| Friday, July 7
Prayer Warriors: This is the email for which all of us have been waiting. Amanda called me at 4:35 a.m. this morning to let me know they were on their way to the hospital. THEY GOT THE CALL! Amanda sounded very anxious, strong, and encouraged. I imagine Caitlin is in the procedure now getting her new heart. Please take a moment of silence and ask that God be with Caitlin and her family at this time. Ask that God grant the family the strength and courage to accept whatever his will may be. Amanda did say that she would give me an update as soon as she can. I sincerely ask for your prayers. Also, please remember that an account has been opened at Guaranty Bank in Eunice and will remain open to accept your generous donations. You can drop by the bank or you can mail donations payable to Caitlin Elise Fruge: Guaranty Bank
God bless you all! Please forward to anyone who may be able to help. Prayer is powerful! --Amanda Darbonne |
| Saturday, July 8
MESSAGE 1: Dear Prayer Warriors. Yesterday morning at 4:37am we got "the call." "We have a heart for Caitlin." We spent all day in the hospital running final test and waiting for the new heart to arrive. She went into surgery around 5pm and was all done by 9pm. The doctors indicate that her new heart is performing well and that she should continue a gradual recovery from the surgery. She has been sedated since the surgery and will probably stay that way for a couple of days. She looks great and has a pretty pink color to her skin that we have not seen in years as best we can remember. Please keep Caitlin in your thoughts and prayers. She still has a ways to go before she is "out of the woods." - Cory & Amanda Fruge Caitlin Fruge MESSAGE 2: Caitlin's surgery went pretty well. She is recovering hour by hour from the transplant surgery. Her color looks great. She is pink like a brand new baby. She tried to sit up in bed at least 5 times so far. She opens her eyes and stares at me and Amanda, then reaches up a little and tries to sit up. SHE LOOKS GREAT!!!! Dr. Pearl, is very confident that she will continue a slow but steady recovery/adaptation to her new heart. She is getting tremendous attention from the staff here. We are so excited...she looks so good. I cannot express what it is like to see the difference in her color. They told us to expect the pink color of her skin (from adequate blood flow finally) but it still did not prepare us for how different she looks with a good heart. If she "looks" that good --- I can only imagine how much better she is going "feel." She has been sleeping peacefully, except for the few times she tried to sit-up, she is probably dreaming about eating crawfish or Chinese food. Thank God and thank you all for your support and prayer. God Bless, Cory Fruge |
| Monday, July 10
***Times below are from central time in Louisiana 8:30 a.m. Cory says they are removing the tube from Caitlin's nose right now and she is looking great. 9:20 a.m. The tubes are out of her throat and she is doing great. 10:13 a.m. This morning the Doctors decided that Caitlin was improving just fine and that it was time to start pulling some tubes out. Her vent and feeding tubes were pulled and she was able to start talking. She commanded us to get her two corn dogs and some ice water. She then fell asleep. I thought I would have a chance to take a picture of her without her noticing. Right after snapping a photo she opened her eyes and busted me taking her picture. She was not happy to see my camera pointed at her I must add. I think I am in the dog-house for the moment. With all the pictures I take of her, you probably would never know that she hates cameras. I have to sneak or bargain for most all of them. Today is a big day. She will have more tubes pulled from her abdomen and we are told that she will start feeling better and better as a result of being more comfortable. Not surprisingly, she awoke from her anesthesia a bit confused. We explained to her that Dr. Pearl put her a brand new heart in her belly and now she will be able to run fast like her sister Corinne. She gave us a nod of approval. I may have even detected a little grin on her face. The professor of cardiology here at Children's came in to supervise the procedures this morning. He made several comments that he was surprised that he could feel her pulse in her big toe. He said that was unusual too have such good cardiac output and that was a very positive indication that her new heart is working very well. We prayed for a perfect heart didn't we? God hears our prayers! Mark 11:24 Glory to God! That's all for now. -Cory |
| Tuesday, July 11
Just a quick update on Caitlin's rapid progress. Today is day 4 of Caitlin and her new heart. She has had all of her chest tubes and I.V.'s removed. Yes! Already!
This is a bit ahead of "normal" I am told. But, the doctors see no reason to have them there because she is doing so well.
She has been without pain medicine since yesterday (I wish I could say the same
Caitlin is on a healthy dose of steroids which is standard initial procedure after a heart transplant. It is anticipated
and expected that we see more than a bit of swelling, especially in her cheeks. I can already begin to see her cheeks getting
fuller since the last pictures that I have taken. Boy, she is really gonna have some cheeks to squeeze now. We should also
expect her being aggravated at us when we do squeeze those chubby cheeks too Caitlin Fruge |
| Wednesday, July 12
7:17 a.m. I just received a phone call from the hospital. July 12, 2006 6:30a.m. Central Time Please continue to pray for Caitlin. As Cory has said there will be good days and bad days. Today Caitlin is having a bad day. She is not responding to one of the drugs that she has been giving. They will have to switch medications and adjust dosages accordingly. Please pray that this is successful with no side effects. Love and prayers, Shannon Simar - Cory's sister 11:31 a.m. We had a bad day...I stayed the night with Caitlin. She was progressing very well...walked to bathroom crawling around her bed, etc. We watched "Dirty Jobs" on T.V. and laughed together at the host, Mike Rowe, nearly get eaten by alligators. I couldn't wait to exit ICU with her this morning. However, this morning..at 5;45am..I awoke to alarms going off and the room filling with doctors and nurses. Her oxygen level was dropping and Caitlin was unresponsive. ..like a coma patient was my impression.....she was given some medications and rushed downstairs to get a CAT scan....STROKE and Clot to brain were immediately ruled out. Spinal Tap done to check for infection or swelling or infections in brain or central nervous system. Results not back yet. It has now been about 6 hours since onset. Her speech is coming back...although not 100%. It is slurred and sometimes not pertinent to the questions asked of her. She is on a healthy dose of medication to raise the threshold for onset of seizures. The prevailing theory at this point is that this may have been an induced (drug) seizure from a combination of large doses of medication and/or unusually high blood pressure. Keep praying that Caitlin makes a full recovery and that she have no brain damage, motor function or speech problems..... please pray that she recover from this event 100%. I am sorry for the bad news. I know so many of you are as excited as we are.....We just need to keep the faith. God moves mountains for people of faith. --Cory 10:40 p.m. This morning, at about 5:45am Caitlin became unresponsive during a routine exam while in the ICU. It is believed that Caitlin experienced some type of drug induced seizure or something they called a "mini stroke". It was described to me as a blood clot that travels into the brain and dissolves so quickly that it doesn't leave a trace. About the only way to tell if this happened is to perform and MRI, which will be done tomorrow. Caitlin remained unresponsive until about 9 am. She slowly started to regain conscious and improved throughout the day. She had a very busy day, in spite of her ordeal, and was given all sorts of test to find out what caused her to lose consciousness. Her heart was working great! Incase you were wondering. She has a great heart! Caitlin improved little by little throughout the day. The most popular theory amongst the doctors is that Caitlin probably experienced a drug induced seizure from some of the large doses of medicines involved with a procedure such as her heart transplant. It is hoped that within 2-3 days she will return to normal. I was looking so forward to emailing pics of Caitlin walking out of ICU today. I guess that will have to wait a little while longer. After all the dust settled today and I was able to think about what happened, I realized how lucky we were this happened in the ICU and not after discharge. The immediate care she received, I trust, has probably prevented any permanent neurological damage. I anticipate her to make a full recovery in the not too distant future. Why am I so confident? Caitlin is very strong and has the greatest support network. Matthew 18:20 For where two or three are gathered together in my name, there am I in the midst of them. I don't think little Caitlin will ever know how many angels she has praying for her recovery. Amanda and I thank you for
the prayer and support. I look forward to sending you pictures of Caitlin walking down the hall in the near future. Thank you
and God bless! |
| Thursday, July 13
11:26pm. Just got home from the hospital. Amanda is staying with K-2 tonight. I scored a neat picture tonight just before I left. By the way, K-2 is Caitlin's nickname. When Caitlin was born, June 21st, 2002....Corinne, her sister, was just learning to talk. Nearly, every word she knew, which was not many, ended in the sound "too". We tried to teach her how to pronounce Caitlin's name, but she could not say "Caitlin" to save her life. She called her "Kate-Too" and was convinced that she was saying it just like you! Well, we finally gave up and just got used to hearing K-2 all day long from Corinne. Soon Brittany started saying it, then mom, then dad. Yup! The name stuck. In our family, she is referred to as "K-2" by aunts, uncles, friends, cousins and grandparents. Her mail, gifts, and even a piece of monogrammed luggage has K-2 rather than Caitlin. (I hope that will eliminate some confusion) Today was another long day for Caitlin. Something neurological is going on that is preventing her from sleeping. It is hoped that this is may be a reaction to a certain medication, (so it can be changed). She is on about 9 different medicines related to the heart transplant. And now 2 more to prevent her from seizing again. She has not been able to sleep for about 72 hours. The cardiologist and neurologist are working long hours to try and figure out what is causing this. I am not going to go into all the possibilities because I would be up for hours. Another CT scan (brain scan) was done tonight to make sure there was no clotting, bleeding, or swelling. The preliminary results show no abnormalities. An MRI was not performed today but will be done mid morning tomorrow. Praying for no abnormalities on the MRI. Caitlin has patience on loan from God. I wish she would share with me. I don't know how she tolerates all of this on "0" sleep for 3 days now. I am gathering that the next 2-3 days are going to be critical to her recovery from the seizure are whatever happened on the 11th. It was hoped that Caitlin would continue to get better as time went on. That hasn't exactly happened. One thing we do know is that Caitlin is unusually sensitive to medicines. Which is probably a contributing factor to what happened on the 11th. Certain, if not most, of the doses medicine given to her, to the surprise of the doctors and nurses, have had exaggerated effects and results. Requiring much smaller doses than normal. This is making the doctors job even more difficult and is suspected in the cause of the initial "seizure". We tend to agree with this theory. Her behavior has not returned to normal. Yesterday she had gotten almost back to herself, but, today she drifted away as the afternoon wore on. I hope to return with better news soon. What to pray for? Pray that Caitlin has no damage to her brain. That she return to herself 100%. Thank you! --Cory |
| Friday, July 14
11:43 a.m. Brief update. Caitlin is doing much better today. I can see the prayers lifting her wings. She was able to sleep 4 hours last night. It is a start. She is talking a little bit more and more. She even said all of her ABC's with me. Her behavior seems to returning towards normal rather than drifting the other direction. As days pass, some of the medicines she is taking will start to disappear permanently. This should only help her to improve more and more. Will talk more later when I have more info to share. -Cory 9:19 p.m. Caitlin finally got to the MRI today. After being delayed numerous times. We don't expect any results until tomorrow. She has finally started sleeping. Today, Amanda and I were watching her sleep. We noticed that she was snoring. Snoring big time! I started thinking...when was the last time we heard her snore? She has not slept that relaxed in over 4 months. Her heart and cardiac output was so weak, she was constantly out of breath, even when sleeping. It was awesome to witness something so common to most people. One of our 1st outward signs of how her new heart will make her stronger and more comfortable. Caitlin has made significant improvement Friday. Thank God! Wish I had more info. At this time we are just kinda waiting to see if she continues to improve day after day. God Bless --Cory |
| Saturday, July 15
Just a quick note to update all you prayer warriors who have been on high alert. Never underestimate the power of prayer! MRI results just returned. Caitlin should have no permanent brain damage. The physical changes that were seen on the MRI should go back to normal. Although, the MRI did confirm that something did happen. I believe, we will probably never know exactly what it was. The two leading theories are: either a mini-clot that has now vanished or a high level of one of her anti-rejection medicines. Caitlin has finally started resting. She slept for 8 hours last night and then awoke with an appetite. Ate some breakfast and is going back to sleep for another power nap. I guess she has some catching up to do. Before going down for her nap, she was she was chatting and showing off her radiant smile. A smile that we have not seen in many weeks because of her poor heart. Thank you Lord! Thank you for hearing the prayers of your faithful. I will talk to you all later. Please spread the "good news". If all continues to go well. Maybe we can get out of here by Monday. --Cory |
| Sunday, July 16
Caitlin had a very good day. She has an appetite for the first time in months. I think her caloric intake today probably equaled 3 days put together before her new heart. I am certain that we will see her improve to her old self at a much quicker pace now. She watched T.V. today and napped. Nothing new to report except that she is continuing to improve. Will update again soon...Cory |
| Tuesday, July 18
Caitlin had a pretty good day today. Her appetite is improving and she is almost back to normal after our scare on the 11th. Tomorrow morning Caitlin will have a heart biopsy. This is a pretty big event. This is the 1st time that the doctors will remove little bits of heart tissue from inside of her heart and get a look at how well her immune system is treating the new heart. We are praying for no rejection to be present when the results come back. If all goes well we should be checking out of ICU this week. As always, Thanks for all the prayer and support. --Cory
|
| Wednesday, July 19
11:38 a.m. Her biopsy today has indicated that she may need a stint to open a collapsed vein in her interior vena cava. Other than that...no news yet on rejection....late tonight maybe on those results. Love ya, Cory 9:41 p.m. Caitlin's Prayer Warriors, today we received the results back from Caitlin's biopsy of her new heart. Tissue
samples revealed that there is "moderate" rejection of her heart. To explain it another way, there are 4 levels of measuring
rejection: 1(none) 2(mild) 3(moderate) 4(severe). Yes! This is serious! But not impossible to beat. It is believed that because
of the complications back on July 11th, Caitlin's immune-suppression medicines were rendered ineffective temporarily. Thus,
allowing her immune system to see and attack foreign tissue, in this case, her new heart. We knew that this was a possibility,
maybe even likely. But doctors feared that they had to take this route to protect her brain and deal with rejection, if any,
later. It is not uncommon for this to happen in a transplant with "no complications", much less one with "complications." |
| Friday, July 21
To Caitlin's Prayer Warriors: Today Caitlin was discharged from ICU. Fourteen days after her heart transplant. She has a new room now on the general floor for cardiac patients. She has been on a ultra-high dose of steroids for the past 48 hours to stop the rejection of her new heart. She still has another 24 hours to go on the steroids. Meanwhile, the transplant specialist are still trying to get her rejection medicine levels up to the amount they need. Her latest blood tests indicate that she is a little less than halfway there. It is a slow process to get them up because they are afraid to give her high doses of anything, due to the sensitivity she had back on the 11th of July.
If all goes well this weekend and her Prograf (anti-rejection medicine) levels increase sufficiently, we could be coming home early next week. Caitlin has just started asking me "daddy, I want to go home". Today, she said "Mom, I'm done." she repeated it several times. Amanda and I looked at each other dumfounded and said "done with what Caitlin?" She said: "I'M DONE WITH THE HOSPITAL!!!" I had to bite my lip to keep from bursting out laughing. Where did that come from? I guess it is coming from deep within. She is "done" and wants us to know it. Time to go home! They won't have to tell her twice. She will be half way to the car before I get her bags picked up. Well, what next! We are still praying that this dose of steroid therapy will stop the rejection. Next on the horizon is that we have to wait 12 days to perform another heart biopsy to see success rate of the treatment. I thought it was going to be this Wednesday, but, it has been moved out to July 31st. Apparently it takes time for this stuff to reveal its effectiveness on a biopsy. Earlier today, Caitlin was cut loose and allowed to walk around the ICU floor. The only catch was that she had to wear her mask. The mask was a little bit much at first, but, she quickly adapted to it. Or to put it another way, :NO MASK - NO WALK DOWN THE HALL." She smartly chose to put the mask on and escape from her room. I hope to email everyone soon that her Progaf level has reached the correct level and that "WE ARE DONE WITH THE HOSPITAL". Thanks, and God Bless! --Cory |
| Monday, July 24
To Caitlin's Prayer Warriors: Hey all! We are having a great day today. Thank the good Lord!!!!! Thank you Lord for hearing all of our prayers. We have had some tough times, but, I believe that they are behind us. We still have a few more tests to get the results from: ECG, EKG and Biopsy on the 31st of July. We are going home tomorrow (Tuesday)!
Today was the first time that Caitlin has been able to feed herself since well before her operation. As you can see, the steroids have caused her to puff up some cheeks. These fat cheeks will fade away over time. I will be sending more info once we get home. On behalf of Caitlin, I thank you all for sticking with her through all of this and for the support that you have shown for our family and for Caitlin. --Cory |
). She even got out of bed for a little while today.
It is awesome to hear the doctors talk amongst themselves. Twice a day, Pediatric Cardiologist come by and stop by each
patients room and discuss the patient's history and treatment. This usually consist of about 9 cardiologist. Yesterday they
described Caitlin's heart transplant as a textbook example of how a transplant should go. The professor of cardiology commented
"if I didn't know any better, I would think Caitlin must have read the book on "How to do a Heart Transplant." Because she
responded the way that she was supposed to during all aspects of the procedure. He finished off by saying to the other
students and doctors that this was the 47th heart transplant performed here at Children's Hospital and there was no finer
example of how a heart transplant should go. I was so proud to hear them talking about our little angel. If all goes well
tonight, Caitlin will be discharged from ICU tomorrow, on day 5. Wow! If I ever have open heart surgery, much less a complete
upgrade, I hope that I am cruisin' down the hall in 5 days. Her lunch today consisted of Gold Star Chili and Oreo cookies dipped in milk. Oh yes! She insisted on feeding herself I
should add!
I managed to sneak these pictures while Caitlin was napping.
.
Today Caitlin had a host of echos and x-rays to check her new heart inside and out. The results were great! Her new heart
is beating very healthy and strong!!! Thank God! Thanks again for all the emails, prayer, and support.
Keeping the Faith,
Cory Fruge
