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.
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| Great attitude |
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| Aunts Colleen and Mo, Uncle Mike and cousin Megan |
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| Note the 100 in the upper right - finally after a lifetime of 84's |
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| 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.
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| Breakfast out of the hospital! |
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| Pasta lunch before the echo |
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| I am done being Doctored! |
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| Get this echo over with! |
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| Breakfast |
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| Best Mommy ever. |
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| Waiting for Daddy with my ever present iPad |
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| Where's that airplane? |
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| Doctoring Minnie |
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