Wednesday, June 13, 2012

Because I am Still Trying to Find the Time

I decided I would go ahead and post my facebook updates for the last nine days C was in the hospital from her original admission, post Fontan. I would really like to go back and try to write out those days but I just do not see it happening. Each day the memory fades and the sharp emotions become softer. I do remember being very elated after C's post Fontan cath with the expectation that she would truly recover in time and she would not need any further procedures done and then hitting rock bottom as the days post cath dragged on and on and on with no real improvements and no discharge day in sight. So, here are the updates..and of course Blogger hates me so they are going to post in one huge paragraph instead of being separated like they should...grrr. Day 15 Post Fontan - Looking like Friday for discharge. Our super awesome NP last night was rocking on the changes to get C out of here. C is no longer on any iv/pump meds. Everything is oral (g tube) now. Still need to get pacing wires out but C's surgeon wants to wait until Friday as she just switched from iv amiodarone to oral (arrhythmia). Also need to get all the oxygen stuff ready as C will be on continuous oxygen for awhile. Otherwise she is looking and feeling good and ready to break out of this joint. Day 16 Post Fontan - C is still on track for discharge tomorrow. She is super ready to get out of here. She did develop some fluid under her heart that we are watching. Unfortunately Dr. Doom is cardiology tomorrow again. Hope he gets out voted by other doctors because he is the type to keep us here on iv drips until the fluid is completely gone which could take a month like the last two times C did this. Will be praying extra hard that the fluid is decreasing so we can leave. Also waiting on oxygen stuff. Put a fire under them today about that so it does not hold us up either. Day 16 (again) Post Fontan - Well so much for leaving tomorrow. Echo today showed a little more fluid around heart today than yesterday. Increasing Motrin and Lasix. Even if fluid is less tomorrow there is no way Dr. Doom will let us leave. Here's to hoping for Saturday. Day 17 Post Fontan - Well the earliest we are getting out of here is Monday. Not safe to pull pace wires while there is fluid present around the heart. So now need the Lasix and Motrin to work to shrink that fluid. Has worked before so really praying it will work again. Day 18 Post Fontan - Today added steroids to try and knock out the fluid around the heart. If these start working then we are still looking at Monday discharge. C is so over the icu and so am I. Still trying to get better answer about why o2 sats are still so low. Being told to just wait it out does not sit well, especially since having C on o2 24 hours a day is nothing short of torture to an extremely active 2 year old and a full time job holding mama who has to get this all figured out. Day 19 Post Fontan - No Facebook post. From timeline and pictures I can see that the boys were visiting so C was pretty happy and we were all just enjoying our short time together. Day 20 Post Fontan - And we keep taking steps backwards again. Have no idea when we will be getting out of here and I am no longer even going to guess. In addition to fluid around heart, there is more reaccumulating around her left long. So now on iv steroids and going back to iv lasix. Awesome. Both require wean/stability period as well. And to make things even more awesome C is having rate issues again with super slow rate most of the morning. That will also require med adjustment. I am beyond weary. Day 21 Post Fontan - The bad news, C is still running low heart rate, especially when asleep. Continuing to wait and see what she will do once the one med discontinued is completely out of her system. My fear is that she still go in atrial tachycardia again. But must trust her EP doctor to know what is right. She continues to be on one med for the rhythm/rate issues. Will see if it is enough. The good news, C's heart ...continues to show impressive function with little to no valve leakage. The iv meds are working and the fluid around her heart is decreasing. Enough so cardio put her back on oral steroids which she will continue at home for a little while. The iv lasix is also knocking out fluid around lung. Still will get that by iv for now but could start wean to oral soon. The best news, we spent 2 hours in the playroom doing crafts, coloring and painting and got a visit from Gracie, a therapy golden retriever. C was beyond thrilled to see a puppy. Really hope we are headed in the right direction and can go home soon. Need meds to keep working and no tachycardia arrhythmia. Day 22 Post Fontan - Another day with no Facebook post. There where a couple days where Facebook was also giving me problems and not posting my stuff. Of course I do remember just being so discouraged at this point it is entirely possible I just did not feel like posting anything. Day 23 Post Fontan - Well, looks like the big day is tomorrow. C should be going home. I have not posted sooner in effort to not jinx the good news. Everyone around here is in serious discharge planning mode. Although C's heart rate at night remains lower, it is not going a low as 3 nights ago. EP cardio is happy with where she is and is cautiously optimistic that the one med will continue to hold her rate and rhythm ...steady. The fluid around her heart and left lung continue to decrease so as of today she is back to receiving all her meds by gtube. C will still be going home on oxygen, 24/7, but her oxygen sats are starting to look a little better. I am very grateful and seriously humbled by all the family and friends (new and old) who have said prayers for C. Thank you. Hoping my next post will be pic of us heading south on I75. :) Day 24 Post Fontan - This was actually C's discharge day. I was so super excited to be getting out of the hospital and taking C home. But the elation is tempered with the knowledge that my child was still very, very sick. There is just such a dicotomy of emotions because you know you are going home but what does going home mean? I admitted my child on April 10 for her Pre Fontan cath. C was a bubbly, super happy, super content, mischievious, getting into everything, independent, smiley, could not tell her apart from any other 2 year child. I had the utmost respect and trust for the surgeon and the doctors and nurses who would be working on my child and taking care of her but in the end what I took home was such a pale version of my child that I hardly recognized her. She was weak and tired all the time. And now, now she looked like a medically fragile, special needs child. She has the evidence all over her face with the nasal cannula and the oxygen tank. She is much more subdued and quiet. I miss her vitality and energy and smiles and laughs and her words. She was just really starting to talk. I hate that she feels bad all the time and is concerned and worried all the time. I hate that she has to go through any of this. Our whole plan of cath and surgery back to back was to prevent her from having multiple hospital admissions. Trying hard to keep her from being emotionally scared as well. Too bad that has not worked. And here we are, nine weeks later and C is still limping along and all the doctors have pretty much run out of answers. We get a lot of "well, we just have to wait" and "I don't knows." Kevin and I have been seriously considering taking her somewhere else in an effort to find an expert in heterotaxy who can give us a second opinion. We may be there sooner now.


Sharron Johnson said...

Just so you know there are some of us out here still following your updates. Was just thinking of you all this morning in prayer so was happy to see an update even though the news isn't so great. Wish there was some way we could encourage you or ease your frustrations, but I know we can't. Just know that there are people all over praying for you, C, Kevin and the boys as well as your extended family and friends. I pray that God surrounds you with those who can help you best. Prayers also for those who didn't survive the Ecmo. May God pour His love and comfort over you all.

Jen said...

Ugh, sorry to hear that things are still so rocky. Thinking of you guys.