baby being one of the few to not need a feeding tube we are getting one after all. However, I am VERY happy that C's body will finally be getting what it needs to grow and thrive. And that is what this is all about.

Thanks again for all the prayers for C. They are working. And for all who do not know yet, C has her very first tooth. She has the cutest, heart melting, snaggle tooth smile now.

Monday, May 10, 2010

One Down, Two to Go in Search of Better Eating

C had the first of three appointments stemming from her last cardiologist visit April 22. We met with the invasive procedures cardiologist (my own made up title for this doctor) this past Friday. After reviewing the info from C's main cardiologist and talking to us about C's eating, he wants to do another heart cath. C is scheduled for her cath on May 17 at 9am. We have been told to expect at least 3to 4 hours for this cath. The cardiologist will be looking at every little thing going on with her heart. There is still some thought there may be some obstruction on her pulmonary veins. If there is I am really hoping he can fix this with a cath. If he cannot then C will more than likely be scheduled for another open heart surgery.

However, before I continue on, I must make clear that this is all still speculative. C's main cardiologist and the cardiologist we saw Friday are not 100% sure there is an issue with her pulmonary veins. The cath will tell us for certain. Also, even if there is an problem that needs to be fixed with surgery versus during a cath then she may be able to wait until her next surgery around 2 years of age. So, there are still a lot of unknowns at this point and as usual, everything remains very fluid.

Tomorrow, we take C to see the GI doctor again. Kevin is concerned that the GI doc will be a waste to time in that the doctor will tell us he wants to wait and see the cath results. So frustrating. I am hoping that will not be the case and he will actually move forward with getting the GI issues resolved, even if that means getting her scheduled for surgery to place a feeding tube.

Thursday we see C's main cardiologist again to go over all the new info from the other two appointments.

The goal at this point is to figure out the best way to get C to eat, gain weight and thrive properly. Cardiology is doing everything possible to rule out C's heart function as the culprit behind her crappy eating. Cardiology is still saying they really believe C's eating issues to be GI related but they are going to look at absolutely everything to make sure C has good balance as far as blood flow and function.

I have already been told that there may never be a real concrete answer to C's eating issues and therefore no concrete solution to fixing them. She has so much going on that each little bit that negatively affects her eating can all add up to one big problem and some issues, such as reflux, are things she will need to outgrow.

While we are not thrilled with having C undergo another heart cath right now we were expecting this to happen. She will go to St. Joe's in Tampa and we are praying that there will be no other issue with her heart and she will be able to come home that day.

Thanks for still keeping up with us and praying for C. I think about all of you all the time and am so grateful for each and every one of you.