Erin had her follow up appointment with Dr Jeff on Wednesday. We were understandably nervous after our last appointment, wondering what new hiccup we would encounter next.
It started with an x-ray, where they put her in a small chair that sits up high in order to get the proper angle. The technician remarked that Erin is the first child that hasn't cried going into the chair. Actually, she loves it because she pretends it is a throne and she is the queen. She's a pro at all of these tests now.
After the standard stats like height, weight, etc, Jeff walked in and announced that the x-ray was clear. She sounded good, and he was very happy with her progress. He then sent her for an echo to get a better look. When we reconvened, he said that she still has a slight amount of effusion on both sides near her lungs, and a small amount around the heart, but he considered it normal for the surgery she had. He reminded us that going on the heart lung machine makes anyone "leaky" for fluid buildup as a natural byproduct, and that she was going to have a small amount just from that. She continues on her medicine, albeit for a reduced dose. He thinks she will be on it for 3 - 6 months.
Sheila was excited to hear that Erin can now go to altitude, meaning that we can take her skiing. Since her birth, she has been unable to go to high altitudes due to her low blood oxygen levels, now a thing of the past. Overall, it was an excellent appointment and she doesn't have to see Jeff for two weeks.
When we originally scheduled Erin's surgery, it was for early June. Sheila subsequently wanted to change the date to May, in order to give Erin a better summer. I was against the change, as I didn't want her missing school, and I felt her recovery was going to be such that the summer was shot either way. Who could recover from open heart surgery in a few weeks, and have their energy and enthusiasm back? As it turns out, Sheila made the correct call, as Erin is seemingly back to normal. She starts summer camp on June 10, and can't wait. She is already bored, and misses school. She does get a little tired, and getting her to bed is easy (a nice side benefit). But other than that, you wouldn't know she had anything done, unless you saw her bandage.
I am concerned that she will be upset when she sees her scar. There is nothing we can do about it, and hopefully she will take it in stride. She was concerned last night about the steri-strip bandage coming off. She is worried that it will be a painful ordeal, like taking out the tubes. She was relieved to find out it will merely fall off.
More than likely, this will be the last blog entry. I'm glad. I find these to be very challenging to write, and a constant reminder of Erin's challenges. I hope that someday she will read these entries and come away with a renewed sense of who she is...an incredibly strong, resilient and amazing individual. I think she will have a very deep sense of pride over what she has overcome, and the way she did it. I know I have the ultimate bias, but I find the way that she has handled everything to be absolutely remarkable. She will have more issues ahead, as this is a lifelong condition, but I know she can and will handle them well and with grace.
In some ways it seems like a lifetime ago, 5 years next month when I started writing these blogs to keep family informed of what was happening on a daily basis as Erin struggled at birth. There were daily ups and downs and medical emergencies that needed communicating, and this seemed like a great option. It morphed into so much more, albeit unintentionally. It is a record of an important part of her life, one that will have a lasting impact on who she is. It was cathartic at times to put down on paper the issues and feelings that have had more ups and downs than the largest roller coaster. And finally, it has proved to be an outlet for thoughts that I would ordinarily never share, given my very private nature.
I have to close by one again thanking anyone who took the time to read this for their caring, love and support. We have been continuously amazed by the outpouring of support that we have received, and how widely read this blog has become. New entries routinely garner a 100 page views in no time, which is startling. Total pageviews passed 10,000 a long time ago. For Erin's benefit, I have saved every single e-mail and note from the time of her birth to include as a record for her. I have a saved e-mail folder with countless notes of support and encouragement for Erin that she will someday read. Many are from people she will never know. More astounding to me are the notes we receive from individuals that neither Sheila nor I know, who somehow stumbled across Erin's blog by accident and keep following her story.
Michael Jordan once told me that the greatest gift he ever received was the gift of confidence and self-esteem from his parents. I can't help but think that someday reading all of the notes of love and support will have a positive impact on Erin's self-esteem. In an increasingly challenging world to grow up in, that will be a good thing.
Friday, May 24, 2013
Tuesday, May 21, 2013
Tuesday, May 21 2013
Here is Erin, a few hours after being released from the hospital on Sunday. I love the happiness she exhibits.
Monday, May 20, 2013
Monday, May 20 2013
Erin was discharged from the ICU yesterday. All around, it was an interesting day.
Sheila arrived early, at around 7 am. Personally, I would have tried to sleep in, but she is far tougher than I. We had a fun morning, right up until they showed up to take blood. Erin's line had failed the day before, necessitating taking blood from a new stick each time. At this point, as one can imagine, Erin was hyper-sensitive to doctors, nurses, and especially needles and pain. She managed to get through it with me holding her arm in a vise grip, feeling like a total jerk.
The fun continued when, after debating between throwing her portable monitor through the window because we couldn't turn off it's incessant alarm, or hitting the call nurse button, I chose the call nurse button. One would think that "Staff Assist" would be that button. Wrong. Within 15 seconds of hitting the button, our room was filled with at least 9 doctors and nurses, all out of breath after an all-out sprint to get to our room. Apparently "Nurse Assist" means someone has coded, and it is all hands on deck. Great, I have the least sick child on the floor and here I am pulling this stunt. Everyone was very good natured about it, and managed to find a way to tease me about it. I was mortified. Luckily I am intimately familiar with the feeling of having totally screwed up.
After the labs and x-ray, John Costello who runs the cardiac ICU came in to discuss options with us. He told us that our option was to take a chance and leave, knowing the Erin could possibly relapse, or stay for another day. His point of view was that Erin was in little danger of relapsing, but he wanted us to know that it was a slight possibility. We were pretty quick to decide, and after two hour of waiting to go and finishing details, we were able to leave. We went right to the Disney Store, located conveniently a block from the hospital. Erin picked out some well deserved treats, and we had lunch afterwards sitting outside on a gorgeous Chicago day.
Erin displayed no effects of her hospitalization whatsoever. She was energetic, playful, and totally engaged all day long. She claims that her incision does not hurt at all. She even had me take her to the park late Sunday afternoon to swing in the swings, and play on the tire swing. She has learned to swing all by herself this year at school, and is quite proud of her accomplishment. We had a well deserved trip to Dairy Queen afterwards.
It is absolutely amazing to watch this not yet 5 year old child undergo open heart surgery, and a subsequent follow-up hospitalization with very little complaint, and a complete continuous zest for life. She refuses to complain, and acts like nothing has happened. The only sign we have of the ordeal she has undergone is that she is tired when she goes to bed. Erin is the toughest individual that I know.
Sheila arrived early, at around 7 am. Personally, I would have tried to sleep in, but she is far tougher than I. We had a fun morning, right up until they showed up to take blood. Erin's line had failed the day before, necessitating taking blood from a new stick each time. At this point, as one can imagine, Erin was hyper-sensitive to doctors, nurses, and especially needles and pain. She managed to get through it with me holding her arm in a vise grip, feeling like a total jerk.
The fun continued when, after debating between throwing her portable monitor through the window because we couldn't turn off it's incessant alarm, or hitting the call nurse button, I chose the call nurse button. One would think that "Staff Assist" would be that button. Wrong. Within 15 seconds of hitting the button, our room was filled with at least 9 doctors and nurses, all out of breath after an all-out sprint to get to our room. Apparently "Nurse Assist" means someone has coded, and it is all hands on deck. Great, I have the least sick child on the floor and here I am pulling this stunt. Everyone was very good natured about it, and managed to find a way to tease me about it. I was mortified. Luckily I am intimately familiar with the feeling of having totally screwed up.
After the labs and x-ray, John Costello who runs the cardiac ICU came in to discuss options with us. He told us that our option was to take a chance and leave, knowing the Erin could possibly relapse, or stay for another day. His point of view was that Erin was in little danger of relapsing, but he wanted us to know that it was a slight possibility. We were pretty quick to decide, and after two hour of waiting to go and finishing details, we were able to leave. We went right to the Disney Store, located conveniently a block from the hospital. Erin picked out some well deserved treats, and we had lunch afterwards sitting outside on a gorgeous Chicago day.
Erin displayed no effects of her hospitalization whatsoever. She was energetic, playful, and totally engaged all day long. She claims that her incision does not hurt at all. She even had me take her to the park late Sunday afternoon to swing in the swings, and play on the tire swing. She has learned to swing all by herself this year at school, and is quite proud of her accomplishment. We had a well deserved trip to Dairy Queen afterwards.
It is absolutely amazing to watch this not yet 5 year old child undergo open heart surgery, and a subsequent follow-up hospitalization with very little complaint, and a complete continuous zest for life. She refuses to complain, and acts like nothing has happened. The only sign we have of the ordeal she has undergone is that she is tired when she goes to bed. Erin is the toughest individual that I know.
Sunday, May 19, 2013
Sunday, May 19 2013
Sunday, 7:00 am. I have just woken up from the surprisingly comfortable couch after spending the night in Erin's room. I am really over this place, but I feel guilty when I have those feelings because I can only imagine Erin's point of view.
The latest is that yesterday's x-ray shows that the fluid buildup is gone. She is back to normal, stomach flat, and off the IV Lasix. She is now taking an oral liquid Lasix three times a day, and from what we understand, will continue to do so at home for perhaps months. They are keeping her in the hospital as a precaution, to make completely sure that she does not revert and start to accumulate fluid again. I am hoping that she gets out today, but suspect it might be Monday. One piece of bad news is that the line in her arm has finally failed. My rudimentary understanding is that these lines have a limited shelf life, especially for being able to draw blood. That means that as of last night, her twice daily blood draws are now with a needle, which needless to say is not a happy time. The nurse just stuck his head in to introduce himself and let me know he could wait till 9 for the blood draw. As soon as he left, I was peppered with questions from Erin about what labs are, what they measure, how long it takes, etc.
Dr Jeff told me yesterday that he is less concerned than he was originally over whether the ASD fix is sufficient to allow her heart to work properly. The right chamber is seeing a far larger flow of blood than ever before, and we can only hope that it can handle the workload.
I cannot say enough about how well Erin has handled this ordeal. Ordeal is relative, because there are a lot of very bad things happening on this floor, far worse that what Erin has had to go through at any time. It is emotionally draining just to walk onto the ICU unit. Every time I leave her room to go run an errand, it's like going through an emotional gauntlet. Even so, Erin's stay has not been without its challenges for her, and she has for the most part handled things beautifully. It is hard to keep a 4 year old cooped up in a small room for 4 1/2 days. She has handled things with great dignity and an upbeat attitude that is inspiring. She is far tougher than I will ever be.
We did get out for a bit yesterday, as they finally let her leave the floor to go to the playroom. In the playroom, we found a face painter and Erin had a beautiful butterfly painted on her face. Afterwards, we played together in the fire truck that adorns the 12th floor entryway. Erin has quite the imagination. she creates elaborate scenario's that she expects one to follow. Yesterday involved her being captured and kept in a cage. I had to get to her at one point by encountering a troll, where the only way around the troll was to jump over him. I was laughing too hard at her elaborate descriptions of the scene to concentrate on what my task at hand was, for which I was severely admonished.
Let's hope we get out of here today. We are all at our limits.
The latest is that yesterday's x-ray shows that the fluid buildup is gone. She is back to normal, stomach flat, and off the IV Lasix. She is now taking an oral liquid Lasix three times a day, and from what we understand, will continue to do so at home for perhaps months. They are keeping her in the hospital as a precaution, to make completely sure that she does not revert and start to accumulate fluid again. I am hoping that she gets out today, but suspect it might be Monday. One piece of bad news is that the line in her arm has finally failed. My rudimentary understanding is that these lines have a limited shelf life, especially for being able to draw blood. That means that as of last night, her twice daily blood draws are now with a needle, which needless to say is not a happy time. The nurse just stuck his head in to introduce himself and let me know he could wait till 9 for the blood draw. As soon as he left, I was peppered with questions from Erin about what labs are, what they measure, how long it takes, etc.
Dr Jeff told me yesterday that he is less concerned than he was originally over whether the ASD fix is sufficient to allow her heart to work properly. The right chamber is seeing a far larger flow of blood than ever before, and we can only hope that it can handle the workload.
I cannot say enough about how well Erin has handled this ordeal. Ordeal is relative, because there are a lot of very bad things happening on this floor, far worse that what Erin has had to go through at any time. It is emotionally draining just to walk onto the ICU unit. Every time I leave her room to go run an errand, it's like going through an emotional gauntlet. Even so, Erin's stay has not been without its challenges for her, and she has for the most part handled things beautifully. It is hard to keep a 4 year old cooped up in a small room for 4 1/2 days. She has handled things with great dignity and an upbeat attitude that is inspiring. She is far tougher than I will ever be.
We did get out for a bit yesterday, as they finally let her leave the floor to go to the playroom. In the playroom, we found a face painter and Erin had a beautiful butterfly painted on her face. Afterwards, we played together in the fire truck that adorns the 12th floor entryway. Erin has quite the imagination. she creates elaborate scenario's that she expects one to follow. Yesterday involved her being captured and kept in a cage. I had to get to her at one point by encountering a troll, where the only way around the troll was to jump over him. I was laughing too hard at her elaborate descriptions of the scene to concentrate on what my task at hand was, for which I was severely admonished.
Let's hope we get out of here today. We are all at our limits.
 |
| Great attitude |
 |
| Aunts Colleen and Mo, Uncle Mike and cousin Megan |
 |
| Note the 100 in the upper right - finally after a lifetime of 84's |
 |
| She used to sleep like this as a baby, giving the touchdown signal |
Friday, May 17, 2013
Friday, May 17 2013
Erin continues to make progress. Her x-ray (which they take at 4:30 am so that Jeff can see them first thing when he arrives at 6:30) shows that the left side effusion is gone, and a small amount remains on the right. Tomorrow's x-ray will determine whether she goes off intravenous Lasix and moves to the oral form. If that is the case, she may have only 2 days left here. In any case, she will spend more time here at Children's for the fluid buildup than she did at Mayo for open heart surgery.
Once Erin is home, she will remain on oral diuretics for a period of months, being slowly weaned off. I had no idea what we were in for, but if we avoid the chest tube it's worth it.
The real issue in all of this is whether the simple (it's all relative) ASD fix is sufficient, or whether her heart's right side won't be able to handle the increased blood flow through the chamber now that the hole is closed. If so, then she will need the rest of the originally planned surgery. I can't even allow those thoughts to register.
Amazingly, she remains in great spirits. Yesterday, her Aunt Mo, Uncle Mike, and cousin Megan along with Aunt Colleen came and visited. Erin loves her family, and is always thrilled to see them. She had a good night sleeping, with one exception. The exception came when her lab tests showed reduced potassium, a common side effect of diuretics. One of the effects of potassium is that it helps the heart muscle work, so for Erin it is critical.
Potassium given intravenously is unpleasant, and can burn as it goes in through the IV, in some cases quite painfully. This was exactly the reaction Erin got after they hooked her up to the IV, crying quite hard over the pain. The nurse explained that she had even changed the drip from a 3 hour regimen to a 4 hour regimen to minimize this as much as possible. The alternative was to take it orally through an extremely large syringe. The nurse warned me that it would be foul and very unpleasant. Of course, as things go in a hospital, it took forever for the oral dose to show up, and by the time it arrived Erin was fast asleep. She awoke about as happily as I would have from a sound sleep to find an me trying to give her an extremely foul medicine. We ended up literally having to hold her down and restrain her while I gave it to her. Because it was so large, it took numerous tries to finally get it all in her. I feel like I will be apologizing to her for the rest of my life for putting her through that. It was that bad. Afterwards, she curled up on my chest on the bed and went to sleep. We were both spent.
Mayo had a much better way of dispensing potassium, mixing a powder form in chocolate pudding. Dr. John Costello made that happen for Erin, so going forward we won't be having a repeat of this nightmare. The balance of the night was unremarkable, and Erin slept the night through with the exception of waking for labs and x-ray at 4. I wish I could have slept.
Today, our neighbor Liz came over with her 14 year old daughter Isabelle, whom Erin adores. Isabelle brought nail polish and did Erin's toes. Erin feels very girly and pretty. It was pretty funny watching her get "saloned" in the ICU.
Aunt Colleen is here tonight and we have ordered Italian food from a favorite restaurant. Sheila has night duty. It's hard to think about spending the entire weekend here, but there is no alternative.
Once Erin is home, she will remain on oral diuretics for a period of months, being slowly weaned off. I had no idea what we were in for, but if we avoid the chest tube it's worth it.
The real issue in all of this is whether the simple (it's all relative) ASD fix is sufficient, or whether her heart's right side won't be able to handle the increased blood flow through the chamber now that the hole is closed. If so, then she will need the rest of the originally planned surgery. I can't even allow those thoughts to register.
Amazingly, she remains in great spirits. Yesterday, her Aunt Mo, Uncle Mike, and cousin Megan along with Aunt Colleen came and visited. Erin loves her family, and is always thrilled to see them. She had a good night sleeping, with one exception. The exception came when her lab tests showed reduced potassium, a common side effect of diuretics. One of the effects of potassium is that it helps the heart muscle work, so for Erin it is critical.
Potassium given intravenously is unpleasant, and can burn as it goes in through the IV, in some cases quite painfully. This was exactly the reaction Erin got after they hooked her up to the IV, crying quite hard over the pain. The nurse explained that she had even changed the drip from a 3 hour regimen to a 4 hour regimen to minimize this as much as possible. The alternative was to take it orally through an extremely large syringe. The nurse warned me that it would be foul and very unpleasant. Of course, as things go in a hospital, it took forever for the oral dose to show up, and by the time it arrived Erin was fast asleep. She awoke about as happily as I would have from a sound sleep to find an me trying to give her an extremely foul medicine. We ended up literally having to hold her down and restrain her while I gave it to her. Because it was so large, it took numerous tries to finally get it all in her. I feel like I will be apologizing to her for the rest of my life for putting her through that. It was that bad. Afterwards, she curled up on my chest on the bed and went to sleep. We were both spent.
Mayo had a much better way of dispensing potassium, mixing a powder form in chocolate pudding. Dr. John Costello made that happen for Erin, so going forward we won't be having a repeat of this nightmare. The balance of the night was unremarkable, and Erin slept the night through with the exception of waking for labs and x-ray at 4. I wish I could have slept.
Today, our neighbor Liz came over with her 14 year old daughter Isabelle, whom Erin adores. Isabelle brought nail polish and did Erin's toes. Erin feels very girly and pretty. It was pretty funny watching her get "saloned" in the ICU.
Aunt Colleen is here tonight and we have ordered Italian food from a favorite restaurant. Sheila has night duty. It's hard to think about spending the entire weekend here, but there is no alternative.
Thursday, May 16, 2013
Thursday, May 16 2013
One week from surgery. Unfortunately, we have hit a bump in the road. At the last echo before boarding the plane home on Monday, Erin's tests showed a buildup of fluid around her heart and lungs. It is not unusual after surgery, but something that needs watching. Over the two days, we noted that her stomach was distended, and she was having some slight difficulty in breathing laying down. I ended up sleeping with her on Tuesday night, and she was tossing and turning (and wacking me in the face every 15 minutes) the entire night.
On Wednesday, we had a follow up appointment at Lurie Children's with Jeff Gossett. I told Sheila as we walked into the hospital that this was the first visit in Erin's entire life where we weren't walking in worried about what we would hear. Wrong again.
After having an echo and chest x-ray, Jeff stunned us by telling us that her fluid buildup was reaching dangerous proportions, and that she needed to be admitted to the ICU immediately. He wanted to start here on an aggressive treatment of Lasix to see if that would reduce the fluid buildup. If not, the next and likely step would be a chest tube. Erin had a complete and total meltdown when she realized that she was going to be staying at the hospital. She was inconsolable for a period of time. Who can blame her? She is so over this entire process.
I quizzed Jeff about how long we were looking at, as he initially hedged on "a couple of nights." This time, he told me that we should plan on a week, and hope for less. I was stunned that it could go on that long. The hope is that she simply was dismissed too soon from the hospital in Rochester, and that we can treat things with Lasix. Jeff told me that one consideration, still too early to think about seriously, is that her heart is not responding to just the ASD closure, and that she needs the balance of the surgical intervention that was originally planned. We can't even think about putting Erin through this.
She was terrified when they came to do the IV, having experienced enough pain over the last week that her tolerance at this point is zero. The staff did a great job numbing the area and doing a relative painless job. She is in a large room, with a pull out couch, nice recliner, and generally very comfortable surroundings. She even has a large HD flat screen that seems to get a nice array of channels with the exception of last night's Bulls playoff game. Go figure. Food is ordered from a room service menu that provides a wide choice of options. The downside is that it takes forever. Dinner last night took an hour from ordering. Breakfast took two hours, due to the order allowing her food not being properly entered into the system. Really frustrating.
An hour after checking in, Erin was bouncing right back and having a ball playing. She told me she liked the hospital because they bring her food and there are nice people here. She knows her job is to go to the bathroom as often as possible, and she did a great job last night. I finally left for home at 9, as Sheila was taking the first night.
Apparently she had an awful night with Erin. Every two hours when they came in to take vitals Erin would have a complete meltdown coupled with screaming and kicking, wanting to go home. I feel so bad for both of them. When I arrived, Erin was over it and was laughing out loud at Sheila's antics. You would have thought that she loved it here.
The good news is that Erin got rid of almost 2 liters of fluid over night. The Lasix seems to be working and for now, the chest tube is off the table. Having been through this, we know how quickly things can turn, so we are not getting overly excited.
I will post more when we have more news. For today, Erin will enjoy a number of visitors, and try to stay upbeat.
On Wednesday, we had a follow up appointment at Lurie Children's with Jeff Gossett. I told Sheila as we walked into the hospital that this was the first visit in Erin's entire life where we weren't walking in worried about what we would hear. Wrong again.
After having an echo and chest x-ray, Jeff stunned us by telling us that her fluid buildup was reaching dangerous proportions, and that she needed to be admitted to the ICU immediately. He wanted to start here on an aggressive treatment of Lasix to see if that would reduce the fluid buildup. If not, the next and likely step would be a chest tube. Erin had a complete and total meltdown when she realized that she was going to be staying at the hospital. She was inconsolable for a period of time. Who can blame her? She is so over this entire process.
I quizzed Jeff about how long we were looking at, as he initially hedged on "a couple of nights." This time, he told me that we should plan on a week, and hope for less. I was stunned that it could go on that long. The hope is that she simply was dismissed too soon from the hospital in Rochester, and that we can treat things with Lasix. Jeff told me that one consideration, still too early to think about seriously, is that her heart is not responding to just the ASD closure, and that she needs the balance of the surgical intervention that was originally planned. We can't even think about putting Erin through this.
She was terrified when they came to do the IV, having experienced enough pain over the last week that her tolerance at this point is zero. The staff did a great job numbing the area and doing a relative painless job. She is in a large room, with a pull out couch, nice recliner, and generally very comfortable surroundings. She even has a large HD flat screen that seems to get a nice array of channels with the exception of last night's Bulls playoff game. Go figure. Food is ordered from a room service menu that provides a wide choice of options. The downside is that it takes forever. Dinner last night took an hour from ordering. Breakfast took two hours, due to the order allowing her food not being properly entered into the system. Really frustrating.
An hour after checking in, Erin was bouncing right back and having a ball playing. She told me she liked the hospital because they bring her food and there are nice people here. She knows her job is to go to the bathroom as often as possible, and she did a great job last night. I finally left for home at 9, as Sheila was taking the first night.
Apparently she had an awful night with Erin. Every two hours when they came in to take vitals Erin would have a complete meltdown coupled with screaming and kicking, wanting to go home. I feel so bad for both of them. When I arrived, Erin was over it and was laughing out loud at Sheila's antics. You would have thought that she loved it here.
The good news is that Erin got rid of almost 2 liters of fluid over night. The Lasix seems to be working and for now, the chest tube is off the table. Having been through this, we know how quickly things can turn, so we are not getting overly excited.
I will post more when we have more news. For today, Erin will enjoy a number of visitors, and try to stay upbeat.
Tuesday, May 14, 2013
Tuesday, May 14 2013
Today is our 14 year anniversary. We couldn't have had a better anniversary. Happy anniversary to the best wife, and more importantly, best Mother ever. We flew home from Rochester this afternoon, and Erin is safely ensconced in our Chicago home.
Yesterday, Erin had an appointment back at Saint Mary's to have an echo as a follow up. As we arrived, there were numerous black SUV's and cars in front, along with Secret Service personnel. Turns out that it was the Secret Service Diplomatic Protection Unit, waiting for the Dali Lama to leave. By the time we parked underground and came out of the elevator, he was in the car waiting to go. We literally missed him by seconds as we were leaving the hospital on Sunday, and as we were arriving on Monday.
Erin's echo was brief and slightly mixed. Importantly, there is no longer any shunting of blood through the ASD hole, now closed. Having seen numerous echo's in her lifetime, it looked abnormal to me. The reality was that I had never seen a normal echo, without shunting. The valve has a modest leak, but within tolerance levels. The only concern is that she has some fluid buildup around her lungs. This is somewhat normal for her surgery, and needs to be watched. Her Lasix prescription was increased in order to rid her body of excess fluid. It was suggested that we have a chest x-ray at her follow up appointment in Chicago with Dr. Gossett to monitor the situation. That appointment is tomorrow, Wednesday May 15.
After the appointment, Aunt Mo and cousin Megan left to drive back to Chicago. They were a huge hit the night before over dinner in the apartment that we had rented. Erin really came out of the shell she was in, and had a ball with the two of them. We are so grateful to Aunt Mo and Megan, and Aunt Sara and Uncle Alex for all making the trek to Rochester to give Erin love and support.
We had dinner in the apartment with takeout for the second straight night from Victoria's. Erin announced that when in Rochester she only eats at Victoria's, which except for her hospital stay is true. It seemed that her goal was to eat half of Rochester. She ate before dinner, ate a large dinner, and then continued to eat non-stop right up until bedtime. I have never seen anything like it. I was full watching her.
I slept in Erin's bedroom and she continues to struggle at night. She is in pain at night, and has difficulty with breathing due to mucus issues. I was up most of the night, as was Sheila the night before watching over her. Yet she seems none the worse for the wear. She awoke in a great mood, we had breakfast out, and then left for the airport. The trip home was uneventful, yet remarkable in that she walked the entire way in O'Hare after we landed. She is a little slow, but determined to do it on her own. Arriving home, we found a life size Minnie Mouse balloon on our doorstep, courtesy of good friends Tim and Stacey Cavanagh. Erin loved it, and spent some time "doctoring" Minnie. I think she wanted to put Minnie through the same punishment she took in Rochester. Afterwards, she took the neighbor's dog for a walk, and then asked me to take her to our neighborhood park to check things out.
Tonight, Erin's beloved Priscilla (or as Erin has named her, "Passy") came over for dinner, and Erin was in heaven. I have never seen her more animated or funny. She was a laugh a minute. I know that one impact of heart surgery can be depression. She seems to be undergoing exactly the opposite reaction. She seems even more outgoing then she already was. She was dancing, singing, and enjoying life. All one could ask.
Yesterday, Erin had an appointment back at Saint Mary's to have an echo as a follow up. As we arrived, there were numerous black SUV's and cars in front, along with Secret Service personnel. Turns out that it was the Secret Service Diplomatic Protection Unit, waiting for the Dali Lama to leave. By the time we parked underground and came out of the elevator, he was in the car waiting to go. We literally missed him by seconds as we were leaving the hospital on Sunday, and as we were arriving on Monday.
Erin's echo was brief and slightly mixed. Importantly, there is no longer any shunting of blood through the ASD hole, now closed. Having seen numerous echo's in her lifetime, it looked abnormal to me. The reality was that I had never seen a normal echo, without shunting. The valve has a modest leak, but within tolerance levels. The only concern is that she has some fluid buildup around her lungs. This is somewhat normal for her surgery, and needs to be watched. Her Lasix prescription was increased in order to rid her body of excess fluid. It was suggested that we have a chest x-ray at her follow up appointment in Chicago with Dr. Gossett to monitor the situation. That appointment is tomorrow, Wednesday May 15.
After the appointment, Aunt Mo and cousin Megan left to drive back to Chicago. They were a huge hit the night before over dinner in the apartment that we had rented. Erin really came out of the shell she was in, and had a ball with the two of them. We are so grateful to Aunt Mo and Megan, and Aunt Sara and Uncle Alex for all making the trek to Rochester to give Erin love and support.
We had dinner in the apartment with takeout for the second straight night from Victoria's. Erin announced that when in Rochester she only eats at Victoria's, which except for her hospital stay is true. It seemed that her goal was to eat half of Rochester. She ate before dinner, ate a large dinner, and then continued to eat non-stop right up until bedtime. I have never seen anything like it. I was full watching her.
I slept in Erin's bedroom and she continues to struggle at night. She is in pain at night, and has difficulty with breathing due to mucus issues. I was up most of the night, as was Sheila the night before watching over her. Yet she seems none the worse for the wear. She awoke in a great mood, we had breakfast out, and then left for the airport. The trip home was uneventful, yet remarkable in that she walked the entire way in O'Hare after we landed. She is a little slow, but determined to do it on her own. Arriving home, we found a life size Minnie Mouse balloon on our doorstep, courtesy of good friends Tim and Stacey Cavanagh. Erin loved it, and spent some time "doctoring" Minnie. I think she wanted to put Minnie through the same punishment she took in Rochester. Afterwards, she took the neighbor's dog for a walk, and then asked me to take her to our neighborhood park to check things out.
Tonight, Erin's beloved Priscilla (or as Erin has named her, "Passy") came over for dinner, and Erin was in heaven. I have never seen her more animated or funny. She was a laugh a minute. I know that one impact of heart surgery can be depression. She seems to be undergoing exactly the opposite reaction. She seems even more outgoing then she already was. She was dancing, singing, and enjoying life. All one could ask.
 |
| Breakfast out of the hospital! |
 |
| Pasta lunch before the echo |
 |
| I am done being Doctored! |
 |
| Get this echo over with! |
 |
| Breakfast |
 |
| Best Mommy ever. |
 |
| Waiting for Daddy with my ever present iPad |
 |
| Where's that airplane? |
 |
| Doctoring Minnie |
Sunday, May 12, 2013
Sunday, May 12 2013
Erin has been released from the hospital! Amazingly, three days after having open heart surgery, she was released today and we are back in our hotel. It's been a long two days since the last update.
Yesterday, she still wasn't eating, and hadn't eaten anything other than a few popsicles since her surgery. She continued to have nausea from the anesthesia and was having a hard time even keeping water down. It was decided to give her anti-nausea medicine which helped greatly. The really tough part of the day was when the chest tube and catheter was removed. A friend of mine who is a nurse e-mailed me and strongly suggested that I ask for her to be medicated prior to the procedure. Erin was given the same oral sedative that she had in the OR waiting room to calm her, and act as an amnesia drug. The procedure was ugly and very tough to witness, but it was over and she was free of the two lines, with only the line in her jugular vein remaining.
She slept for hours after this, most likely from complete exhaustion and from the sedative. When she awoke, we took a walk and hit the playroom. During the entire ordeal, Erin had rarely spoken and at times seemed almost catatonic. In the playroom, she finally started to come out of it and we saw glimpses of the old Erin. Aunt Sara and Uncle Alex has flown in on Friday to be with us for the weekend, and we all sat around a table and played games at Erin's direction. After about an hour, she asked if she could have her dinner, which we brought into the playroom to eat. She ended up eating quite a bit, which was a complete relief. She then had a great night of sleep, sleeping the entire night.
Today, the doctors decided that she could go home. We had to endure the removal of the jugular line, which was the last awful procedure. Sheila could hear her screaming down the hall. Not fun at all to have to hold her down through it. She wasn't given the sedative because it would have required another day in the hospital. Actually, I could have used it personally.
We had flown her former nanny Priscilla in for the day to surprise Erin, thinking she would need a pick me up. It was a good call because even after a good night sleep she was in a lousy mood. She was completely over the entire process, and wanted to go home right now. After Priscilla got here, her mood brightened significantly and we continued to slowly see glimpses of her old self. She is eating pretty well, and taking plenty of fluids.
She had an EKG, a chest x-ray, and then we left. Interestingly, as we were leaving there were hundreds of brightly dressed Asian people lining the entrance as far as you could see. It turns out that the Dali Lama was arriving just as we were leaving. We didn't wait to see him, but it was an interesting thing to behold.
Erin has announced that she wants to go out to dinner tonight, although she is pretty wiped out on the couch. We shall see how she feels. Aunt Mo and cousin Megan just got here, driving from Chicago. I think it will probably be take-out in lieu of going out. Tomorrow, she has an echo scheduled with the head cardiologist, and then we are dismissed. She will be on oral lasix for a week, and alternatively tylenol and Advil for pain. She will also take a baby aspirin every day for an undetermined period.
Yesterday, she still wasn't eating, and hadn't eaten anything other than a few popsicles since her surgery. She continued to have nausea from the anesthesia and was having a hard time even keeping water down. It was decided to give her anti-nausea medicine which helped greatly. The really tough part of the day was when the chest tube and catheter was removed. A friend of mine who is a nurse e-mailed me and strongly suggested that I ask for her to be medicated prior to the procedure. Erin was given the same oral sedative that she had in the OR waiting room to calm her, and act as an amnesia drug. The procedure was ugly and very tough to witness, but it was over and she was free of the two lines, with only the line in her jugular vein remaining.
She slept for hours after this, most likely from complete exhaustion and from the sedative. When she awoke, we took a walk and hit the playroom. During the entire ordeal, Erin had rarely spoken and at times seemed almost catatonic. In the playroom, she finally started to come out of it and we saw glimpses of the old Erin. Aunt Sara and Uncle Alex has flown in on Friday to be with us for the weekend, and we all sat around a table and played games at Erin's direction. After about an hour, she asked if she could have her dinner, which we brought into the playroom to eat. She ended up eating quite a bit, which was a complete relief. She then had a great night of sleep, sleeping the entire night.
Today, the doctors decided that she could go home. We had to endure the removal of the jugular line, which was the last awful procedure. Sheila could hear her screaming down the hall. Not fun at all to have to hold her down through it. She wasn't given the sedative because it would have required another day in the hospital. Actually, I could have used it personally.
We had flown her former nanny Priscilla in for the day to surprise Erin, thinking she would need a pick me up. It was a good call because even after a good night sleep she was in a lousy mood. She was completely over the entire process, and wanted to go home right now. After Priscilla got here, her mood brightened significantly and we continued to slowly see glimpses of her old self. She is eating pretty well, and taking plenty of fluids.
She had an EKG, a chest x-ray, and then we left. Interestingly, as we were leaving there were hundreds of brightly dressed Asian people lining the entrance as far as you could see. It turns out that the Dali Lama was arriving just as we were leaving. We didn't wait to see him, but it was an interesting thing to behold.
Erin has announced that she wants to go out to dinner tonight, although she is pretty wiped out on the couch. We shall see how she feels. Aunt Mo and cousin Megan just got here, driving from Chicago. I think it will probably be take-out in lieu of going out. Tomorrow, she has an echo scheduled with the head cardiologist, and then we are dismissed. She will be on oral lasix for a week, and alternatively tylenol and Advil for pain. She will also take a baby aspirin every day for an undetermined period.
 |
| Erin's step-down care room |
 |
 |
| Three beauties and Mr Potato Head |
 |
| First meal in three days |
 |
| Erin's back! |
 |
| Erin's beloved Priscilla |
Saturday, May 11, 2013
May 11, 2013
It's 4 am and since I can't sleep, it seems like a good time to update the blog. Erin slept quite a bit of yesterday afternoon and evening. She was up watching the basketball game with me for awhile, and then up again from 2 - 3 am. She was doing a great job keeping stuff down, but has had a few incidents of getting sick, including one at 2:30 am. But overall, better. She is sounding more normal. She also has her timing down pat. As soon as I drift off after making sure she really is asleep, she wakes up and calls my name. It turns out that sleeping in a hospital room in a recliner is a terrific way to solve the problem of too much sleep.
Yesterday, I forgot to mention that her arterial lines in her groin were taken out in the morning while I was back at our hotel showering. Sheila tells me that it was very unpleasant, as you would expect. When the nurse went to check the dressing yesterday afternoon, Erin was very concerned and asked if she was going to hurt her again. Broke my heart.
Today's horror will be the removal of her chest tube. Having had one, I fully remember the unpleasantness of having it removed. It has been causing Erin pain, and in the night she touched it twice and caused herself great discomfort. Having it out will be a blessing, but the process will be hell.
Interestingly, the night nurse Kim told me that she had heart surgery when she was 5. When I asked her about it, she admitted that she had the same operation (ASD closure) that Erin had. I think it was beneficial for Erin to see Kim and understand that she had undergone the same procedure so many years ago. The bad part of the story is that the one memory that stands out for Kim is the removal of the chest tube.
After that, the one remaining line she will have in is the line in her jugular vein. They have been keeping that one in to give her meds and IV's. Tonight she is on fluids to offset her inability to take in enough water. My guess is that one stays until Sunday.
The surreal part of all of this is that we came in girded for battle, expecting major heart reconstruction and all the attendant risks that goes with it, and had a relatively "routine" procedure instead. Even the head ICU nurse told me that they were all geared up for major patient care, and then when Erin "only" had the ASD closure, their position was this one's no big deal relatively speaking to what they deal with on a regular basis. In spite of the routine nature of her surgery, it still has all of the trials and tribulations of heart surgery and recovery. It is simply a tough journey that one has to go through to get to the end goal, a heart the functions more normally. It's almost like you don't know what to do with the emotions and thoughts that had built up over how difficult and challenging and frankly risky this all was going to be, especially when it turns out to be far less complicated. In the end, I have decided it is a very good problem to have.
Yesterday, I forgot to mention that her arterial lines in her groin were taken out in the morning while I was back at our hotel showering. Sheila tells me that it was very unpleasant, as you would expect. When the nurse went to check the dressing yesterday afternoon, Erin was very concerned and asked if she was going to hurt her again. Broke my heart.
Today's horror will be the removal of her chest tube. Having had one, I fully remember the unpleasantness of having it removed. It has been causing Erin pain, and in the night she touched it twice and caused herself great discomfort. Having it out will be a blessing, but the process will be hell.
Interestingly, the night nurse Kim told me that she had heart surgery when she was 5. When I asked her about it, she admitted that she had the same operation (ASD closure) that Erin had. I think it was beneficial for Erin to see Kim and understand that she had undergone the same procedure so many years ago. The bad part of the story is that the one memory that stands out for Kim is the removal of the chest tube.
After that, the one remaining line she will have in is the line in her jugular vein. They have been keeping that one in to give her meds and IV's. Tonight she is on fluids to offset her inability to take in enough water. My guess is that one stays until Sunday.
The surreal part of all of this is that we came in girded for battle, expecting major heart reconstruction and all the attendant risks that goes with it, and had a relatively "routine" procedure instead. Even the head ICU nurse told me that they were all geared up for major patient care, and then when Erin "only" had the ASD closure, their position was this one's no big deal relatively speaking to what they deal with on a regular basis. In spite of the routine nature of her surgery, it still has all of the trials and tribulations of heart surgery and recovery. It is simply a tough journey that one has to go through to get to the end goal, a heart the functions more normally. It's almost like you don't know what to do with the emotions and thoughts that had built up over how difficult and challenging and frankly risky this all was going to be, especially when it turns out to be far less complicated. In the end, I have decided it is a very good problem to have.
Friday, May 10, 2013
May 10, 2013 part 2
Erin is out of the ICU. She was moved into a private room on the same floor at just after 3 pm. Of course the timing was just after she had finally fallen into a restful nap. She only slept about 2 hours last night, and has had small naps throughout the day. The good thing is that it is now 5 pm and she has slept for the past two hours.
She continues to have difficulty in processing enough urine output, even after a double dosage of lasix. The theory is that after throwing up so much and not taking in much in the way of fluids, she just doesn't have it to give. Unfortunately, the downside is that the catheter has to stay in until tomorrow am.
She managed to keep some bites of an apple down, so that is progress. Overall, everyone continues to be thrilled with her progress. She even took a brief walk in the ICU, walking about 40 feet. It's amazing that she can do that the day after open-heart surgery. I had originally written major open-heart surgery, and edited out major when I realized that there probably is no such thing as minor open-heart surgery.
The new room is significantly larger, and has room for a cot. She has just woken up, and is talking like herself. She has had sips of both apple juice and water, and they seem to be staying down.
She continues to have difficulty in processing enough urine output, even after a double dosage of lasix. The theory is that after throwing up so much and not taking in much in the way of fluids, she just doesn't have it to give. Unfortunately, the downside is that the catheter has to stay in until tomorrow am.
She managed to keep some bites of an apple down, so that is progress. Overall, everyone continues to be thrilled with her progress. She even took a brief walk in the ICU, walking about 40 feet. It's amazing that she can do that the day after open-heart surgery. I had originally written major open-heart surgery, and edited out major when I realized that there probably is no such thing as minor open-heart surgery.
The new room is significantly larger, and has room for a cot. She has just woken up, and is talking like herself. She has had sips of both apple juice and water, and they seem to be staying down.
 |
| Asleep with Willy |
 |
| Mommy waits for news with Piggie, Erin's gift from the hospital |
 |
| Note the 98 in the lower right - that's Erin's oxygen level post-surgery. Her normal levels have always been around 84. |
 |
| In the ICU |
 |
| A very tired Erin makes the migration to the new private room |
Friday, May 10 2013
Erin continues to amaze, with a few hiccups. To start, her breathing tube was removed yesterday after being in the ICU for only two hours. It is not a pretty sight to see your child silently begging to have the tube removed, silent because they can't speak. Luckily it was felt that she was doing so great that they could take it out. Had she had the original planned surgery, it would have been in for 24 hours or longer, and she would have remained sedated for that time period.
Her biggest struggle has been thirst and hunger. As I am learning, the anesthesia puts your digestive system to sleep, and it takes time to wake up and recover. She couldn't keep any water down for most of the day, and still is having some difficulties. Hearing your child beg for water and promising that she will try really hard not to throw up is heart breaking. I spent the night in the room, and she only slept about two hours. She is complaining of discomfort from all of the tubes and wires she has in her.
She brightened up when Mommy came back around 6 am. She is eating jello and the ever present Popsicle, and trying to keep liquids down.
Dr Dearani and entourage visited this morning and was visibly happy over how well she is doing. The plan now is to start pulling lines, and tentatively move her out of ICU today into a private room. If all goes well, she could be out of the hospital in the Sunday/Monday timeframe. Given the fact that we thought she would be in the hospital for up to two weeks, this is astounding.
I will report more as we know it. And as always, we are humbled by the outpouring of support from so many friends and family. It is incredibly helpful and means so much. Thank you to each of you.
Her biggest struggle has been thirst and hunger. As I am learning, the anesthesia puts your digestive system to sleep, and it takes time to wake up and recover. She couldn't keep any water down for most of the day, and still is having some difficulties. Hearing your child beg for water and promising that she will try really hard not to throw up is heart breaking. I spent the night in the room, and she only slept about two hours. She is complaining of discomfort from all of the tubes and wires she has in her.
She brightened up when Mommy came back around 6 am. She is eating jello and the ever present Popsicle, and trying to keep liquids down.
Dr Dearani and entourage visited this morning and was visibly happy over how well she is doing. The plan now is to start pulling lines, and tentatively move her out of ICU today into a private room. If all goes well, she could be out of the hospital in the Sunday/Monday timeframe. Given the fact that we thought she would be in the hospital for up to two weeks, this is astounding.
I will report more as we know it. And as always, we are humbled by the outpouring of support from so many friends and family. It is incredibly helpful and means so much. Thank you to each of you.
Thursday, May 9, 2013
May 9, 2013 part 2
We just met with the surgeon, Dr. Dearani. Bottom line is that after fixing the ASD, which he described as a very large hole for such a small heart, no further reconstruction was necessary. The patch is the size of a dime. After fixing the ASD and taking her off the heart and lung machine, her heart performed well enough that they felt that the bi-directional glenn (the major reconstruction part) was now unnecessary. There was no narrowing of the tricuspid valve, and her heart was already much smaller with the leak eliminated. It was the best possible outcome, and clearly Dearani was pleasantly surprised by it.
He told us that perfect is the enemy of good, and by attempting to repair the tricuspid valve he could do a repair that they consider a good one that wouldn't have as good a function as she has now. So the choice was to leave the valve alone. He found enough leaflet tissue that if a repair is warranted in the future, he thinks it would be relatively easy. For now, the leakage of the value is minimal, and the existing leaflets have good function. The blood flow through her heart is now normal, for the first time in her life.
Importantly, they only split the bottom part of her breast bone, versus the entire bone. The incision is lower on her chest, and smaller. The bi-directional glenn would have required a much larger and higher incision. Scarring will be far less this way.
They are now closing, which will take roughly an hour, and then she goes directly to ICU where the team wants approximately another hour to get her settled before we can go up to see her. Dearani said that with any luck, her breathing tube can come out today. They had previously thought it could be in for up to two days. Having been through ICU hospitalization with her before, I now know enough to know that there are absolutely no guarantees, and everything is fluid. There will most likely be a great many changes to the plan ahead.
We are ecstatic over the outcome. There is still plenty ahead, but for now we have the best possible outcome that we could have hoped for.
He told us that perfect is the enemy of good, and by attempting to repair the tricuspid valve he could do a repair that they consider a good one that wouldn't have as good a function as she has now. So the choice was to leave the valve alone. He found enough leaflet tissue that if a repair is warranted in the future, he thinks it would be relatively easy. For now, the leakage of the value is minimal, and the existing leaflets have good function. The blood flow through her heart is now normal, for the first time in her life.
Importantly, they only split the bottom part of her breast bone, versus the entire bone. The incision is lower on her chest, and smaller. The bi-directional glenn would have required a much larger and higher incision. Scarring will be far less this way.
They are now closing, which will take roughly an hour, and then she goes directly to ICU where the team wants approximately another hour to get her settled before we can go up to see her. Dearani said that with any luck, her breathing tube can come out today. They had previously thought it could be in for up to two days. Having been through ICU hospitalization with her before, I now know enough to know that there are absolutely no guarantees, and everything is fluid. There will most likely be a great many changes to the plan ahead.
We are ecstatic over the outcome. There is still plenty ahead, but for now we have the best possible outcome that we could have hoped for.
Thursday, May 9 2013
The waiting has begun. Erin is currently in surgery, and they expect it to be there for anywhere from 4 to 6 hours before we see her again.
We arrived here Tuesday evening, with Erin in terrific spirits. She was as happy and animated as I have ever seen her. Wednesday began with a blood draw at 7, which she stayed completely stoic through. We then followed that up with x-rays, EKG, allergy test, echo, cardiology consult, Social Services, Child Life Services, and then an hour with the surgeon Dr. Dearani. The allergy test, conducted because she once had a reaction to an antibiotic, was challenging as they pricked Erin's arm in 8 spots twice in a row. She never reacted or flinched, but later told us just how painful it was. She is absolutely amazing. She isn't going to let anyone see her react.
Dearani has had additional thoughts about her surgery after consulting with the cardiologist who did the echo. They now have decided that fixing the tricuspid valve offers no upside and thus will be left alone. They are going to fix the ASD, and then take some time to see how she responds before they do the bi-directional glenn.
Erin was somewhat stoic throughout, and fell asleep during the Dearani meeting. She fell asleep the first time as well. I told him it must be something about him.
Erin's favorite store is Target (sorry Uncle Alex). We noticed that they had a Super Target, which really made her happy (it had to be better because it was Super). We visited and bought supplies and a princess costume for Erin, which she took great delight in wearing last night after dinner.
We had to be at the hospital today at 7. She woke up in a great mood, and had yet another bath which included the prescribed 10 minute scrub with special soap.
In the prep room, we got her dressed and spent some time hanging out. She was extremely clingy as you would expect, and very quiet. She was scared and it was excruciating as a parent not to be able to comfort her or take away the fear. The nurse took a picture of the three of us and printed it our for her. Erin clung to that picture, looking at it constantly. At 9 am, I put her on the gurney and after saying goodbye to Mommy we headed off to the OR.
In the OR, I transferred her to the operating table, and helped to take off her top. She asked for grape flavored gas (she had a wide choice...I would have taken bubble gum personally), and accepted the mask while I held her hand. She was out in less than a minute. It was only then that she let go of the family photo.
It took almost an hour to get all of the lines in her, which they don't do until she is out .At 10:14, the communicator Colleen informed us that they had made the incision. At 11:03, she went on the heart and lung machine.
And so we wait.
We arrived here Tuesday evening, with Erin in terrific spirits. She was as happy and animated as I have ever seen her. Wednesday began with a blood draw at 7, which she stayed completely stoic through. We then followed that up with x-rays, EKG, allergy test, echo, cardiology consult, Social Services, Child Life Services, and then an hour with the surgeon Dr. Dearani. The allergy test, conducted because she once had a reaction to an antibiotic, was challenging as they pricked Erin's arm in 8 spots twice in a row. She never reacted or flinched, but later told us just how painful it was. She is absolutely amazing. She isn't going to let anyone see her react.
Dearani has had additional thoughts about her surgery after consulting with the cardiologist who did the echo. They now have decided that fixing the tricuspid valve offers no upside and thus will be left alone. They are going to fix the ASD, and then take some time to see how she responds before they do the bi-directional glenn.
 |
| Waiting for Dr Dearani |
Erin was somewhat stoic throughout, and fell asleep during the Dearani meeting. She fell asleep the first time as well. I told him it must be something about him.
Erin's favorite store is Target (sorry Uncle Alex). We noticed that they had a Super Target, which really made her happy (it had to be better because it was Super). We visited and bought supplies and a princess costume for Erin, which she took great delight in wearing last night after dinner.
We had to be at the hospital today at 7. She woke up in a great mood, and had yet another bath which included the prescribed 10 minute scrub with special soap.
 |
| Getting ready to leave for the hospital |
We arrived at the hospital and Erin was given a new pink pig, immediately named Piggy. She played in the play area until 8, when we moved into the OR prep area. This was when it became very sobering for Erin. Getting on the gurney caused her to be very apprehensive, although she didn't say a word.
 |
| In the play room |
 |
| Doctoring Piggy |
 |
| Heading to the OR |
In the prep room, we got her dressed and spent some time hanging out. She was extremely clingy as you would expect, and very quiet. She was scared and it was excruciating as a parent not to be able to comfort her or take away the fear. The nurse took a picture of the three of us and printed it our for her. Erin clung to that picture, looking at it constantly. At 9 am, I put her on the gurney and after saying goodbye to Mommy we headed off to the OR.
In the OR, I transferred her to the operating table, and helped to take off her top. She asked for grape flavored gas (she had a wide choice...I would have taken bubble gum personally), and accepted the mask while I held her hand. She was out in less than a minute. It was only then that she let go of the family photo.
 |
| She was worried I was going to doctor her |
It took almost an hour to get all of the lines in her, which they don't do until she is out .At 10:14, the communicator Colleen informed us that they had made the incision. At 11:03, she went on the heart and lung machine.
And so we wait.
Subscribe to:
Posts (Atom)