tag:blogger.com,1999:blog-53908683165263508592024-03-19T08:12:23.098-04:00Brea's HeartDescribing our journey back to NYC for Brea to have the Fontan procedure.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-5390868316526350859.post-85046343762950544492011-12-24T11:14:00.000-05:002011-12-25T11:24:48.473-05:00ChristmasWe haven't put an update up in a while, but thought we should put one further post up. Since our last update, we have been trying to get back to normal as much as possible. Unfortunately, Brea got conjunctivitis last weekend. She seems to have taken it in her stride and doesn't mind having to take even more medicine each day (although she didn't appreciate the eye drops). Her father and mother have also come down with something (colds). My (Matthew) version of the sickness also seems to come with man flu. Fleur appears to have escaped sickness.<br />
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We are all enjoying our Christmas. Brea has been asking for the Christmas tree lights to be turned on almost as soon as she gets up every morning. She has enjoyed ripping open everyone's presents this morning. We wish everyone a merry Christmas. <br />
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It is hard to know what to do with this blog from here. It will most likely just sit here and not get updated. Now that we are back home and we are getting closer and closer to being "back to normal" there is little left to write about. <br />
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Here are some pictures of Brea and Fleur that you may enjoy:<br />
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<a href="http://3.bp.blogspot.com/-Ul2aG27dMFM/TvdJVivt2wI/AAAAAAAACxo/fKrHLgSwdSE/s1600/DSC06764.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-Ul2aG27dMFM/TvdJVivt2wI/AAAAAAAACxo/fKrHLgSwdSE/s320/DSC06764.JPG" width="240" /></a></div>Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-9407679013544566732011-12-12T23:12:00.000-05:002011-12-12T23:12:50.190-05:00Follow UpAfter arriving home on Friday evening, we got the weekend off. Today (Monday) we had our first follow up appointment at Cincinnati (actually the outpatient centre in Northern Kentucky). The good news is that everything went well. Brea had an ekg and echo and they were happy with both. We also had to get blood drawn as her Warfarin levels are still not settled (we are still waiting for the results). <br />
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The policy at Cincinnati regarding warfarin is the same as at Columbia. That means that we will be on Warfarin for six months before switching over to aspirin, which she will be on for the rest of her life. Apparently it is quite controversial in the medical community as to what is the best drug/course of action in this situation. Some doctors are pro-warfarin and some doctors are anti-warfarin. The course of action following the Fontan differs across institutions. [For those who have no experience with warfarin/coumadin -- it is not a pleasant drug: (i) it doesn't taste nice, (ii) it requires much care to ensure the dosing is correct, (iii) the dose needs to change if the patient is sick/on antibiotics, etc, etc, and (iv) it thins the blood so that care needs to be taken to ensure there are no falls, etc, to prevent internal bleeding.]<br />
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We are scheduled for another follow up appointment in the week between Christmas and New Year.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-3944134055184030102011-12-09T23:35:00.001-05:002011-12-09T23:38:14.343-05:00HomeWe arrived back in Lexington tonight. It is good to get home (and even better to have friends collect some groceries and dinner for us). The next couple of days will consist of trying to get everything back to normal before heading to Cincinnati on Monday for a follow-up with her cardiologist there.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-56442928259188719282011-12-08T21:54:00.001-05:002011-12-09T07:38:27.155-05:00TravelsThis morning we said goodbye to New York once again and started our trip back to Lexington. Despite wanting to get home, both of us are a bit sad to leave. We have some great friends there and love our church (trinity grace). We are spending the night in Cumberland, MD.<br />
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We are very lucky that both Brea and Fleur are good travelers. Fleur slept the whole trip. We stopped at Cabela's on the way. Brea enjoyed looking at all of the animals. Our trip tomorrow is a little longer, but it should be a little quicker to pack up and get on our way.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com1tag:blogger.com,1999:blog-5390868316526350859.post-69530246376818805772011-12-06T21:35:00.001-05:002011-12-06T23:16:38.305-05:00Follow up #2 (more pie?)This morning we had another follow up appointment with the cardiologist. Once again, she was happy with how Brea has been progressing. She has further lowered the amount of diuretic, which continues to make things a little easier. The big news is that she has given us the all clear to head back home! Brea's parents celebrated the news with a pie each for lunch. I was quite offended when the (Australian) lady working in the pie shop called me "a true Aussie". <br />
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While we are obviously very happy that Brea has recovered to the point where they are satisfied to send us home, it is a somewhat strange feeling. All of a sudden there is nothing ahead of us except the unknown. We have no more surgeries to plan for (in many ways safety nets for if things don't quite look right in between surgeries). While this is (mostly) a good thing, it is also a little scary. If "things" develop from now on, there are very few avenues left open to the doctors to help fix Brea. The cardiologist mention one such "thing" this morning. For reasons that are not well understood, children after a Fontan operation at are risk of losing protein from their systems. This appears to be a fairly serious problem based on the reading I have been doing this afternoon. It occurs in approx 10% of Fontan patients anywhere from a few weeks to a few years after the surgery. While there are some options for treating this problem, in many cases the only effective treatment is a transplant.<br />
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All in all, we are very pleased to get the all clear. We are most likely going to start the trip on Thursday and hope to arrive back home on Friday. We are looking forward to getting back to some resemblance of a routine, trusting that God knows best and has a plan for little Brea.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-65269873664465321102011-12-05T22:30:00.001-05:002011-12-05T23:19:44.603-05:00Slow and steady progressIt has been a few days since we have written anything. The biggest reason for that is that there has been very little to write. Brea does not have another appointment at the hospital until tomorrow morning. She has slowly been improving over the last week, getting more and more herself. Unfortunately the low-fat diet has been a struggle. She has almost constantly been wanting to eat. It gets quite difficult to find enough variety to keep her going. Luckily I found some low-fat mac and cheese which she has enjoyed the last couple of nights for dinner which has broken the constant grilled chicken and fish diet. She has also eaten her fair share of crackers with marmite over the last few days.<br />
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During the past week we have been trying to get back to a somewhat normal life. This has included a couple of trips to the playground. Today we visited the 9/11 memorial in the morning (as well as showing Brea the statue of liberty in the distance from Battery park) and then went to the Christmas tree at the Rockefeller plaza after dark. We have also managed to catch up with a few people over the last week. For those who saw Brea in the hospital, they have been surprised in her improvement now that she is out of hospital.<br />
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Fortunately Brea's parents have been able to avoid the low-fat diet. Shake shack (<a href="http://www.dailymail.co.uk/travel/article-1353847/Shake-shack-worlds-best-burger.html">burgers</a>) has been well frequented, and we have also enjoyed an Australian mince (meat) pie for lunch (we also shared a sausage roll too because the pie was so good. Bronwyn was adamant that I shouldn't have a pie and a sausage roll. She apparently felt quite strongly about it as she provided a reasonable amount of help in eating it). We are both wanting another pie (or maybe a dozen) before we head back to Lexington. On a related topic, I signed up to run a half marathon in late march. As you can see my training has started splendidly. I left my running shoes in Lexington. In their place: burgers and pies.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-62893091320390515842011-11-29T18:26:00.001-05:002011-11-29T20:21:43.255-05:00Follow Up AppointmentThis morning we had Brea's first follow up appointment after being discharged on Saturday. The day consisted of (i) an ekg, (ii) an echo, (iii) blood draw (for all three of us), (iv) an x-ray, and (v) a chat with the doctor. The good news is that the doctor was really happy with (i)-(iv). She thinks her Fontan "looks great" on the echo. Her oxygen saturation was sitting at 96-97% and her x-ray looked ok. As a result, they have slightly lowered the dose of diuretics that Brea is on (these are making the transition back to using the potty particularly difficult), although she expects Brea to still be on the diuretics for another 3-6 months. We have another appointment next Tuesday.<br />
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The only unfortunate thing is that they have yet to stabilize her warfarin dose. That means another trip to the hospital on Thursday morning for another blood draw. Hopefully they can stabilize that soon so that Brea doesn't have to get poked every second day. Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-6081629472609249612011-11-27T20:55:00.001-05:002011-11-27T22:05:12.579-05:00Big differenceWow. What a huge difference it makes to be out of a hospital. Brea has been eating better, drinking better, walking better, interacting better. It has made a big difference. Unfortunately we are back at the hospital the next two days (Monday for blood letting and Tuesday for echo, ekg, x-ray follow up). We are hoping to get a better idea of how the follow up in NYC will look at the Tuesday appointment. At this stage we are unsure exactly how long they want us to stay around the city.<br />
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Just a short update tonight. We will try and keep you informed as we learn more at the coming appointments.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com1tag:blogger.com,1999:blog-5390868316526350859.post-12743096573080403792011-11-26T17:02:00.001-05:002011-11-26T22:42:48.444-05:00Battered, bruised, broken and FREE!As with every other day over the last couple of weeks, today has been an emotional roller coaster. It started with the wake up call from the blood lady (the lady who draws blood from Brea). Over the last couple of days this task has become progressively harder as Brea's little arms are an assortment of bruises and IV lines, making it hard to find a suitable vein to draw blood from. I found it very difficult today encouraging Brea and felt like I had nothing left to give. I had no words, all I could do was hold her hand, stroke her hair and place my face next to hers as they drew her blood (while she repeated over and over "it's not going to hurt").<br />
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When the nurse visited us a short while later, she had mixed news. The good news was that it was likely that Brea would be discharged today. The bad news was that they didn't get enough blood to test her INR (a measure of the thickness of the blood). This means they would have to draw more blood to know how to dose her warfarin in order to send us home. The repeat visit drained me of my already low reserves of encouragement. The nurses had to continually adjust the needle to make sure they collected enough blood.<br />
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More mixed news came later. The x-ray taken this morning looked great, but the INR level was below the range they want it in. The nurse told us that this meant we would be staying in another night. It would be an understatement to say that this news left us a little deflated. An hour later, the doctors came to tell us that we could actually go home (fortunately doctors overrule nurses), provided we come in on Monday to get more blood drawn to re-dose her warfarin. <br />
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Brea ended up getting discharged sometime between 3pm and 4pm (the time is a little hazy as we had accumulated so much stuff in the hospital room that we had to make a couple of trips). It was a strange feeling walking outside with all four of us at the same time. Since Brea went in for her surgery, there have only been a couple of times Bronwyn and I have left the hospital at the same time. <br />
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It was remarkable to see the difference in Brea solely from leaving the hospital. Before we left, she did not want to walk and was not talking near as much as she does at home. Within moments of getting back in the door here, she said "out of the stroller" and she walked over the sofa and climbed up on it. <br />
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Eleven days after the surgery it is amazing to see how battered and bruised Brea's body is. Her incision has healed remarkably in such a short time (as have her drainage holes). However, her thighs are completely wasted from the tape they used to hold the central and arterial lines in. As mentioned above, her arms are very bruised from numerous needles and IV lines. Her torso (aside from her incision) is covered in red marks and sticky residue from all of the monitoring equipment that they use in the hospital. She is definitely the bravest little girl I know. <br />
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It is probably no surprise that Bronwyn and I are both emotionally (and physically) exhausted. The clearest example of this was with visitors who would come to see Brea (we loved having you all and appreciate very much all of your kindness). I was so emotionally spent, I felt removed from reality and most of the time didn't know how to make conversation. In many ways, I think that Brea will recover from this surgery faster than her parents.<br />
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Once more, we just want to thank everyone who made this experience much easier than it could of been. This includes all of you who have been thinking and praying for us, as well as the many of you who have supplied us with meals, looked after Fleur, let us borrow toys/baby gear, or let us stay in your apartment. We will always be thankful for what you have given us.<br />
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Here are another couple of photos. One was taken last night of Brea and Fleur in Brea's bed. The second was taken tonight and is of Fleur helping Mum write emails on the ipad to let people know that we were out of hospital.<br />
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<br />Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com2tag:blogger.com,1999:blog-5390868316526350859.post-64625191456548080652011-11-25T15:54:00.001-05:002011-11-25T21:34:50.663-05:00One day closerIt appears as if Brea will be discharged tomorrow. Almost everything seems to be improving at this point. She has had two x-rays this morning, both of which the doctors were very happy with. She is also walking better. She still doesn't like it or want to do it, but at least she is complaining less and has even walked on her own a couple of times (we don't generally get any further than 10m in a go at the moment). <br />
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The big remaining challenge is her eating and drinking. We both thought she has been eating and drinking much better, but the nurse has just came in and told us that she is starting IV fluids as her chemistry appears a little dehydrated. So this is something that we will have to keep a pretty close eye on if we are discharged tomorrow.<br />
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Other than that there is not much in the way of news. Below are a few photos of Brea and Fleur. Most of them are happy photos except one which shows a fairly familiar face whenever someone wants to do anything to Brea.<br />
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<br />Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-41365720226561953042011-11-24T11:58:00.001-05:002011-11-24T16:58:05.609-05:00Thanksgiving DayWe're another day closer to discharge and things are looking pretty good this morning. Brea got some good sleep last night - which is sometimes hard to come by in a hospital!<br />
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She had an x-ray this morning and it was clear :) So the fluid that gushed out last night was obviously a quick way to rid her lungs of the remaining fluid there.<br />
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They have also been cutting back Brea's oxygen and have just stopped it entirely this morning. So no more nasal canula and no more yucky tape on Brea's face.<br />
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We have been up and about this morning. Brea seems a bit fearful of getting out of bed so we took her for a walk around the unit in her stroller. Then we got her out to walk on her own but she was not happy about that. We encouraged her to walk a few metres from her stoller to a chair and then back again. This must have been quite tiring as she is back in bed and asleep now. <br />
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The Dr's have mentioned Saturday as a possible release date. Before then we have to make sure her warfarin dose is sorted out and we have her blood the right thickness. And we also have to get her eating and drinking. The Dr's are not too happy with her appetite or fluid intake. We've told them she's never been a big eater or drinker at home, but they're still not happy. She seems pretty bored of the hospital food, but we brought her in some Marmite this morning and she's eaten a big cracker covered with Marmite :)<br />
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A few of you have asked after Fleur. She is with us in NY. We have had amazing help babysitting her and bringing her back and forth so that Bronwyn can feed her (thanks to the Tyson family and the Ryness family) We are also very lucky as Fleur is a very relaxed baby and does not fuss much. Since Fleur cannot stay at the hospital overnight, her and Bronwyn head back to the apartment where we are staying a couple of blocks from the hospital. Bronwyn is also extremely thankful that Fleur has
just figured out how to sleep for a looooong time :) The last three
nights she has sleep for about 8-9 hours each night!!!<br />
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This thanksgiving we have much to be thankful for. If Brea had of been born in our generation she wouldn't have made it out of her first week. We are so thankful that the surgery was successful and that Brea appears to be making a good recovery. Yes, there have been a few bumps along the road, and will no doubt be plenty more, but it is good to see our little girl become more and more herself every day. We are also very thankful for our friends and family. You have helped to carry us through the last couple of weeks, some of you with your practical support, and many of you in prayer. Having to hand your child over to have open heart surgery is a lesson in how our children are not really our own. Instead they are precious gifts that we have the chance to raise (and hopefully teach them something). This thanksgiving we are most thankful that we have both of our precious gifts for another day. <br />
<br />Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-49077374952925826922011-11-23T22:15:00.001-05:002011-11-23T22:39:04.942-05:00LeakyAbout 5 minutes after the previous blog post, we sat Brea up to have a drink of apple juice. As she was drinking, Bronwyn exclaimed "you are peeing out of your diaper" (after our stint in hospital it looks like we are going to have a battle to re potty train Brea, but that is another topic entirely). After a few moments contemplation we realised that the fluid was actually gushing (no choice this time) from the spot where the drainage tube was coming out of the left lung. This drainage tube was removed a couple of days ago (the dressing was downgraded to a band-aid this morning) so it was a bit of a surprise. A cardiologist came and dressed it again and want us to keep Brea as still as possible (which is currently easy as she is sleeping). Someone from the surgery team will come and check on it in the morning. We are not really sure what the implications of this are, but thought some of you might appreciate knowing this.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-4043239210927255532011-11-23T20:33:00.001-05:002011-11-24T00:16:29.169-05:00Another dayIn a relative sense, today was quite an uneventful day. Unfortunately, we are in a shared room and our neighbours provide an equal dose of entertainment and headaches. Between the snoring and the them all waking at 5am, there was not as much sleep to be had as we would have liked. There was also a good barney when the wife woke the father to help her with junior.....<br />
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Brea also woke at about 230am crying incessantly. She wouldn't talk to me or communicate in any way. Eventually the nurse came in and she ended up giving her some morphine that helped her sleep through the rest of the night. <br />
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Her last remaining drainage tube had not really drained anything so they removed that late in the morning. Unfortunately, the reason it stopped draining is because it was blocked. Once they took it out, a lot of fluid came oozing/gushing (you choose) out. A couple of hours later they took an x-ray to see if there was any fluid left in there. They were quite pleased that all of the fluid appeared to have come out. The removal of the final tube marks the point from which Brea has to remain on the fat-free diet for another two weeks.<br />
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This morning Brea also had her "discharge" echo. I think they were pretty happy with the pictures and her heart appears to be doing everything it should be doing.<br />
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There are a few things they want to clear up before they will let us break out. One of those is that there is still some fluid in the left lung. They want Brea up and moving around as much as possible to get her lungs opened up to get rid of this fluid. Unfortunately, Brea doesn't seem thrilled about the prospect. Every time we suggest a walk there is a period of "No, no NO!". We have managed to get her up 2-3 times and while not enjoying it, she seems to be doing quite well. If we could get to the point where she wants to get up and walk, I think we would make good progress on this front.<br />
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Another thing is the oxygen she is receiving. Fortunately, she is down to quite a low amount, so hopefully we can ween that off tomorrow.<br />
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The final thing is her fluid intake. They are wanting her to drink more, as they are a bit concerned she is not drinking enough. They had to give her IV fluids last night and I think they are going to give her more tonight. Brea has never really drunk a lot, so I am not sure how well we are going to do on that front.<br />
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All in all, it is quite positive. Hopefully, provided progress continues, we should be able to leave in the next day or three. They have warned us that they will be following up with us pretty closely, particularly with x-rays to make sure the fluid is draining.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-1843026101981274842011-11-22T18:26:00.001-05:002011-11-22T18:43:28.909-05:00We are out of the ICUThey ended up taking the two lines out of her groin at around 2:30pm. Brea did not like it. However, as we hoped, she has been much happier since they have come out. It wasn't long before she had a big cuddle with Mum before heading back to bed (Dad had a cuddle a couple of days ago which caused some problems with her lines). They are wanting to get Brea sitting up as much as possible as this opens up her lungs. The problem is that it tires Brea out, so it is a bit of a balancing act at the moment -- trying to get her moving without exhausting her.<br />
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It wasn't long after we got the lines out that we had confirmation we were getting the boot from the ICU. Initially our nurse thought we might stay there tonight because "we like you, and you never know what the next one coming in will be like", but obviously someone higher up didn't share his opinion. We ended up moving at about 5pm.<br />
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Just to show that we will complain about everything, we are a little worried about our move. While it is a major step in Brea's progress to move out of the ICU, we have found the care on the 6th floor somewhat lacking in the past. On one occasion after ringing the call button we had to wait 45 minutes for the nurse to arrive. On another occasion they forget to deliver us dinner. When we asked, it took them around 2 hours to ferret for some cheerios. <br />
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One bonus is that tonight they had an early thanksgiving meal (in both the ICU and down here on the 6th floor). We have a lot to be thankful for, even if we will (probably) spend thanksgiving day in the hospital.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-53008549807072123602011-11-22T14:11:00.001-05:002011-11-22T14:12:36.912-05:00Take threeIt turns out they stopped the heart medication at around 10-11pm last night. Overnight her lactate values were good, so they are going to take all of her lines out. They are planning on taking them out as soon as she wakes up. Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-31680353091244528242011-11-21T21:25:00.001-05:002011-11-21T22:11:06.694-05:00Patience, patienceIt looks like we will need some patience. After giving Brea some fluids her lactate readings stayed the same. They decided to give her more fluids to see what happened. After the second round of fluids the lactate values came down substantially. Despite this, the doctors decided to also put her back on the heart medication. She will likely stay on the medication for another couple of days and we will repeat the "lets try and get her off the medication and out of the ICU" process all over again in a couple of days.<br />
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We are in two minds about this. On one hand, it is a conservative approach that should ensure that once she comes off the medication and the lines are removed, she will not need lines to be put back in and medication restarted. On the other hand, it is disappointing that we are going to have another couple of days where Brea will have to stay in bed and will not get the chance to get back on her feet. It basically continues to delay her recovery.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-32064290949668273762011-11-21T16:15:00.001-05:002011-11-21T16:33:32.487-05:00Latest lactate readingUnfortunately Brea's lactate readings have been increasing since going off the drug. This is continuing to puzzle the doctors as everything else is suggesting good blood flow. The current plan (currently in progress) is to hit her with fluids to try and determine whether Brea is just dehydrated, or whether her heart isn't pumping as well and she needs to go back on heart medication. They will take the reading at 5pm. I think everyone is hoping that the fluids will reduce the lactate levels.<br />
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Either way it looks like (i) the lines in Brea's groin will still be in for a while, and (ii) we will be in the ICU for at least another night.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-44577228750275258842011-11-21T14:21:00.001-05:002011-11-21T14:26:29.089-05:00Take twoThis morning at the rounds they decided to take her off the heart medication that is helping her heart pump. How her lactate levels react to coming off this will potentially play a big role as to where we head next. She went off the med at 11am. Unfortunately, the latest lactate value (at 2pmish) was quite a bit higher than the lactate value at 11am. At the moment we are playing a wait and see game. They will draw more blood at 3pm and hopefully her lactate levels will be heading in the right direction.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-36776686849736965692011-11-20T22:00:00.001-05:002011-11-20T22:11:33.381-05:00A brighter afternoon/eveningWe have been getting used to Brea getting scratchier and scratchier as the day progresses. Fortunately, she didn't follow this pattern tonight. Instead she actually starting smiling and laughing and being much more like herself. She started singing and reciting nursery rhymes and books, etc. She has also started eating a lot more.<br />
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The lactate levels are still causing us some bother. I never did find out what the lab reported the lactate value to be, but her levels were all over the place all day. They would decrease as they wanted and then suddenly jump back to the level where we all started. The cardiologists came and did an echo to look at her heart function and concluded it looks "pretty good". So the current theory is that the high lactate values are caused by dehydration. So they have given her some IV fluids. The plan (which of course is likely to change) it to keep a track of the lactate values through the night and try and take her off the heart medication in the morning again and see what happens. As far as I can tell, we will remain in the ICU until they are happy with her lactate values.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com1tag:blogger.com,1999:blog-5390868316526350859.post-39056904660824859162011-11-20T11:05:00.001-05:002011-11-20T11:35:43.976-05:00Lactate levelsI have no idea what these things are, but they are causing us problems. Everything else seems to be going well: (i) she had the left drainage tube removed this morning, leaving on the right tube in (the one that was inserted a couple of days post-op), (ii) she is eating better, she had cheerios and yogurt this morning, much like a usual breakfast for her, (iii) she is down to minimal oxygen, and (iv) she is seeming more herself. She was telling me this morning that she can see the water out her window (the Hudson river) and can also see birds flying around.<br />
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The lactate levels, however, are a little perplexing. They were the reason she was not moved yesterday, as her values were too high (and increasing) and so they put her on a drug to improve heart function. At the rounds this morning, they said her lactate was down to 0.9 (it was 2.7 and they like it under 1). However, at the next blood draw her lactate was reading 2.9. They run it on three different machines and found values between 2.2 and 2.9. They also sent a sample to the lab and the lab results came back without a lactate value...Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com1tag:blogger.com,1999:blog-5390868316526350859.post-84833726395236899272011-11-19T18:35:00.001-05:002011-11-19T18:40:46.405-05:00Still in the ICUIt appears that we will not be moving from the ICU today. She was booked to move. The nurse was busy preparing everything and the head lady from the sixth floor came and gave us information. They just wanted to monitor her lactate levels (apparently a measure of heart function) before she moved down. Unfortunately, these values were too high and kept getting higher throughout the day. This means that Brea has just had to go on a drug to help her heart pump (she was on it earlier). This means that she will not be moving off the ICU tonight. It also means that her central and arterial lines will stay in which means that Brea is unable to move for the time being.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com1tag:blogger.com,1999:blog-5390868316526350859.post-5352232349331299032011-11-19T12:43:00.001-05:002011-11-19T12:53:23.783-05:00More progressWith a bit of effort, Brea did seem to sleep last night (with a few interruptions). With that, she seems much more positive this morning. She is still far from herself, but at least appears to be moving in the right direction. She has been doing some eating (mostly yogurt) and drinking a bit of milk. She is also interested in reading books again.<br />
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More good news is that it appears that we may be moving off the ICU and to the general pediatric cardiac ward. It is supposed to happen today once they are happy with a couple more things. They also took one of her drains out today (the central drain) so that is another positive sign. The next steps are to try and get her moving once her arterial and central lines are removed. She is quite congested and they hope that moving will help her to cough/clear a lot of that.<br />Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-79301998743671359802011-11-18T23:15:00.001-05:002011-11-19T12:54:26.270-05:00Morphine aids sleepThey ended up giving Brea another dose of morphine at around lunch time. It didn't take long before Brea was asleep. She slept most of the afternoon. Unfortunately, this meant that we spent a lot of time sitting beside her bed while she was asleep, and then she was probably awake when we had some dinner tonight and were not here.<br />
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The morphine appears to have now worn off. She is clearly not enjoying her hospital visit. For the last 30 minutes of so, she just whimpers/cries out every couple of seconds or so and will not say a word. This makes it very difficult to know what to do. Is she in pain? (the nurse doesn't think so). Is she just sick of being stuck in a bed not moving with things stuck in her body? She has just fallen asleep again, hopefully for the night.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-36371126210748574802011-11-18T11:52:00.001-05:002011-11-18T12:02:14.465-05:00A positive start to the dayAt about 1am last night they decided to give Brea some morphine (she had no pain medication most of the day). This seemed to help Brea sleep through the night. This morning she seems to be doing much better (although in saying that they have just given her some more morphine). They have reduced most of her medications and oxygen and she is now allowed food (but still on the fat free diet). She has had some fat free milk to celebrate. We are about to head out for a walk as we expect she may sleep for a while and it is a beautiful day here in the city.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0tag:blogger.com,1999:blog-5390868316526350859.post-84974783109943478772011-11-17T23:13:00.001-05:002011-11-17T23:13:42.664-05:00Little changeJust a quick note before I attempt to grab some sleep for the night. There has been little change from the last post. Brea continued to be quite unsettled for the rest of the afternoon/evening. We are all hoping that she can get a good nights sleep and we can all wake up ready to face another day.Matthew and Bronwyn Schofieldhttp://www.blogger.com/profile/11706234081908415219noreply@blogger.com0