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Keegan

July 11, 2004

Keegan is doing quite well. GOD has given me a miracle. Every day he amazes me more and more. He is so "normal"...lol. He is VERY active and keeps me on my toes. He is talking very well now using 4 and 5 word sentences, and is doing very well with potty training. He also counts to 10 now, excluding #7, I don't know why he won't say seven but he pauses for you to say it. Go figure. :)

Deanna

May 26, 2004

Keegans appointment went well. The doctor said everything looked great and now Keegan will only be going 3 times a year for follow up care. We are still waiting for the results of the holter monitor but the doctor thinks it too will be good.

Thanks for all your prayers.

Deanna

May 23, 2004

Tonight when I checked Keegan's heartrate I caught the skipping again. It has been a good 6 months since he has had it. I am so frustrated....I thought he had finally "outgrown" it. All Children's is supposed to call me tomorrow to see if they will still do the stress echo or not.
We need your prayers. They do not seem overly concerned with it but it makes me a nervous wreck....I mean your heart shouldn't just stop for a break! You know?
Deanna

May 20, 2004

Keegan's appt went good today. His EKG, x-ray's and bloodwork were all good. Keegan was not happy with any of the appt today. Every time any of them even came near him he started screaming....I hate that. I can't wait until he is big enough to know there is a reason behind all of it.
We felt so bad he wound up coming home with new toys, but he deserved them!
He also went and picked out a cake for his second 2nd birthday. Today makes two years Keegan has had his new heart so Sunday we are going to have a heart birthday party for him. Nothing big, just our immediate family, but I know Keegan will be thrilled. He picked out a Shrek cake. It is pretty cute, and of course I will take lots of pictures....lol.
I also found out today that he will just be having the dobutamine stress echo on Monday and not the cath and biopsy. So he will have an IV and they will put him to sleep to do it, but nothing invasive on Monday. So that is happy news. I will be sure to update everyone after his appt Monday and let you know how that goes.
Keep us in your prayers! :)

22nd April 2004
I just received a phone call from All Children's Hospital. They have scheduled Keegan's Dobutamine Stress Echo for May the 24th. He will have his pre-op the Wednesday before, the 19th. Keep him in your prayers. I know you other heart moms know there is no such thing as a simple procedure....not on our babies anyway, so needless to say I am a nervous wreck already and that is a month from now! I will let everyone know the exact details when I receive them.

21st February 2004

Keegan had his firs checkup in 3 months this past Wednesday. Everything looks awesome. His height and weight are both great and heart wise everything is great. We will have another visit in May.

3rd February 2004

Thought it was about time for an update. Since December we have not had any illness at all. Keegan has been doing awesome. He is growing so fast. He will have a checkup with Cardiology on Feb 18th, and I will be sure to let you know everything when we get home.
Keegan will be attending All Children's Hospital's "happy heart party" on Feb 13th. Last year they had a great turnout and I think Keegan will really be able to enjoy it this year since he will surely be running around like a little maniac! LOL :) I will be taking pics so as soon as I get those scanned I will pass them on.
Talk soon.

Your friend,

Deanna

10th December 2003

Keegan has Bronchitis. He seems to be fighting it pretty well for now, it is not requiring hospitalization at this point. Just keep Keegan in your prayers that he can get well and have a happy holiday season this year. Last Christmas he was so ill, and I do not want to see him suffer like that this holiday. I will keep you posted.

Your friend,

Deanna

20th November 2003

Keegan's checkup today with the cardiologist went great....for the most part. They had to use a very large needle for his bloodwork today due to the testing for the blood clotting disorder, after two tries and lots of screaming and crying (on both our parts!) they got all the blood work they needed. 6 Tubes!!!! I was surprised he could walk it just seems like so much. Well, anyways...the blood disorder test came back NEGATIVE!!!!!!! HOORAY!!!!! This is great news for us, and means that his nose bleeds are just being caused by severe allergies, we are still awaiting the results, but they tested him for 10-15 different environmental allergens (cat, dog, grass, dust, etc.)

The cardiology side of the visit was great too. He actually sat right up on the table saying "good boy mama" and had a snack while they did his echo, and the doc says everything looks really great. We do not have another scheduled visit now until February. His weight today was 26 pounds (50th percentile) and his height was 32 1/2 inches. This is also great news since they are happy if they can even plot these special heart babies on a growth chart, and Keegan is "normal".

Keegan also got himself a little girlfriend today, her name is Jessica and she is 3. She also had a heart transplant as a baby. They held hands and walked up and down the hallway waiting for the docs and then hugged bye bye. How cute is that? Well, sorry this is so long I am just both very relieved and happy. Thank you all for your continued prayers and support.

Deanna

14th November 2003

Keegan went to the pediatrician on Thursday due to some odd sounding coughing he started on Wednesday around Midnight. Well the doc says it is Croup and a right ear infection. They started him on an antibiotic and some more Zyrtec. He seems to be fine. He is still eating and drinking well, so send prayers our way that he can get over this one without a hospitalization.

Your friend,

Deanna

21st October 2003

Keegan had his appt Monday with the Ear, Nose and Throat specialist for his nosebleeds. The doctor thinks it is one of two things. Keegan either has severe allergies, or he has developed a medicine related blood disorder. According to the ENT doc some of the meds that Keegan is on can lead to problems with the way his blood clots. We, of course, are praying it is allergies.

Keegan goes back to see cardiology on November 19th and will have some extra bloodwork drawn then to see which of the two problems he is actually having. I will be sure to keep everyone updated.

Deanna

11th October 2003
Keegan has another bug! :( He is running a low grade temp and has an irritated throat and red ears. The pediatrician put him on Zyrtec for 5 days and just wants us to keep an eye out and continue with tylenol.
Of course All Childrens has already been notified and if there are any major changes I will call and let them know over the weekend.

On a happier note Keegan visited the Florida Aquarium last week and he had a great time. It worked out well, we went on a Monday and there was hardly anyone there at all. He was so well behaved and just totally amazed by everything he saw. His favorite exhibit was the ducks, we had to visit them 3 times before we left.

I will keep everyone updated. Please continue to keep Keegan in your prayers. I think he is due a break from being sick and going to doctors appointments.

24th September 2003

Keegan saw the cardiologist today who says everything looks awesome. The viral infection did not affect his heart. HOORAY!!!!!! Keegan is such a ham too. Those doctors have him soooo spoiled. He just goes right into their offices with them, climbs up in their laps, and they let him sit up on their desks while they work. He shared his cereal and hot dogs with his cardiologist today...lol. They are so good with him.

They still believe a dose change will be necessary to control his arrhythmia, but that is due to his recent weight gain. They will be calling later with that info, but we do not have another (scheduled) visit until November 19th.

He will see ENT on October 10th for his nosebleeds which are currently treated with nasal spray and Vaseline.

Well, I have rambled on long enough I just wanted to thank you all for your support and prayers once again.

Deanna Dempsey

19th September 2003

Keegan is home. We got home at midnight last night. So far they still think it was just something viral. We will f/u with cardiology in 2-3 weeks just to make sure his immune system did not kick into overdrive and attack his heart. I will be sure to keep everyone updated.

Deanna

19th September 2003

Keegan is in the hospital. Tuesday night his heart rate shot up to 152 at home which may not sound too bad to some of you, but his normal is 98-100 BPM. I called the transplant doc who wanted him in the emergency room. By the time we got him there (it is a 1 hour drive) his temp was up to 105.1. I of course was panicking by this point. I mean geez.....105.1!!!!!!!!!!
They now have him on antibiotics just to be on the safe side, and tomorrow we should get bloodwork back to confirm that Keegan just has a bad cold. I just still find it so strange how a simple cold can get so bad with my special heart baby. Keegan seems to be fine though. He played all day today and the cardiologist feels he can go home tomorrow or Friday. I will be taking my shift at the hospital starting in the morning so I will update again when Keegan is back home. The weird thing is he was not sick at all before this other than a little bit of a runny nose right before bedtime on Tuesday.

Well, send prayers our way that it is just a cold as they suspect and that this has not affected his heart. (which they do not suspect since I caught it so quickly)

Deanna

18th September 2003

Hey we just got home a little while ago. Keegan's echo, bloodwork, and ekg all came back normal. The doctor really feels strongly it is just time for a dose adjustment but Keegan has on a holter monitor right now. He will wear it for 24 hours so they can have a continual reading of his heart rate for the entire 24 hour period. The results of this is now what will determine if the medication will increase or not. They were all very impressed with how well he is doing and how he looks so great. He weighs 25 pounds and is 32 inches long.

Thanks for the prayers and support. I will let you know the results as soon as I get them which could be a couple days or a couple weeks. Generally the longer it takes for them to get back to me the better...lol!

Keegan will be going back down again on the 24th just for a recheck to make sure everything is still fine. I will be sure to let you know of course. :)

Talk soon.

Your Friend,

Deanna

5th September 2003

Hey just wanted to check in and let you know Keegan is having a little bit of an arrhythmia again. He has an appointment next Wednesday ("Now brought forward to Monday"- David ) so they are gonna try to wait until then to do anything about it. I will be sure to let you know what I find out. Keep him in your prayers. Hopefully he just needs a little dose adjusting due to weight gain. Talk soon.

Your friend,
Deanna

19th June 2003

He got a zero!!!!!!!! For those of you who do not know how the scale works, 0 is the best it can be!!!!!!! They said everything looked great, couldn't have looked any better, and there are no problems whatsoever! I am so happy and so relieved. We were due a little good news. Thank you all for your prayers....they worked! Talk soon.

Deanna

14th June 2003

Keegan did great yesterday! Sorry I did not let you guys know last night. I was pooped when I got home. We all went right to bed. Dr. Boucek (Keegan's Cardiologist) says everything looks really, really excellent. It could not have gone any better. Keegan remained pretty dopey until this morning. He actually slept all night last night (nice break for me!).

We will get the biopsy results on Tuesday but Dr. Boucek said he would really be shocked if he were rejecting because everything looked so great. I will be sure to let you all know when I get the results. Thank you all for your prayers and support.

Deanna

11th June 2003

Keegan's checkup went great today! The doctor is very happy with how well he is doing. His annual study is still going to be Friday. He will have a stress echo and biopsy then. I will be sure to let you know how that goes. Keegan also does not have to go for checkups monthly anymore; he graduated to checkups every 3 months. HOORAY!!!!!

I am so happy for Keegan. Pray for a speedy, uncomplicated procedure Friday
with good results. Talk soon.

Deanna

22nd May 2003

 

Keegan seems to be doing better. He has been eating non stop and has not vomited anymore, or had diarrhoea. He really seems to be getting better. Keep the
prayers coming, they are working already!

Your friend,

Deanna

21st May 2003

Keegan was to have had his annual study on Monday. It had to be cancelled because the night before he started throwing up and having diarrhoea. He seems to be better today, but the pediatrician said he could get better for a few days and then start it all over again. Send prayers our way. :) They are going to try and reschedule his annual study in the next 7-10 days. I will keep you updated.

Your friend,

Deanna

17th May 2003

Keegan is doing awesome. He weighs 22 pounds and is almost 32 inches long. He is running all over the place now. The kid is sooo hyper, he definitely keeps me on my toes. He will be going on Monday, May 19th for his annual study. He has been doing really well. He finally has an appetite now too! He just wanted table food, he knew the baby food did not taste good. He eats everything now. His favourite however has to be Cheetos, and caffeine free Coke (as a treat of course)

I still have not worked up the nerve to take him out yet. Tomorrow, however, he will be attending church for the very first time. I am a little nervous, I don't know for sure how he is going to react to all of the people.

Our scanner is not working (of course) but hopefully soon I can send you all some pictures of my baby. He is getting so big, and he is so smart too. He says over 50 words and phrases and knows the first 5 letters of his alphabet. I am SO proud, can you tell? Hope all is well with you all.

Deanna

15th March 2003

Keegan had his monthly checkup Wednesday and everything is well. He gained one pound so now we are up to 22lbs...Hooray! Keegan will celebrate his first birthday on March 23rd. I can not believe it. Where has the year gone? Here is also a recent picture of Keegan standing all by himself! He also takes 4-5 steps all by himself. We are getting there!

Your friend,
Deanna

26th January 2003

Keegan is doing awesome! We went to get his 2nd RSV shot today and he weighs 20 lbs now. I can't believe it.
Your friend,
Deanna

26th December

KEEGAN IS HOME!
He got home on Christmas Eve. I am so happy he is finally back home. He is doing well. He is still a little weak but back to his old tricks! Last night he tried to pull the Christmas tree over on himself and partially opened a ton of presents. I love it! Thank you so much for your prayers and prayers from other members of the church. I will keep you updated on Keegan's health and I will definitely be visiting the web site often.

Deanna Dempsey

23rd December

Sorry it has been a few days with no new info but things are looking very good. They still think he may make it home for Christmas Day, but we will have to wait and see. Though I would like very much for him to be home for Christmas, Christmas will be held wherever Keegan is this year. GI was cancelled totally; Keegan is doing fine now on his own. No more diarrhoea, and no more vomiting...Hooray!!!!! The Hyperal and micro lipids are gone now also (they are basically just supplements to help him gain weight).

Now the only obstacle we have left is getting him to take his new formula....Neocate. For those of you who don't know this formula smells like it has already been digested before he ever gets it. So needless to say he wants absolutely no part of it, and I can't blame him because I don't think I would want it either. We even tried putting cairo (sp?) syrup in it to make it sweeter but he is too smart for his own good. He knew it was not his Isomil.

Well, other than the little feeding issue we have he is doing great. He is all over his bed disconnecting monitors so I know he is better. Thanks for the prayers, and I will update again ASAP.

Deanna Dempsey

21st December

Hey just wanted to check in with you all and let you know Keegan is getting better. He played all day again today for the 3rd day in a row. Dr. Boucek (cardiologist) says he really thinks they can avoid the GI scope on Monday, and tonight he plans on taking out the ng tube and going with bottle feeds only. Hooray!!!

They also keep telling me he will be home in time for his first Christmas, but I don't want to get my hopes up just yet. I am sure most of you know how the hospital discharge thing works. The diarrhoea is still there but we have gone from like 12 times a day to 2 or 3 a day and the amount is much much smaller. We have also had no vomiting for a week now, and no more fever either.

Well I am going to get out of here so I can rest for a while. I will update again soon. God bless all of you for all the prayers! Talk soon.

Deanna Dempsey

19th December

Today was a pretty good day. Keegan has gained almost all of his weight back, he is up to 17 lbs and 3 ounces now. He played all day long, and smiled non stop. The GI/biopsy has been rescheduled for Monday but they are hoping today was not just a fluke and Keegan is getting better all on his own. If by Monday things are still steadily improving they are not going to do the GIbiopsy they are just going to let Keegan take care of this all by himself, with a little supervision from the docs and nurses of course.

I will update again very soon. Keep the prayers coming. Every night I print out all of the emails I get and take them to show Keegan and I hang all of your prayers up in his room for him. If I didn't know any better I would swear he knows that they are all prayers for him to get better and come home real soon, he just grins from ear to ear every time I show them to him.

Thanks to all of you guys for your support, and for your prayers for Keegan.

Deanna Dempsey

18th December

Monday's GI was cancelled due to a fever that suddenly appeared and they rescheduled for Wednesday....also has been cancelled. They ran some bloodwork and Keegan now has a bacterial infection in his blood that will take several days of antibiotics to clear up. After that is cleared up they will reschedule the GI once again. The fever is gone, and Keegan is back up to 15 pounds. He is playing some, but mostly just miserable and fussy. Today he was so swollen from all the IV fluids he has been getting it didn't even look like Keegan. The doc says that should resolve itself in a few days.

I will keep everyone updated and I appreciate everyone praying for Keegan. I pray to God every night he will see Keegan through this and my baby will be home again soon. I will update again soon.

Deanna

16th December

Keegan will be having an upper and lower gi in the morning (Monday) with biopsy. They (well one doc anyway) still think it is just the lining of his stomach and intestines, but I am not convinced. One of the docs today asked me about colon problems in the family....there arent any that I know of.

(aghhhhhh!!!!!) today for the first time since this entire thing started Keegan started running a low grade temp and they had a really hard time getting it down. I'm sure you all know (especially the other special heart mommies) fever is not a good sign at all, not with our heart babies. They drew blood from his broviac and from his arm to see if there is infection somewhere. I pray to God there is not. Infection could lead to rejection and up to now this has not had anything to do with Keegan's heart, just his tummy. I will update asap.

Keep praying for my baby; he really needs all the prayers he can get. Oh yeah and he went back to 14 1/2 pounds, so we have gained a pound and a half back. Oh yeah and also today he didn't throw up but he has diarrhea way worse now. It was pure blood today. They had pushed the testing up to Wednesday but because of today's stools they moved him back up to tomorow again. I will keep you guys updated. I will definitely, if I can't do it myself either here or at rmh, have someone email everyone with an update.

Deanna

I'm sorry - someone asked me if I was staying at rmh (can't remember who..I think I'm losing my mind!!!!!) I have not been but since this is going to be such a long and drawn out process with Keegan I think I will have to convince myself to check in soon. I didn't want to do it earlier, kept trying to convince myself we'd be leaving soon, but that's just not the case.

14th December

We are going backwards again. Kegan is throwing up again and now has diarrhea (with blood) really bad again. Dr. Korang (his cardiologist) thinks there may be permanent damage to his intestines. They are waiting until Monday. If things aren't better by then he will have surgery to get a biopsy of his intestines and they want to have him scoped to see if they can figure this out. Keep us in your prayers. I will update again soon.

Deanna Dempsey

12th December

I need a special prayer for Keegan. He is very sick in the hospital for 5 days so far and they expect him to spend his first Christmas there. He had a bad virus and now he is over that but the lining of his intestines are so messed up he cant keep anything on his stomach at all. He has lost 5 pounds (down to 13 lbs @ 8 1/2 months. He looks so bad.

They are feeding him through ng tube now and today he had surgery to put in a broviac cath so they can give him more nourishment. Please keep my baby in your prayers, he really needs them right now. I will try to keep you updated when I get a chance.

Deanna Dempsey

 

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