Doctors and More Doctors

Since coming home from the hospital, Callie has been pretty busy with doctor appointments. First she visited with the surgeon who performed her surgery; he pronounced the surgery a success. Maili accompanied her to that appointment, and they spent most of their time telling each other jokes and whispering secrets, much to the amusement of the nurses. They have become even closer since Callie came home, if that's even possible. They were already inseperable, but now they tell each other many times a day how much they love each other, and they are so sweet together, always touching in some way even when they are relaxing at home.Maili talked MeMe into buying them Best Friends necklaces which have matching pieces that fit together-she couldn't wait to give Callie hers when she got home, and both of them have worn them every day since. They truly are the best of friends.
Callie's next appointment was with her pediatric cardiologist, who was very pleased with her recovery and wants to see her again in a month. Her heart is doing great, and right now the biggest concern is her lung, particularly the right one. She was diagnosed with a hypoplastic right lung, a result of the damage caused by the veins in her heart draining to the wrong place. It was originally thought that they would have to remove 2/3 of that lung; thankfully they decided to go ahead and just repair the heart to see if things might improve. The risk of pnuemonia is still pretty great if she gets a respiratory infection of any kind, so her cardiologist felt that it would be best for her to remain at home for awhile longer instead of returning to school and thus increasing her risk. Callie is disappointed that she isn't able to return to school yet, but she does seem to understand that she needs to stay home for awhile so that she won't get sick or hurt her incision, which hasn't completely healed yet. She was able to attend her dance class on Saturday, where she was supposed to sit on the sidelines and watch since it was one of the final rehearsals before their upcoming performance. However, Callie had other ideas, and I had to remind her several times that she was supposed to be WATCHING, not dancing.
It looks as if there may be a few more doctor appointments in her future anyway; we met with a geneticist while she was in the hospital who confirmed what we already suspected: Callie was given a diagnosis of VACTERL association. Basically this is an association of birth defects which tends to occur together. It is not considered to be a syndrome, mainly because it is still unknown which genes cause it to occur, and the treatment simply involves treating each medical issue separately.
In order to be diagnosed with VACTERL a person has to have three or more of the features associated with it:
Vertebral anomalies
Anal atresia
Cardiovascular anomalies
Tracheoesophageal fistula
Esophageal atresia
Renal (kidney) abnormalities
Limb defects
We were already aware that Callie had several of these, and the remaining ones will need to be tested for and ruled out. We were able to get a renal ultasound done while she was still in the hospital, and her kidneys do appear normal, thank goodness. There is some concern that she may have a tetered spinal cord, and she will undergo an MRI in the near future to rule that out.
Even though some of those things might sound scary, the reality is that Callie is a normal, happy, healthy little girl, and that is the reason I felt the need to share this information. Many people considering a special needs adoption might be scared away by a medical file which looks overwhelming on paper. And in the beginning, so were we. But that leap of faith turned out to be one of the best decisions we ever made for our family, and we wouldn't change a thing.

Home Sweet Home

After some unexpected issues involving medication, Callie was finally released to go home around lunchtime yesterday. Evidently, the medication she is taking for her pulmonary hypertension (hopefully temporary) is not readily available at a pharmacy near us, and the hospital was only able to secure us a week's supply. She has to take it every 6 hours around the clock for awhile so they wanted to make sure that we would be able to get it before they released her to go home. Finally, they were able to work something out and we were on our way, with Callie clapping gleefully all the way out the door. As far as childen's hospitals go, Egleston is a wonderful place, but we were all more than ready to go home and sleep in our own beds. We arrived home to discover that Maili had done a little decorating, with some help from Aunt Kelli, Lacey, and MeMe. Callie was so excited to see everyone and to see the welcome home posters with her name all over them. They did such an awesome job of keeping Maili and Holt occupied that I don't think they even missed us while we were gone; to them it was like one big slumber party. We are so grateful that they were here to take care of everything at home so that we could focus on Callie's needs. Between Jamie's family and our church family, we were blessed to have all of our needs met. People from church delivered food in our absence, and tonight not only did they bring dinner but we found out that they will be providing dinner for the rest of the week. This was not only a pleasant surprise but a true blessing; we arrived home yesterday to find that our 14 year old range had died an untimely death. It will probably be the end of the week before a new one can be delivered, so we are so thankful for those who have been so gracious and helpful to us when we needed them most. Callie has continued to amaze us with how fast she is improving; I actually had to insist several times today that she stop dancing because I was afraid she would injure herself. She's on some pretty effective pain meds and she doesn't seem to realize her limitations. If she doesn't slow down I may be forced to cut back on them a bit before she hurts herself. Her doctors told us to treat her incision area like a broken bone for the next 6 weeks since that is essentially what it is; they had to cut her breastbone in half to perform the surgery and then wire it back together. Callie, however, didn't get the memo. She thinks that she can do whatever she wants to do, and she has no intention of slowing down. We're wondering if her newfound energy is the result of her heart finally working at full capacity; since the repair it seems that she doesn't actually tire as easily, other than the pain from the incision which slows her down when the meds wear off. It is obvious that her lungs are still very weak, and she is still very congested and on frequent breathing treatments. Her nighttime coughing has improved somewhat, but she still spends a lot of time coughing during the day. Hopefully this will improve once she has some time to recover. We had been concerned about pnuemonia, but her chest xrays were clear when she left the hospital and we hope to keep them that way.

Almost ready to go home

Last night was much, much better,and for the first time since Wednesday we all actually slept through the night. As much as anyone can sleep through the night with nurses coming in and out at all hours, that is. Who draws blood for lab work at 4:00 AM anyway? I mean, really, that's just a cruel way to wake someone up. But aside from the random interruptions all was well, and Callie awoke in good spirits, expecting to go home today. In fact, we all did, and we had our bags packed and ready to go by 10:00. But alas, it was not to be. Every time they would try to wean Callie off the oxygen, her ox sats would drop, causing them to have to start all over. It wasn't until about 8:00 tonight that she was able to come off of the oxygen completely, and by then we had figured out that she wasn't getting discharged today after all. But the good news is, she has been at 100% since coming off the oxygen, so unless things go terribly wrong during the night we hope to get out of here early tomorrow. In spite of the oxygen issues Callie had a really good day today, and she spent most of it out of bed and moving around. Her teacher came to visit her and brought goodies, and she spent much of the afternoon playing with her new toys and working on a 150 piece puzzle in the playroom, which she was determined to finish and finally did about 7:00 tonight. She was also feeling much more sociable, so she spent a lot of time on the cell phone and on skype calling all of her friends and family.
The hospital had some therapy dogs who came to visit the patients, so we went downstairs for Callie to meet them. Evidently she hasn't completely overcome her fear of dogs, because she would only pet the ones who looked familiar to her. One was a golden retriever who looked just like our Chloe, and the other one a shitzu who resembled Aunt Shari's dog Kipper. Callie ate very well today and was back to her usual sassy self, sticking her tongue out at me when I was trying to take pictures and doing silly poses. It's good to see her acting like herself, she's been in so much pain over the past few days. A few times she would actually start yelling at us in Chinese, and could only speak in one or two word sentences or baby talk.

It would have been funny if it wasn't so sad, it was almost as if she was in so much pain she forgot how to speak English. Her English has progressed so far since she has been home and she is so completely fluent that we forget that she has only been speaking English for a little over four months. It's so amazing to think that mere months ago she was living in an orphanage with a damaged heart, no mommy and daddy to take care of her, and very little hope for her future. Now her heart is repaired and she is surrounded by people who love her and can't imagine life without her. And best of all, she can look forward to a long and healthy life. Talk about happy endings, it doesn't get any better than that..

On the road to recovery and the GA Bulldogs

After another VERY long night trying to regulate her oxygen levels and pain meds, Callie finally did end up having a pretty good day. Her monitors kept going off during the night because her oxygen levels were dropping, and the nurses finally figured out that when the pain meds started to wear off she would compensate by taking short, shallow breaths instead of deep ones because it hurt to breathe too deeply. Once they removed the chest tube which was the main source of her discomfort, she seemed to be feeling much better. We still haven't been able to convince her to eat more than a couple of bites, and that is something which will have to change before they will release her to go home.
We did finally manage to convince her to put some clothes on, and just in time, since the GA Bulldogs football team was visiting the hospital and a pile of them showed up in her room shortly thereafter. She posed for pictures with them and gave them some shy smiles, but they weren't able to convince her to talk to them. Which was funny, because about 10 minutes after they walked out, she started yelling GO, DOGS! I think Jamie was more excited to meet them than she was, since he is a huge fan.
After meeting the team, Callie was ready for a nap, since we were all running on about 4 hours sleep. I had tried to let Jamie get a little sleep while I stayed up with Callie, but it didn't work out that way. . Once they finally got her settled after one episode, I headed for my so-called bed to try to catch a little sleep before the cycle started again. In my exhaustion, I flopped face first on lounge chair thingy with the pull out mattress. Unfortunately in my haste I didn't notice that the mattress had slid out from the chair, so that when I landed the mattress began to flip over my head, dumping me toward the floor. I caught myself on one hand and yelled for Jamie to help, but by the time he woke up enough to realize what was going on it was too late, and I hit the floor face first with the mattress on top. For some reason the whole situation struck me as hilarious (probably the result of sleep deprivation) and I couldn't stop laughing long enough to get up, since I was pinned to the floor by the mattress between the two chairs. Once he figured out I was ok, it struck Jamie as funny too and then Callie joined in, causing it to take much longer for me to get up but providing some much-needed comic relief during a very stressful night. At that point it was 3 AM and we were up for the duration, since Callie's pain cycle/low oxygen cycle started back shortly after that.
Fortunately Callie's health and her mood seemed to improve rapidly once the chest tube was out, and she ended up having a pretty good day. Hopefully she will sleep more comfortably tonight and we can all get some sleep. I know, I said that last night, right?

Happy Thanksgiving

I won't say that today was the best
Thanksgiving we've ever had, but it certainly has been one of the most memorable and the most thankful. Thankful because our beautiful girl is on the road to recovery and her heart is working perfectly. Thankful because she's been given a chance to live a long and healthy life, a life which
would not have been possible for her had she remained in China. We are so thankful and blessed that she is part of our family, and that, God willing, we will be blessed with her sassy
little presence for a very long time. We can tell that she's feeling much better today because our opinionated little diva is back in spades. In spite of the fact that I bought her several new pairs of princess pajamas just for her hospital stay, she has steadfastly refused to wear any clothes since her surgery; preferring to stay in her underwear all day with the covers kicked off, no matter who comes to visit. This child who is ordinarily so modest that she won't take off a shirt for me to iron unless the door is closed and locked has suddenly decided that clothing is an abomination, go figure. We're hoping she gets over this before time to go to the playroom tomorrow, or it might get embarrassing.

She finally got transferred out of ICU to a regular room today, where she was able to see Maili and Holt as well as MeMe and Pa , Aunt Kelli and cousin Lacey. Her first Thanksgiving might have been spent in the hospital, but she was surrounded by her family and that is what is most important. We were anticipating having to suffer through hospital cafeteria food for our Thanksgiving lunch, but we were pleasantly surprised to learn that a local family provides Thanksgiving lunch for patients, staff, and families on Thanksgiving day , and they really put on an amazing feast. Staffed and served by an amazing group of volunteers, it was a great time for families to be together and enjoy a home-cooked Thanksgiving dinner away from home. We later learned that the family who has been doing this great service for the hospital for the past 15 years owns Superior Plumbing, and we have decided that we will not hesitate to use them in the future for our plumbing needs. I know that it meant a lot to all of the patients and their families who otherwise would have missed out on a real Thanksgiving dinner.

Looong night but finally off the ventilator

Yesterday ended up being a VERY long day for all of us, since Callie didn't fully wake up until almost midnight. They couldn't take her off the ventilator until she was breathing on her own and fully awake, and because of the amount of pain she was in when she would start to wake up, they kept having to sedate her each time, causing her to depend heavily on the machines. Finally they ended up having to let her pain meds wear off to some extent, just to get her awake enough to start breathing on her own. Can we just say that she was not a happy camper at that point?
Once she was finally fully awake the real fun began. She didn't understand why she had all of those tubes and wires all over and spent a pretty good amount of time trying to rid herself of a few of them. Once the breathing tubes were out she started slowly getting back to her bossy little self, demanding that the nurse bring her some water immediately. Of course she was told that she had to wait 4 hours after the tube came out and this did not please her in the least. She spent the next hour and a half begging for water, even telling me that she wanted to get in the car and go home because in mommy's car there is a water bottle. The poor nurse finally relented and gave her a bit of chipped ice, which seemed to satisfy her momentarily. Eventually she would go back to sleeping fitfully, only to awaken every 20 minutes thrashing around in pain. Finally the nurse suggested that I bend the rules a bit and get in bed with Callie, she even hinted that if I happened to close my eyes she wouldn't notice ( parents are not allowed to sleep at all in ICU and will get kicked out if they go to sleep) So I laid down next to her and sure enough, she calmed down and fell soundly asleep until about 2 AM, when she woke up and told me it was time for Mommy to get out of her bed. Those were the happiest words I had heard all night (since I had not yet been to sleep and was running on fumes by that time) and I didn't waste any time getting up and out, where I joined Jamie in the parent sleep room ( AKA parent sleep CLOSET) before she changed her mind. And finally everyone got some sleep ( a whole 3 hours, anyway) before we returned this morning to talk to the doctors during rounds.
When we returned for rounds, Callie was sleeping soundly and we were told that she did get some sleep, she finally got her water along with some Jello, and that she is on track to be moved to a regular room by the end of the day today. So HAPPY THANKSGIVING to everyone because we have SO much to be thankful for. So many people have sent out prayers for Callie and for us, and those prayers have been answered in a big way. Thank you all and keep 'em coming.

Cardiac ICU

Callie is still sleeping peacefully, although her eyelids flutter occasionally. They tried once to wean her off the ventilator but decided that she wasn't quite ready yet, so right now she is continuing to sleep. All of her vital signs look good and they are keeping her on plenty of pain meds to keep her comortable. She woke up very briefly and nodded at the nurse who asked her a question, then went right back to sleep.


Please say a prayer for Jamie, he appears to be coming down with a nasty cold or sinus infection and if he starts running a fever at any time they will kick him out of here and send him home for Callie's safety.

Surgery Went Well!

The surgeon came out and said that everything went perfectly and that Callie should make a complete recovery. He seems to think that she may get out as early as this weekend if all goes well. Thanks to everyone for thoughts and prayers, we really appreciate them and I know Callie does too. Hopefully we will get to see her within the next hour or so. Continue to pray for pain management, she does not handle pain well at all so we're hoping that we will be able to keep her relatively pain free until she is able to heal.

Surgery Update 10:15 AM

We just received word that the surgeon is done with the repair and everything went well. Callie is still on the heart-lung bypass machine but should be off within the next 30 minutes or so. In the meantime we were able to secure a parent room for tonight near the CICU, which was a relief because they will not allow us to spend the night in there and we don't live far enough away to meet the requirements for the Ronald McDonald House. Keep the prayers coming, so far all is well.

Callie arrived at the hospital in good spirits and she was all smiles for the nurses who took her vital signs in preparation for surgery. After a dose of goofy juice she managed to stay awake for all of 10 whole minutes before dozing off. Right before she fell asleep she got a bit silly, putting her surgical cap over her face and playing peekaboo. She drifted off shortly thereafter and now she's sleeping peacefully, waiting for them to wheel her into surgery. Here's hoping her mood is half as sunny when she wakes up, but I have a feeling that won't be the case.

4 months home and Callie's upcoming surgery

Wow, it's been awhile since I've posted to this blog but if all goes well we're planning to use it to post updates during Callie's upcoming surgery so that family and friends can keep up with what's going on. Callie has continued to adjust to family life in an awesome way. She thoroughly enjoyed a trip to the mountains and her very first Halloween, as well as decorating the tree for Christmas, which we did early this year due to her upcoming surgery. After her heart catheterization, it was determined that she would indeed require surgery for her Scimitar Syndrome, and that surgery was scheduled to take place today. However, we received a call yesterday from her surgeon telling us that her surgery is being postponed until Wednesday, the day before Thanksgiving. So, we wait. We haven't received the final confirmation yet but we are thinking that her surgery will take place sometime around 10:30 or so on Wednesday morning, and it should last around 3 hours. After that, she will be in the ICU for one or two nights, then she will be moved to a regular room. She will probably remain in the hospital for 4-5 days after her surgery. SInce I haven't done a very good job of updating over the past couple of months, I'm posting a few pictures of what's kept us so busy.