Complications & new friends

Grandma Martha

Hailey

LaWhitney

Well, for as well as the surgery went we have been plagued by complications. I must admit though none too difficult for my little warrior to get over. He has had chylothorax, a "possible" stroke from a blood clot on the brain, unending diarrhea from the portagen,  and pneumothorax. What a tough little guy to go through the ringer like that and still just want to play and smile at the nurses. He is nearly ready to go home though.  Just need to get this air pocket absorbed and we're out of here. We've meet new friends along the way.  Ones I am sure will touch my heart forever. The first was little Hailey.  Her grandmother Martha was the first to tell us our little monkey was out of surgery and doing well. She didn't know us yet, but she knew he was ours because we were the "newbies" in the waiting room. Funny after being here you know who is "suppose" to be there and who are the current day's surgical family. The grandma, as Vu and I affectionately call her, barely speaks english.  As we later learned, she is from Columbia, South America. We watched her spend tireless hours at her granddaughter's bedside and tried not to listen as she poured our her mother's heart to Hailey's other grandmother in plea for Hailey's mother to be physically closer to the baby during her time of need. Her eloquent choice of words pulling both mine and Vu's heart strings as we sat silently nearby.  I was so overcome with compassion and longing for my own mother to have that dept of feeling for me that I could not help myself but to have to tell her what a wonderful mother and grandmother she was. I doubt I will ever forget her loving devotion.  Then there is little Lawhitney. She's 14 months old. Has already had 2 surgeries and is in heart failure.  I first saw her when we were in our pre-op visit.  During our times in the same day observation unit, I have never seen the nurses do much nursing, just lots of coordination of various drs, & other services, some vitals here and there, but not too much other than that.  Well on this day, I saw a nurse hovering over this child, barely getting more than two feet away from her and watching her every breath. I knew this child was seriously ill. I heard the nurse do the best she could to try to have this sweet baby sent to PCICU and not the step down unit to no avail. During the 8 hours that we were there, never once did a family member appear to sit at her bedside. It was gut wrenching to think of how she needed to be holding her mother's hand at that moment and not see anyone there.  She was eventually sent to PCICU that evening. We were there three days before I saw anyone show up to visit her and by that time I had already decided to reach out to this little heart. I bought her a dress to wear and a crib toy. Not much, can't spare much especially when we have the extra expenses of being in the hospital.  I also made her a little name sign to hang above her bed or on her door. I gave it to the nurse to give to her, but she had been moved to the step down unit again. I later ran into her grandmother and was able to pass along the gifts.  I've learned that Lawhitney's mother is a teenage mom. Barely 15, I'd say.  That is only a bit older than my oldest daughter. They live a distance away from the hospital and in the next two weeks will have to go back home.  Lawhitney's mother will have to go back to school and her grandmother back to work and home to care for her other children.  Meanwhile this precious little girl must sit and wait for a new heart to become available. I had the chance to talk to her mom alone the other day and just reach out to her, share that every day her little girl is with her is a gift from God. We were both nearly in tears and I did want to go on, but Vance started to cry from the pain of his chest tube and I had to get him back to his room to lie down. I know I haven't seen the last of little miss Lawhitney. I'll be up here trying to hold her when her mother can't.

2nd Surgery

So Vance's second surgery went well.  He ended up having the norwood, glenn and coronary surgery all at one time.  That is a lot of surgery for a little body. No hiccups in the OR like last time.  They really feel the proximity of his left coronary to the pulmonary caused that when the band was placed by compressing it. His coronary was intramural (running through the heart wall) as they had suspected but it was not very deep or very long so removing it was not as complex as Dr. Bradley anticipated. Thank God for that one. Everyone is pleased with his post-op progress.  Of course we want to see the vent off asap, but we're going to wean slowly today and see how he does.  We've got him down to 20 on the vent currently.  Checking blood gasses hourly.  His BP was a bit of a concern and I noticed that they put him on pace this morning, so I guess they are having to make up for the fact that they are sedating him a bit heavier because of all his movement.  He wants to wake up now!  He's shaking his head no which is pulling at the vent and could potentially cause inflammation making it harder to breath so thus the drugs.  Such a fine line we walk.  Every little thing affecting the other. I couldn't be happier though.  I am so proud of my boy.  What a warrior in deed!!  More updates throughout the next few days. Thank you for the prayers and God bless all of you following Vance. The support helps so much. We are God's hands and I felt his touch through all of the messages we've received from all of you.

packing and getting ready

I have no idea where to start packing but at least we aren't far from home like many others.  today and tomorrow are going to be hard.  I am so anxious and on edge.  It's so hard to balance these emotions.  I want to be happy for Vance.  He's getting to move closer to having a normal life.  Yet there is this fear of losing him. It's not an overwhelming one which is encouraging. At least I don't feel like that at the moment.  I know what we're up against and that is probably the biggest hurdle.  Sometimes I wish I didn't know so much about this stuff and could sit in oblivion. He looks so cute this morning, sitting up in bed (albeit propped by pillows).  He's grown so much and become so precious to this family. Kaytlyn and I bathed him together last night.  He is really starting to enjoy the bath and it was a treat for both of us to watch how excited he got.  I couldn't imagine a day without him.  His little smile, his non-stop leg kicks and loud mouth.  My monkey is something special! I'm just going to count my blessings while pack some clothes. Back at it tomorrow.

The glenn has been scheduled

After waiting two weeks after the CT scan, we still didn't have a surgical date. His o2 sats kept decreasing and he was starting to sweat a lot.  It was obvious that normal play that was fine before was starting to cause fatigue.  All in all it didn't take much to know he was ready for the surgery, so Dr. Havachek said they would "push" Bradley's office into giving us a date.  Well, the very next day they called with the date.  Next friday, July the 16th which also happens to be Vu's birthday, so we'll be expecting to be celebrating a very big day.

CT scan results

So the scan went well.  Dr. Havachek said he has some narrowing in the coronary that will also have to be repaired along with the additional arch work to the aorta. So not just the glenn but two other things as well.  This is gonna be a rough ride.  But at least we're ready and waiting for the next surgical date.  Everything else is done and ready. Holding our breath until then.

preparing for the next step

His PA bands are getting too small now.  His cath looked good, but D. Bradley wants to make sure there are no surprises like there were during the last surgery, so he and  dr Zyblewski reviewed the cath angogram results again.  This time they suspect that Vance's coronary arteries may not follow the normal path.  They think it's possible the arteries run through the heart wall not on the outside as usual.  So we have to have a CT scan before Dr. Bradley will consider surgery.  The Dr. that does the scans is out of town so we won't be able to get to it for another week.

the surgery

It seemed like forever while we waited for the surgery to be over. They give you a pager to text you with updates and we were glued to it, but I've since found that the pager is just a feel good thing.  I'm not sure I'll even want one next time.  They just fluff you up and tell you the real stuff later, at least that was our experience.  I guess maybe for the first time I was being treated like a normal patient's parent and I didn't know how to take it. Just give it to me straight. I've been told all this time that my boy has a death sentence hanging over him, so there isn't much you could say that I haven't heard.  But don't sugar coat it then dump it on me later.  That's what they did though.  See, my boy's heart stopped during surgery, if the rumors are correct, three times to the point where they had to do CPR. but no mention of complications on any of those texts. My jaw dropped and my eye wanted to wheal up but what was the point. He was OK now and doing fine. You know I wonder how much worse I would have been if they had said everything was fine but then come to tell me my boy had passed away?   Scary but he was fine.  My mom's reaction was overly dramatic and upset Vu and I even more.  I had to be real short to get her to stop and even then we had to get away from any negativity.  Our boy was good.  That's all we could think about.

Old stuff to catch you up on

I am really bad at story telling and I guess my blog will be the same way.  All the important points are hit, but not necessarily in the correct order. Since I stopped blogging for a while to focus on Vance, I have to go back and fill in the gaps, but I am trying to stay on top of things more this time so there are current events mixed in. Sorry but maybe it will make for more interesting reading. Soooo 2 weeks after Dr. Zyblewski (our Cardiologist) said Vance would be ok with surgery we got the call surgery in 4 days! OMg, my head was just buzzing. How do I plan for major surgery of my child in 4 days. How do I plan for my two other children and what do I tell them? Well, like everything else I procrastinate!  I did call my mom who said she'd be down asap and help me with the girls not only watching them but trying to keep their mind off of it too. So that was a relief. As far as everything else goes I was just in a daze.  I did as much around the house as I could manage, while keeping appointments at the same time. We had a long day the day before at the hospital in "same day" observation. After coming home and having dinner, my mom and her friend Michelle arrived and I spent the rest of the night til 1 am (surgery check-in 5:45am) figuring out what to pack and what to leave. The girls have school the next day but Gillian didn't want us to leave without her seeing and kissing Vance good bye.  She does love that boy so now! She got up at 4 and by the time we were leaving she was so wiped out. Mom said she was sure she was exhausted in school that day since she fell asleep in the car on the way to the bus stop a block away!

Heart Catheter Tomorrow (5/26/2010)

Anxiety is going to take over me tonight.  Vance had a normal cardio appointment scheduled for today.  Since I was downtown I planned on seeing a few other parents who were there;  A couple who just had a new HLHS baby boy yesterday and another whose baby girl has had 5 surgeries and has been struggling since Vance was in the hospital with her back in March.  We were doing the routine checks: height, weight, BP and O2 saturations.  His O2 was down. But still not out of the range they said was normal, but still 10% less than the last few times. I didn't think too much of it. After a while you start to tune out stuff like that unless it's really major.  We did his ECHO which to me looked better than the last time, less fluid.  So I figured we were in for good news. Set up the cath in a few weeks and then on to the Glen in a few months.  Well sometimes you get what you ask for but it's not exactly what you expected.  They said he is out growing his bands, which were always mean to be a temporary fix. But I could tell it wasn't something they were really wanting to happen so soon. I had felt all this time that the cath was just a means to an end, just a way to get to the next step, but for some reason I can't get over the way it's just so final.  Either they say they can do it or they say the can't.  Basically if he will live or die....so hard.

Like the energizer bunny....this boy keeps going and going and going

So when Vance turned two months old I figured it was time to stop treating everyday like his last.  We had to stop by passing things he needed like immunizations, well baby visits, etc. Just after his 2 month check up he had a high fever 103. I did what I would normally do, I called the pediatrician's office.  When they said it could be up to two hours before I got a call back because it was the weekend, I decided to call hospice.  The nurse on call said I could just give him Tylonol.  She sounded like she didn't know what to do, floundering when telling me what dosage to give him, so I wasn't very comfortable with her advise. Plus I didn't want to spend the weekend with a sick baby getting sicker until we could see someone on Monday.  Finally the Dr's office called and said we should get him to an ER babies that young shouldn't be having a fever like that. AHHH!!! I knew it! Stupid nurse! We took him to MUSC as usual.  4 hours later..yawn....we found out he had a UTI, which is not something 2 1/2 month olds normally get. It meant there was potentially an issue with his kidneys and/or bladder. More tests. But it burned me up even more with hospice. They were just going to let him get sicker.  On monday his regular hospice nurse called and said there was an issue with us taking him to the ER.  Hospice is not done that way. And if I took him back to the cardiologist there would be an EVEN bigger issue with that. Well it didn't take much for me to see that hospice was not in our best interest. They were not concerned about helping us care for Vance.  They were just collecting money while waiting for him to die!!  And I wasn't about to just sit by and let him die from neglect.  His heart giving out was one thing but anything else that was within my control to take care of was going to be taken care of. DAMN THESE PEOPLE ALWAYS DISCOUNTING MY CHILD.  I know he isn't suppose to live but WHY can't we treat him like he still is until he isn't anymore!