Angela's Heart Surgery Blog
-- From Dave at 12:08pm 10/15/2008
Angela has been home almost a week now and she is doing great. For the first time in her life her heart rate and blood pressure are normal. You can see it in her face, which is more relaxed, and in her color. Her eyes have more of a smile in them. The wound from the surgery still hurts, but she is smiling and laughing more than ever, even getting into mischief (thinking it is funny to wake up her little sister and hear her wail in protest). We are excited about what this child might be able to do now that she isn't working so hard just to do the basics. We are hopeful that now that her heart is not beating furiously all the time she will eat better, play better, learn better, sleep better. The sleeping has not happened yet, but we're still hopeful. She sees her cardiologist on Thursday for another battery of tests. We are optimistic all will be well. The proof is in her smile.
Heart Surgery Log - Children's Hospital Boston
-- From Dave at 5:44 pm 10/8/2007
We are home! And for the first time since the surgery Angela is laughing again. We got her to smile at the hospital, but it took being home to get her to laugh. It is unbelievable to me that the child I hold in my arms today at home does not have a large hole in her heart anymore. You can't imagine the relief. Still some work to do in terms of her recovery, but just being home has put a smile on her face, and on our faces as well.
-- From Dave at 7:30 am 10/8/2007 - Angela's Third Birthday
Hope to be going home today. Angela had a pretty good night. Eating more. More energy. More playing. More herself. She's still on quite a few meds, still coughing up gunk, there is wound care and follow-up appts at DHMC, but it looks like we can get out of Boston.
-- From Dave at 2:30 pm 10/7/2007
Doesn't look like we are going to get out today after all. Angela's lungs still sound junky so she is getting some chest physical therapy (hearty pats on the back basically) and nebulizer treatments, but the main concern is her not eating. If we can get her calories up (and her hydration), I think we can get home.
Many thanx to the Takasakis, who brought their four beautiful children to us last night for a visit and some playtime. Angela really came alive amidst the din of seven children shouting and laughing and rocking her bed. We all (except Angela of course) had a nice picnic on the Harvard Medical School green (it was unbelievably warm). Played some baseball, the kids had fun running around on the stairs of the school. Erin really dug looking at the huge columns of the building. Nice to get outside.
We still have some milestones to meet once we get home with Angela before she is in the clear. Checking for fluid around the heart will be done (via echocardiogram) at DHMC and infections usually don't manifest for a couple of weeks after the surgery, so we need to be on the lookout for that.
Hope to get discharged tomorrow, which will be Angela's third birthday. A nice gift would be to get home (and miss most of the traffic).
-- From Dave at 8:40 am 10/7/2007
Angela is still lethargic, perhaps coming down with a cold, but the surgical team thinks she is ready to go home. She probably will go home today! We will have a visiting nurse coming to check her out at the house until she is completely recovered.
Angela is doing better mostly because I believe we are managing her pain better, so she is more likely to eat, move around (thus clearning lungs), etc. X-rays look OK, the mild fever something to watch, but not be too concerned about. White cell blood count looks good. I have begun to keep a log of all activities and discussions concerning Angela to be able to help better manage her care amidst the turning wheel of staff changeover. She is doing better this afternoon, but is not as energetic as she was yesterday at this time. This is probably due to the less-high-powered pain medicines. The ones we are using now have names that are familiar to all. And that is good news. Melinda and kids have just arrived. We'll see if Angela feeds off their energy like she does at home.
-- From Dave at 8:48 pm 10/6/2007
Angela had a bit of a setback last night. Just spent a rough night. Uncomfortable. Grinding teeth. Heart Rate bit high. Oxygen saturation a bit low. Would not eat. Fever this morning. Chest x-ray. Some lab work this morning. Still trying to clear some junk out of her lungs. Waiting.....
Melinda back in Orford, will be bringing elder kinder (plus Erin) down soon. Took her 5.5 hours last night to get out of Boston and get home. Typically takes 2.5.
Will visit with good friends the Takasakis today. We'll be managing 8 children aged eight and under between us. We'll try to keep from losing any.
Nurse is hopeful that Angela might be home for her birthday in a couple of days.
Today is Melinda and mines 11th wedding anniversary.
Indians over Yankees 2 games to zero.
-- From Dave at 5:09 pm 10/5/2007
-- From Dave at 9:51 am 10/5/2007
Angela is off the supplemental oxygen. I was able to feed her in my lap this morning and walk around with her in my arms a bit as well. Sleeping comfortably now.
-- From Dave at 7:00 am 10/5/2007
Angela continues to improve and get stronger. She will have a battery of tests today to basically check on her post-op chemistry. She is playing more now and starting to get impatient for some freedom. Still being monitored. Once we get some of the leads off of her, we hope to get her into the playroom. There are a plethora of good toys there for her. Erin has been trying them out in advance. Big issues are feeding her (we are having some problems with her food) and pain management. Still has two "tracer" wires disappearing into her chest (how deep they go I don't want to know, especially when she tries to pull at them). She will have a small sedated procedure today to remove them. Her numbers on the monitor look real good. Melinda and Erin are at friend Sue Turner's house getting some sleep. Pretty quiet night here with Angela and myself, although it is kind of like trying to sleep at an airport. Melinda will go home for the monthly song-swap at our house and to pick up Karina and Dylan. They will come down tomorrow.
-- From Dave at 2:24 pm 10/4/2007
Angela is in the "step-down" unit now, or "the floor"
as they call it here as well, away from the rarified, almost holy atmosphere
of the ICU. Whereas the ICU was like a church, this place is more like
a marketplace or bazaar. Anyway, lots of activity and noise down here
but despite that Angela took a really good nap, and so did I, and she
played for a while crawling around her new "climber" bed and
pulling herself up to a woozy standing position. Saw another little girl
in the hallway who had heart surgery at the same time as Angela and she
is now walking the halls smiling and making mischief. These kids really
do bounce back rather miraculously. Anyway, things are good, just trying
to keep Angela untangled from the various lines still attached to her
to monitor her, and trying to keep her happy and fed. We are still monitoring
respiration, oxygen saturation levels, heart beats per minute, and BP.
She is still receiving supplementary oxygen via a non-invasive nose tube.
Does not hurt, but she still hates it, and often endeavors to remove it
forcefully. Usually when I'm not looking. She still has some wires coming
out of her chest. I am told those will be removed tomorrow. We are just
on the lookout for any kind of apnea event, but other than that, onward
and upward! Again, this is a quiet time because her energy is still pretty
low. As she begins to get stronger, we're going to be pretty busy keeping
her occupied. For the next day or so, I should be able to keep current
with email and whatnot. I feel we are pretty much out of danger and solidly
into recovery mode. I'll feel even better when the supplemental oxygen
is no longer needed.
Also, my mother is home from the hospital and feeling pretty good at home.
-- From Dave at 10:11 am 10/4/2007
Angela is heading to the step-down unit quite soon. This is a good thing. It means she is doing well. The level of attention there will be somewhat lower, so our vigilance will need to be stepped up. She is returning to her old self, blowing raspberries with her tongue and lips, playing a bit with her favorite toys. She will be put into a new kind of bed, one that she can climb around in without falling out. She is tired, but so are we, so this is good. Maybe we can catch some Zs once they move her.
-- From Dave at 6:10 am 10/4/2007
Let me first say after such a long absence that Angela is doing well, but the road has been a difficult one. It was clear from the time they started bringing her out of sedation that things were going to be Angela's way. Upon awaking, she immediately staged a one girl revolution against all the medical equipment. They took the breathing tube out before they wanted to because she was going to rip it out and what commenced was a bitter struggle to keep her calm and keep her blood oxygen saturation levels up. Melinda and I took turns trying to calm her down. Toys did not work. Rocking worked a little, but then it was hard to keep the oxygen pipe they wanted near her face near her face. All masks were quickly ripped away. It is kind of blur now but I remember rocking her with the room full of concerned people looking on, some trying to keep oxygen near her face, others trying to replace her leads, and still another unstiching the tube that went into the artery in her neck (literally taking out the stitches while she thrashed in my arms) while the machines sent up a chorus of protest concerning her heart rate, breathing and oxygen saturation. At one point, she "desat-ted" and the situation became quite tense. For my part I was thinking that if I could not calm this child down, she was going to get herself into some serious trouble, and I could tell from the faces in the room, I was not the only one thinking this. What followed was about six hours of this bitter struggle, to a greater and lesser degree. Five minutes she would be calm, in which leads would be replaced, stats returned to OK zone on the monitor, and then another furious act of rebellion would have us fighting and worrying again. By nine o'clock last night, Melinda and I were not sure we could sustain it much longer, but the calm periods evenually lengthened and the rebellion lessened. It is harder at night, because there is a skeleton crew. At one point I was holding a crying Erin in my arms, both Melinda and the nurse were away (Erin had been asleep) and trying to keep a thrashing Angela from falling off the bed and helplessly watching the monitors numbers drop. At 1 o'clock, the big breakthrough, she could take some clear liquids. Which she did, about 4 oz. This immediately calmed her down, soothed her sore throat (from the breathing tube) and put something in her belly. Another 4 oz of water. Even better. Then 8 oz of apple juice. Better still. Gave her her first formula around 2:30, things even better. Of course, yeah her throat hurt, her chest hurt, but mostly I think she was simply really hungry. She has taken quite a bit of formula since 2:30 and is happy when doing so. When not doing so, we go back to wrestling. Had some moments while feeding her last night in which I looked in her eyes and there she was again, the child I know. It was very comforting to both of us. I feel now that things are going to be all right. Did not feel that way through much of last evening. Her nurse, upon leaving, said that he had never had such a difficult time with a patient in all his nine years of caring for them, large and small. Well, that's our Angela.
-- From Dave at 3:00 pm 10/3/2007
Chest x-ray complete, lungs still a "little wet" so getting a diaretic to flush some stuff out. A little steriod to treat any swelling from the breathing tube and then when the time is right, the tube will be removed.
-- From Dave at 2:50pm 10/3/2007
My general impression at this point is that it has not been an easy road so far (compared to other patients), but that things are going relatively well. The two guys working on Angela seem pretty stressed. I am trying not to get stressed as well. The one guy is in training so we get to hear everything that is going on as the veteran guy verbalizes everything. There have been times today when I would have rather not heard what they had to say about risks, possible issues, etc. But the rational mind, the one unburdened by fear and dread, knows that it is best to be prepared with all the possible information one can have. So we listen, and ask questions. And wait.
My mother is out of surgery and awake and talking. She will return home tomorrow.
-- From Dave at 2:00 pm 10/3/2007
The tube close to Angela heart has been removed with no issues. The two tubes draining her chest cavity have been removed as well. A chest x-ray will be performed to check on things next. We are just hours away from the breathing tube being taken out. Then she won't have to be so sedated. Then I hope we'll have her back with us mentally. Then the real work begins. Keeping her still.
On a related note, my mother is due to be getting out of a 3 hour surgery in Chicago after having her thyriod removed. My sister tells me she is doing well.
-- From Dave at 9:50 am 10/3/2007
Sorry for the lack of update. I know there are quite a few of you out there. We have a lot to do trying to get out of the hotel, a lot of medical staff in and out, another chaplain visit, just plain a lot of folks dropping in, interns, white-coats of every conceivable title and role. Plus on a shift change, it is like starting all over again. New faces. New updates. That is why it is important to be here all the time. Continuity. That's what parents can provide in this situation. Continuity and history. They are going to remove the breathing tube this afternoon. Also of some concern is them removing from tubes from near the heart itself. There could be some bleeding there and the risk of having to go in again to sew something up. "Plenty of surgeons on the floor", we are told, so not to worry. Big issue to manage is Angela wanting to be on the move. She must stay still at this point. Stillness is not her strong suit. They have located the toy with the spinning balls that I mentioned in an earlier post. Hopefully we can use this a bit instead of her always being knocked out again. We have been told there are no accommodations with 20 miles of downtown. The Red Sox nation has come to town. Melinda/Erin will stay with friends over the next few days. I'll be staying in the room with Angela. Hope to make some progress today. They removed one machine this morning that monitored blood flow to the brain. One piece of equipment down. Quite a few to go.
-- From Dave at 1:19 am 10/3/2007
Always something beeping. Never anything serious. Not much change. Draining from the chest less. Temperature slightly elevated (which is normal) but being watched (for possible signs of infection). All is "going well". Patience.
-- From Dave at 8:45 pm 10/2/2007
Condition largely unchanged. She has awoken a few times and seems to know we're there. Problem is as soon as she wakes she wants to move, which she cannot do with all the tubes. Other problem is that they use pupil dilation to tell whether she has enough morphine in her or not. With her columbomas this is difficult because her pupils are large and generally do not dilate. Things we are anxious about, and would like to see removed, are the chest tubes which are still filling with blood (although more slowly we are told) and the breathing tube. Once these things are removed I will feel a little better about things. A lot more machines to freak out about in the deep of the night than I am used to from previous stints in the ICU at DHMC. I suppose I will get used to them over the course of the days. We had a nice home-cooked dinner brought to us this evening provided by Sam Rubin, Jennifer Smith, and their daughter Julia who works just a block away. It was nice to pass an hour or so in conversation. The hours can drag on when impatient for a recovery that is certain to be slow-going, and seems fraught with perils, imagined or otherwise.
-- From Dave at 4:30 pm 10/2/2007
I'm sitting with Angela now in the ICU. Take away all the technology (which is considerable - I count about 15 machines) and she actually looks pretty good. The surgery was a success. Her color is excellent. She is experiencing the first normal blood pressure of her life. She has opened her eyes a couple of times. I look at all those machines as a mountain we need to climb in the next week or so, starting with the breathing tube. She has been doing some breathing on her own, but they want to keep her very sedated until tomorrow morning, so she needs the help. We have been told by friends who have been through this here to go home at this point and get some sleep. This place is hyper-vigilent with numerous folks coming and going all the time plus folks monitoring stuff right outside the door. But the impulse to stay is too great. The thought of a cell phone ringing in the dead of night would keep me awake anyway, so I might as well be here. That which is watched cannot go amiss. So we wait, and watch, knowing every passing hour brings us closer to getting Angela back, stronger than ever.
-- From Dave at 1:15 pm 10/2/2007
The procedure is complete. We just spoke to the surgeon. He said "it was tough." He reiterated what he had said to us about the rarer trisomy conditions, unpredicable and therefore higher risk. The VSD was in a tough spot, had to try various ways of getting to it. The good news is that they did an echo and the pressures are now normal. We should be able to see her in about an hour. She did very well. The key thing was the heart and lungs beginning to work again on their own after being stopped for an hour and a half. This happened, so we can rest a little easier. Can't wait to see her.
-- From Dave at 12:45 am 10/2/2007
-- From Dave at 9:45 am 10/2/2007
Angela had a good night sleeping, arose at about 5 and we staved off hunger crankiness until about 6:45. Then she got cranky, so we got her dressed and I put her in her chair and took to the streets of Boston. Yesterday, she has really enjoyed the buildings, the traffic and the general hustle-bustle of the streets. It was cool outside when we left the hotel, but she immediately forgot her hunger and began to enjoy all the sensations that a busy city street can provide. By the time we got to the pre-op area, she was asleep. She remained asleep through most of the standard testing (BP, temp, oxygen saturation, lung sounds etc.). We left the exam room and a hospital chaplain was waiting for us there to give Angela a blessing. Angela was awake for this and generally happy back in the waiting room playing with a bead and wire toy, watching the bubbles in the large fish tank, getting lots of hugs and play from mom and dad. Soon we were called and started heading up to the Operating Room Floor. As we left the pre-op area I noticed a huge children's book reproduction of a rabbit dancing before a host of frogs playing strings instrumentson that read "Soon as the evening shades prevail, The moon takes up the wondrous tale" .It caught my eye briefly and I found it comforting. By the time we got to the last exam place before the OR, Angela remembered how hungry she was and protested vehemently when we tried to dress her in her hospital pajamas. One of the nurses soon produced perhaps one of Angela's favorite toys in the world. A whirling ball of light on a stick is the best way to describe this toy, except this one had three whirling balls. This did the trick. She was mezmerized. We met the anasthaesiologist team, went over what the day was going to look like and then they gave her an oral sedative that mellowed her out pretty quick and put a big smile on her face. We got a lot of time to just hold her, kiss and caress her (Melinda sang her a little song) before they took her away. She looked very happy and Melinda commented on how beautiful she was.
They will touch base with us three times during the surgery. First, when they make the incision, second when Angela goes on the heart-lung bypass machine, and then again when she comes off the heart-bypass machine. It is going to be a long day.
-- From Dave at 2:27 am 10/2/2007 --
We had a long day yesterday with Angela and all the pre-operative appointments. We met the team of doctors and Angela did very well (amidst all the poking and prodding, x-rays, blood-draws, echocardiogram etc.) and everything looks good to go for the surgery this morning. At around 8pm Melinda and I bathed her with a special anti-microbial sponge. She enjoyed that quite a lot. She promptly fell asleep afterwards from the long day and warm water. I rose at 1 am to feed her the last food she can have before the surgery (except breastmilk). Had to keep re-rousing her to get her to eat. At 3 am we will rouse her again to give her some breastmilk and then it's just clear liquids until the surgery. It has been nice to have some dedicated "Angela time" with the other two kids back at home with their Grandpa Wayne, and Erin hanging out with good friend Jessica Marlies and her son up from North Carolina to help out. We had a real nice time with her in the room last evening full of laughter and wrestling and snuggling. We report to the hospital at 7:30 am. Surgery should take 6-8 hours.