Christine's Journal
2009
January 19, 2009 – First journal entry of the new year. Things are returning back to normal. (whatever that is right!) The kids and Gary all got sick over the last few weeks. Nothing that required a trip to the hospital, which is great. There was and maybe still is something going around and it found it's way to us. Christine had her 3 month check up today. I was a little nervous how things were going to go today, as Christine needed an ECHO done. The nurse did what she needed to do. She gained almost 2 pounds in 3 months, but she lost some height, it was an inch. Well, the doctor said that is not possible and one of the nurses measured wrong. Her oxygen level was where it should be for her, and her blood pressure was good. Before the ECHO, Dr. Han came in to see us. She went over the chart and listened to her and just said she looks great. Still, can't hear anything with the leak. She increased her medication but other than that nothing new. Yeah!!!!! So, now it was time for the ECHO. We got in the room and laid her on the table and she was fine until he wanted to put “stickers” on her chest, for hook up of wires. She did awesome and we got out of there in no time. We got back to the room, got her dressed and then Dr. Han came in again. She said everything was clear and looked good. We can now leave. Of course, we will see her again in three months and then in July we will have a CATH done on her to prep her for her final surgery. Please, continue to pray for us and with us. Thanks for checking in on us.
April 27, 2009 . First, we would like to thank everyone who has been checking in on us. Then of course thank you for keeping us in your prayers. The power of prayer is a wonderful tool to have.
Now for the update. We had an appointment with the cardiologist on Friday (24). It went well. Christine had an x-ray done and we didn't even hear her this time. That is because she is big enough to sit up, instead of laying down. She is now 23 lbs and she gained back the inch that was lost 3 months ago, her O2's were in the 70's now, which is really low for her. The cardiologist said that is normal for her stats to be lower as she is growing. As long as she looks good, which she does, then everything is good for now. She had to have 4 blood pressures taken. On both arms and legs. Of course the readings were all different, but she didn't have to have them redone. (thank goodness) There is still that leak going on, but again it is still small where she can't hear it. Hopefully, with the next surgery they can fix that.
This appointment was a little longer than usual as we were getting some details as to when surgery may happen. Here's what we found out. It appears that surgery will happen late summer or early fall. They would like to do it before .cold and flu. season start up again. She could be in the hospital as little as 10 days or it could be months, it all depends on how much fluid she gets in her lungs, as with this surgery it's likely she will get some.
She has a CATH set up for May. As some of you may know that would mean surgery is coming. What they are doing is looking around and seeing what are going to be dealing with. Then they sit down and talk about it. This should be just a day thing, but you never know.
May 14, 2009 – Today, we had an appointment with the cardiologist who will be doing Christine's heart cath. This is her pre-op appointment. She is up to 24 lbs. Everything else is good. Her oxygen level was in the 70's again, but no concerns yet. She did really good. He even said that her heart sounded good.
Once the heart cath has been done, he will be bringing Christine up in the meeting with the other cardiologists. We should find out a couple of weeks after her cath, what they have decided to do. The ONLY thing he is worried about is her weight. She is not where they would like, but you never know they still may decide to go ahead with the surgery anyway. We will know more of course once her cath is done.
Please, continue to pray along with us. Also, please feel free to email me a “praying for you”, or “thinking of you”. I plan on putting them all together for Christine, so she can go back and see how many people are out there praying for her. More later.
May 21, 2009: Christine went into a scheduled surgery, today, to prepare for the big sugery within the next year. A cath was inserted in her to have a look at her heart to see how she is progressing.
After a couple of hours between the process of being anesthetized and the procedure, Christine came out groggy and irratable, comforted only in that she arrived in the Short Stay Unit just in time to watch Wow Wow Wubbzy. She is scheduled to be released at 8:30, tonight, so she can sleep in her own bed.
May 25, 2009 – Sorry, this is a late update it was a tough a weekend. On Saturday, we decided it was time to put our dog of 16 years to sleep. She was a good dog and as you can see we had her for a long time. The kids took it hard but they too knew it was time. Thank you, Thank you for all of your prayers. Everything on Thursday went well.
We got there on time, and got down to the room with the nurse who went over things. If you can believe this but one of Christine's favorite nurses from the NICU now works downstairs. Once the nurses were done with what they needed to do, the doctor came in. He went over things had us sign consent and then listened to her. Then the anesthesiologist came in and talked about what they were going to do. Then it was time.
I felt I should go in with her as they put her to sleep. I thought it was going to be okay, I could do this. After seeing that, it was not easy at all. It was one of the hardest things to watch. I then went back to the room and saw Gary and just cried. Then we went to the waiting room, to of course WAIT.
The nurse called a couple of times to let us know how things were going. At 4 pm the cardiologist came out and we went to go over what he found. He said things went well, her stats were awesome BUT the leak I have been talking about is not slight it is more than that. He isn't concerned about it as she has been handling it this long so he just upped her blood pressure medicine to modify the leak. He wants her to come back in two months. Also, on Thursday (28th) he will be bringing her up at the big meeting. After that meeting we should know more. He also mentioned that she will be released at 8:30 pm. (yeah!)
Finally, at 4:30 pm they call and say she is ready to move to the short stay unit. It was such a relief to see her, she looked great. Every hour a nurse came in and took her temperature, blood pressure and get her oxygen level. Everything looked good. They have this new device that they use for the cath that stays on her groin (like a big band aid) and they have to deflate it to make sure she isn't bleeding and then they reflate it. They put air back in it and have to make sure they don't put to much. Once we leave they will take the air out and cut off the end and then in 24 hours the whole bandage will come off. (guess who will be doing that)
A little before 8:30 pm the nurse came in and went over things with us. Then we were free to go home.
July 17, 2009 . Happy 3rd Birthday to our little sweetheart. It is hard to believe that's it's been three years already. Where has the time gone. We didn't do much on her birthday as we were going to have a party the next day.
So Saturday we had a family party at the house. We had a house full of people which was nice. We only did one cake but we celebrated not only Christine's but also Joey and Joshua's as their birthdays are in August and we don't know where we will be. It turned out to be a beautiful day.
They got some very nice gifts. Christine got some yo gabba gabba stuff along with wow wow wubbzy. She had so much fun opening gifts it was great to see. Joey got more than usual as his golden birthday is this year. Joshua cashed in on some more cars (from the movie cars). All in all it was a pretty big mess around here.
It won't be long and we will be back at the hospital. Please, continue to pray with us that everything turns out okay. We know that there will be good days and bad days, we just hope the good days out number the bad days. I plan on staying at the hospital as much as I can. Gary took some vacation time to stay home with the rest of the kids. It should be interesting to see how that goes. Help us in getting through the month of August. Thanks again for everything.
June 12, 2009 . Today I got a call from the lady who sets up surgery dates for the cardiologists. We now have a date of August 7. Christine will be the first one, so we will have to be there early.
Now more than ever we need the prayers coming. Even though this surgery has a very high survival rate, something could still go wrong. She could be in the hospital for 10 days or even longer depending on how much fluid gets in her lungs.
Her third surgery in the series of three is called the Fontan. In the final surgery the surgeon will redirect the blood flow. Taking the blood through the IVC (inferior vena cava) directly to the pulmonary arteries with the SVC (superior vena cava) blood. All the blood then goes to the lungs for oxygenation before going to the heart for pumping to the body.
The surgeon who will be doing the surgery said that her weight is not a factor. She is doing her own curve and it won't matter if it gets done this summer or next year. We are glad they want to do the surgery this summer as Christine seems to be huffing and puffing more than usual. She seems to be blue a lot more than usual and she feels sweaty. This all has to do with her growing and the her maybe needing the surgery sooner rather than later. Through all of this she is still a happy almost 3 year old.
August 14, 2009 - We got the okay to go home today. That was so exciting. Her chest xray remains the same with the left side still holding some fluid, however it has not gotten worse. This is nothing out of the ordainary, they are hoping it will just move its way out, if that doesn't happen or if it gets worse they will have to go back and fix it. We hope and pray that doesn't have to happen. They told us to watch her closely, making sure she doesn't get a fever (hense infection), she doesn't get blue when she isn't crying (hense the lungs), watch for bruising, bleeding, etc. She is on four different medications, only one she really doesn't like and of course she needs it twice a day.
Christine was so excited to be home. The rest of the kids so excited to see her also. It is so great to have the whole family together again. It has been great to have the families of Joey's class bring us dinners. That has been so helpful and thoughtful of them. It is so amazing how people are there for you when you really need them.
We go in on Tuesday to get blood drawn (not looking forward to that), chest xray and just a regular check up. Hopefully everything looks good.
Thank you for all the prayers, cards, gifts, meals. Please, continue to keep us in your prayers as we come up to the appointment and there after. Our prayers have been answered so far. It sure is a wonderful tool to have.
August 18, 2009 - We are still at home. We did have an appointment with Dr. Han this morning. Before the appointment we had to go and get her blood drawn. We got to the hospital around 8:15 am and got in by 8:30 am, thank goodness that gives us a half an hour to get the draw. Well, luckily the lady was able to find one right away and her blood didn't stop it kept going. That was the one thing I was not looking forward to. It is one thing to get poked but when it stops and they have to poke again, it just isn't right.
So, we walked over to the clinic. It was a beautiful morning (not raining, yet). She weighed in at 23 lbs 5.6 oz, and 34 1/4" long. Her oxygen level was 99%. Everything looked great. Well, almost everything, she had her chest xray and well it still shows the fluid. It is still the same amount, she just can't clear it yet. Dr. Han prescribed another prescription to see if that helps at all and we will be back to the clinic on Friday. Luckly, it's only the chest xray no blood drawn.
Christine's INR level is still not where they want it, so that means instead of 1 and 1/2 tablets daily of coumadin, some of the days she will need 2 tablets. Otherwise, she really didn't change anything.
All we hear from the doctors and nurses is that she looks great. Really, she looks sooooo much better than before. She is just one of those miracle babies. We know how lucky we have been. There are some kids who have a harder time and maybe our time is yet to come but for now we are taking one day at a time.
As we were walking out we ran into the surgeon and he always has said to her "Well, hello beautiful." He said she looks great and then Christine smiled at him. I think she knew he wasn't going to change her bandage anymore. The Lord has really blessed him with a wonderful talent.
Will update on Friday, with results of the xray. Please, pray that it will look better. That is one tool that doesn't get old. Thanks for checking in on us.
September 1, 2009 - Today was another scheduled blood draw and xray. The blood draw is so hard to do. She just screams as soon as she sees the blue thing they wrap around your arm. Then when they can't find a vein cause it moves, it just delays the process. There is NOTHING you can do to settle her down until she realizes that it is almost done, then will she stop crying.
After that ordeal we head over to the clinic for the next process. We get in and she has gained some weight (good and bad), height grown a little, oxygen level is in the 90's, and blood pressure looks good. The xray she does not mind (or as she calls it her picture). She walks right into the room and in no time she is back by us. Dr. Han then came in and said the fluid has gone down some more BUT there is still some. Everything else looks good and she sounds good. Dr. Han said we have had four xrays since being released and they are looking good so we don't have to see her for two weeks now, unless something comes up before.
Thanks for all you have done for us. Thank you for checking in on us, it really means a lot. Till next time.
August 21 - Today was our appointment for Christine's chest xray. We got there at 11:15, just as scheduled. When we got to the room, it was time to get her weighed, so off with the clothes. Her weight is 22 bls. and 11.8 oz. - great, she has lost weight. I am thinking this is not good. The nurse steps in and says that this could be good, as it may be a sign the she got rid of some of the fluid in her lungs.
We got into a room and took her blood pressure, which was in the range- no oxygen level check, today. Christine actually walked to the xray room, as the room we were in is right across from there. Now, it was time to wait for Dr. Han to come and tell us the news.
Dr. Han grabbed the xrays from Tuesday, then todays, and showed us the difference. She did lose some fluid, but there's still a bit there. So, we will stay with the medications we have now and see her again on Tuesday for another xray and blood draw.
Please, continue to pray with us that her xray will finally look clear, and that the blood will flow when they have to draw it. Thanks for checking in on us.
November 5, 2009 - Sorry, for the lack of updates. It has been a long month of October here. If it wasn't one child sick (with fever) it was another and then trying to make up homework. So far Christine and mommy are the only ones who DIDN'T get the fever.
There just isn't a whole lot going on with Christine. Praise the Lord!!! He is definately watching over her. We had two appointments today. One was the neurologist and the other was the cardiologist.
The neurologist said she looks great and there is really no need to come see him again unless she gets a seizure. Since she didn't have one after her last surgery, he feels she will be fine. Yeah! one less doctor to see.
We got to the cardiologist early to see if Christine needed her blood drawn. Well, of course she did but the good news was her doctor would be able to see her now before the blood draw. She is still 24 lbs. She had an xray that came back perfect. The doctor was impressed with her yet again. She only had surgery 3 months ago and she is doing amazing. She has been doing so well that the doctor reduced one medication and stopped one completely. We don't have to see her until January unless something comes up.
Now it's time for the blood work. I sure hate this time and can't wait until I can just finger poke her. We got in and we got a man. Okay, this is our second one and she just doesn't do well with them at all. It took longer than a couple of weeks ago, but not as long as the one before that (with the other man). I will be requesting a female from now on. Christine knows that after the blood work she gets some stickers and a pencil. Well, she got her ONE sticker and no pencil. He told her they were running low on them, she started to cry. Are you kidding me? I guess I should just bring a pencil from home and have her pick that one out everytime. We finally leave trying to calm her down.
I get a phone call about 3 hours later from the nurse. Christine's INR is high. Great what does that mean? She said that we should stop the coumandin for 3 days and start back after that with just 1 1/2 tablets instead of 2. Here comes the kicker, come back in a week and get her INR checked again. Really not what I wanted to hear.
Joshua goes in on Monday to see the urologist. It has been over three years since his surgery and two years exactly from seeing him. Hopefully everything still looks good.
Thanks again for checking in on us.
December 16, 2009 . It appears to me that it has been a while since my last journal, so I thought it was time to update. As the saying goes "no news is good news" and in this case it is. We are all finally healthy again. Christine is doing amazing. We have gone to the hospital the last three Mondays for blood draws. Her first one was high so they adjusted her coumandin level and they wanted to make sure it was okay after that. As of right now we won't have to get blood drawn for a month. That is so awesome. She is growing and running and talking and fighting with her siblings. It is great to see. Well, okay not all the time with the fighting, cause she usually gets her way. We hope everyone has a wonderful Christmas. This is such a special time of the year as we celebrate the birth of our Savior. Thanks for checking in on us.
