Posts about a loving heart

The previous posts are all e-mail updates that we sent out to family and friends during the time of Aliyah's heart problems. If they can help anyone going through similar difficulties I am happy to share them. God bless!

3-??-07

Aliyah is home .... She and I were sitting around the hospital room mid afternoon Thursday and they came in and said they wanted to send her home. The heart racing incidents had subsided and her second biopsy to check for rejection of the heart was again negative, excellent. After the false start on Tuesday I refused to pack for awhile, but eventually I got packed up to go. I should have waited awhile...since, of course, we could not leave without a little drama. The Central IV line they had put in her neck bled alot when they removed it. Quite a mess actually. The nurses got a little wet, but Aliyah kept quite calm, as usual, and they got that bandaged up and she was able to come home soon after.

Can Aliyah have visitors? Yes, however, she is very immuno-suppressed and should not be around people who are sick. They are also discouraging her from being around large groups of people for awhile. In public she will need to wear a mask for now, but she can get out when she wants to. Physically she is a little weak and will be for a few months, but Aliyah was able to take a 15 minute walk yesterday and is making progress each day. She is on strict dietary guidelines, low sugar especially (concentrated sweets), but also low fat, low cholesterol, low sodium. That will be hard for her, but she is adjusting pretty well already.

Aliyah will always have a few doctors appointment & tests and medications to take, but she should be living a mostly quite normal life in a few months. By Fall semester she should be back at Purdue full-time in Computer Graphics Technology and will probably still be able to complete a couple of her current semesters classes over the summer. The others she can retake in the Fall or whenever. Her mother and I are very happy for her.

Thanks again so much for all your thoughts, prayers, and help through this very difficult 2 years.

3-??-2007

Aliyah is doing well. She is going for longer walks in the hospital every day. Yes, she is still here at St. Vincent's.

Aliyah was almost out the door Tuesday afternoon, but the new heart decided to race a few times and they decided they should watch her a couple or a few more days. Her magnesium was low and could cause things like that, but it could be other things too. So... we will wait a little longer to go home. She had her second biopsy done this afternoon and we should get results in the morning. Perhaps Aliyah will even get to go home tomorrow, but it could be next week. They want to figure out why her heart is racing sometimes before sending her home. They even said it could be an electrical connection to the new heart that they might have to go back in an cauterize. We hope and pray that is not the problem. The bottom line is that it is not a matter of if the new heart will face some rejection issues, but but when, and they will be adjusting her medications over the coming years to make sure things are working well for a long time.

Anyway, Aliyah also got to take her first shower in about 2 years today, so good things are still definitely happening.

3-??-2007

Aliyah is still doing quite well. She eats Lasagna and other normal foods now. She walks up and down the hall a couple of times a day. Significantly, Aliyah also had her first biopsy Thursday to check for any signs of the heart being rejected and it was happily negative. They will already be able to ease back on some of her medications because of that. She has a couple of minor things to take care of and then should get to come home on Tuesday. She will then be making regular trips to Indy once or twice a week and doing cardiac rehab in Lafayette 3 days a week also.

She is in room ... in CVPV of the main St. Vincent's hospital building on 86th street, like the other times. She can have visitors. Anyone who is not sick is welcome. She cannot have flowers or uncooked fruits and vegetables. There is a sink just outside the door to wash your hands thoroughly before entering the room. Visitors are not supposed to get up in her face, so while she likes hugs, they are not currently recomended.

The phone number for her room is .... Please do feel free to call. Aliyah is normally awake until 11pm and normally wakes up by mid morning.

2-??-2007

Aliyah is doing great. All the chest tubes are out. Most of her IV drips are off. She is still in CVTR (cardiac recovery). Visitation is limited, but people have stopped by to say hi through the door or spend some time with Dana or I. She should move to the CVPV unit on Wednesday or Thursday where the visitation is much more liberal.

Her immune system is being knocked down severely to counteract the body's natural tendancy to reject the new heart, but the modern rejection medicines and the prior to surgery crossmatch prevent most of those problems. However, even minorly sick people should obviously not visit her right now.

Aliyah is sitting in a chair for more than an hour at a time and eating regular food instead of being fed through the "crazy straw" (tube through the nose) like other times when she was too weak to eat. So again, her progress is wonderful.

I hope you all are well.

2-??-2007

Everything is going great. We went back to visit Aliyah soon after her surgery yesterday and she was surprisingly awake already. Last time she was out for a week. Anyway, she was nodding or shaking her head yes or no and was coherent. She is only slightly loopy from the very little bit of morphine she gets for the pain. Amazing. About 4 hours after she came to cardiac recovery after the surgery, they took the breathing tube out and she was talking very soon afterward. I went home last night to get some sleep and came back today and she was sitting up in a chair. Heart transplant patients have been known to come home 2 to 3 weeks after surgery or sometimes even a little earlier when things go really well. So far Aliyah is on track to do that. This is quite a contrast to her previous surgery recoveries. The surgery was nowhere near as long as last time (last time was a actually a double with the back to back explant and then replant), she was in better shape coming into the surgery this time than the first time, and she had less bleeding after the surgery this time. The bottom line is wonderful, Aliyah will finally be untethered from the machine and especially from her parents(most teens nightmare). On the downside, as one of her friends noted, she has lost her cool points for being a cyborg the past couple years. I have heard Aliyah voice no concerns over the loss of that distinction.

Thanks again for all your thoughts and prayers for Aliyah over these past almost 2 years.

2-??-2007

Aliyah is in recovery. Everything is going well. The heart is strong and vibrant. The bleeding is not overly extreme, even with all the scarring from the other surgeries. It is as good as they could hope. She will not wake up for another day or so, but should recover more quickly than she did from her VAD surgeries.

Thank you all for your thoughts and prayers. Aliyah is almost ready to dance in the rain, take a shower, have a snowball fight, and other normal things. Wonderful indeed.

2-??-2007

So far, so good. The new heart is in and pumping well. Next, Dr. Wozniak has to remove the VAD and VAD drive-line. After that they will remove her from the heart lung support and have to deal with the bleeding which is exacerbated by the blood thinner she has been taking for nearly two years, but all the news is great as of now.

Thanks for all the thoughts and prayers

2-??-2007

Well, Aliyah is getting a new heart. She was called today and then crossmatched and they will be starting the transplant surgery around 10pm tonight. They may be done by 4am or so. We are at St. Vincent's now and will eventually move to the CVTR waiting room around 10pm or so, the phone number there is ....

Anyway, be praying and I will let you know when we know what is happening.

2-??-2007

Well, Aliyah has had her first page with the possibility of getting a new heart. They have drawn blood for tests, but will not know anything until 8:30pm or later. We are at St. Vincent's now, although it is possible we will be driving home later tonight to try again another time. The room phone number is ... if you would like to chat with Aliyah. She is watching bad movies and is very hungry, but is not allowed to eat.

Anyway, be praying and I will let you know when we know what is happening.

7-19-2006

I hope you are all having a nice summer.

Aliyah now has a pager and is supposed to be listed for transplant tomorrow, Wednesday. She is a little quiet tonight and somewhat pensive. Pretty understandable. I too must admit it makes me a little nervous. Dr. Wozniak is great, but this will be a new chapter in Aliyah's life. It could take a week, it could take a year, but in the end Aliyah will get a new heart. The last email below has some of the details of how the process will work.

Dana and I are a bit tired, but doing okay. The boys too are fine.

Pray that Aliyah's heart and our hearts will have God's peace as we enter this coming year with a bit of trepidation but with much hope.

Love you all.

6-20-2006

Yes, Aliyah did maker it home last Thursday afternoon.
A relief for sure. It is nice for all of us to be able
to sleep in our own beds at night. Almost normal. I am
back teaching summer session at Purdue and Dana is
back working also. Aliyah is hoping to start work
again sometime during the second half of July.

Aliyah is a little weaker than at the end of last
April over a year ago when she came home. However, she
gets a little bit stronger, walks a little further,
and her voice sounds a little stronger each day.
Aliyah will slowly get back into the activities she
loves such playing her guitar, singing, writing
poetry, chatting online, and drawing.

She will be doing cardiac rehab again for awhile. She
might be put on the transplant list as early as this
Friday. It is possible they will wait a little bit
longer, but there is no longer a question in the
doctor's minds as to whether or not she needs a new
heart. Soon she will have a pager and be on call 24/7,
for perhaps quite awhile.

To put it simply, when she gets a call on the pager,
we will head immediately to Indy, then they will mix
her blood with the blood from the prospective heart
and see if it fights. If it fights, then she comes
home and waits some more. If the bloods like each
other then she gets a new heart. It is obviously not
quite that simple. Even before heading to Indy there
will be a cross-checking of many different factors
such as size, age, gender, blood type, etc., but that
should give you the basic idea.

Anyway, we are somewhat emotionally drained, but
otherwise pretty healthy and basically okay. Aliyah
certainly will enjoy visitors and phone calls
.... Please do stop by and say hi. Or call
to arrange a time when she will for sure be at home,
she had and has appointments at some point in time
every day this week.

Please do not hesitate to ask questions when you have
them or ask for an update when I get lazy. :-)

Thank you all for your continued support. It has been
wonderful to have so many that have encouraged us,
visited us, and prayed for us.

6-9-2006

Aliyah is walking around in the hospital unit several times every day and eating a little food. We are getting her Smoothies from Smoothie King to supplement her calorie and protein intake. That is good because she did lose her feeding tube again Monday night, for the fourth time. She says it got caught on something in the night ;-) . The doctor says as long as her intake of nutrition is sufficient, then they do not have to put the crazy straw back down her nose and throat. So far so good on that note.

They are tentatively planning on Aliyah leaving the hospital this coming Wednesday, or perhaps a day or two later. They need to see her get a little bit stronger, keep eating, and get her heart meds balanced out correctly.

The reality of the path she must walk has just really sunk in during the past few days. So, Aliyah is understandably a little sad at times, but overall doing okay. As Dana said to me, we have all been processing this for 3 and half weeks, for Aliyah it is still pretty new.

I hope you all are having a nice weekend.

6-5-2006

Things are going well, but it has been a little crazy. Once Aliyah started coming to, Dana or I spent the night in her room in the recovery unit with her. Not much sleep. She is now doing well and was just moved to a regular room to finish her recovery from the X-plant and new VAD surgeries, so she can go home for awhile.

Just to give you a sense of the past week. Things had been progressing slowly since the last update I had sent, then... Last Wednesday Aliyah had a fever from infection, was detoxing from the narcotic anesthetics she was on for the surgery and post surgery, had unknowingly pulled out her feeding tube for the second time, had to have a new line put in her arm for IV's, was experiencing trembling from her breathing treatments, etc. In the end, by Wednesday afternoon her heart rate hit 200 at one point. I had only previously seen it hit 162, and that was in between the two surgeries 3 weeks ago. They fixed the problem quickly and got her heart rate down, but it was a scary hour or so. Then Thursday night Dana dozed for only a few minutes and Aliyah, in a dream state, pulled her small bowel feeding tube out for the third time. Dana and I then employed a system of spelling each other so we could keep a constant eye on her at night. Thankfully, mission accomplished and she passed most aspects of her swallow test today and started eating some real food.

Dana and I are quite tired, but otherwise doing well.

Aliyah is in the main hospital building at St. Vincent's off of 86th Street, the main parking lot is on 86th Street, but you get to it by turning onto Naab or Harcourt roads. She is in room ... Good times to stop by and see her would be from about 11am to 9pm or so. Calling her room directly ...during these same times is also good.

We know God is continually walking alongside us through this, and many times in the guise of one of you. Thanks.

5-26-2006

Aliyah is doing much better. They finally had the breathing tube removed today, which was getting pretty annoying to Aliyah. They also got the rest of the drain tubes from the surgery removed. They have been able to wean her off most of the heart medications she was on after the surgery. She has the crazy straw down her nose so they can feed her better until her stomach can handle food. It basically goes, down her throat, through the stomach, and into the small intestine, thus bypassing the stomach. Her heart rate is down and her blood pressure is up, both are very encouraging signs of improvement.

She is mostly still very groggy, but comes around and is able to squeeze our hands on command at times. She can also answer yes/no questions by nodding or shaking her head when she is alert. It will take a couple of days before she can talk very much.

The phone number in the CVTR waiting room in the Cardiology Building off of Naab Road just south of 86th street is .... Dana and I will still be here most of the time. It will be a couple or a few days before Aliyah will be able to interact with visitors much at all. Her friend Ari came in and held her hand for a couple of minutes, but that is about all she is capable of currently. She mostly just needs to rest for a couple or a few more days, then she will need, want, and welcome as many visitors as can make it by. If you do want to briefly visit with her over the next few days, the visiting hours are pretty strict in CVTR (9:30-10:30, 2:30-3:30, 4:30-5:30, and 8:30-9:30), and no one under the age of 14. When she is moved to CVPV in a few days, then the visiting hours will be much more flexible.

Many have asked about Dana and myself. We are tired, but doing pretty well. We have had a lot of support from friends, nurses, and others here at the hospital. We are encouraged and enjoy having visitors as well.

5-21-2006

Aliyah continues to slowly improve and is quite stable. They are keeping her sedated for now, so she is still not awake yet. With all the blood and other liquids put into her during the surgeries, Aliyah gained about 25 pounds of water. They want to get most of that excess liquid out of her before taking out the respirator tube that helps her breathe. That may come out in a day or two and then they will bring her out of sedation. Again, that will be the tough part and is when she will need the most support from Dana, me, and everyone else. Aliyah does not know yet that her heart did not kick in and that she will now be listed for transplant when she is physically ready.

Dana, I, and the nurses are playing Aliyah's music for her while she sleeps. Pray that she sleeps peacefully. Pray that Aliyah will be strengthened in her spirit by God and hope in Him.

5-17-2006

Aliyah is out of open heart surgery to reinstall a Ventricular Assist Device. She has a new VAD and is stable. It will be much like last Spring when she came out of surgery and she will be pretty much out of it for 5 days or so. Although the possibilty of waking up still attached to the machine was discussed with her, it was by far not the expected or most likely outcome and Aliyah will be quite upset. She knows this means a heart transplant is now virtually inevitable. That will be difficult for her to come to grips with. Pray that God strengthens her spirit and comforts her heart.

Thanks again for all your thoughts and prayers.

5-17-2006

Unfortunately Aliyah started going downhill, so they are right now taking her in for open heart surgery to put a new VAD in her. Dr. Wozniak has rested a little, but pray for him to be strengthened in the heart and mind. It has been a very difficult day for everyone involved. We will let you know more later.

5-16-2006

This is a request for prayer. The VAD has been removed and Aliyah is in the recovery room, but Aliyah's heart has not yet kicked in as they had hoped. Aliyah is stable but very weak. They have her heart supported as much as possible and are hoping for a gradual improvement, but Dr. Wozniak has told us that the VAD may have to be put back in if she does not improve over the next couple of days. Her condition has not changed or deteriorated over the past 7 hours or so.

I will try to send out another update when we know more.

Thanks for your prayers.

5-15-2006

The surgery is Tuesday (tomorrow) morning starting at
7 a.m. They are really not absolutely sure whether
they will remove the vad because they won't know until
they get in. The likelihood is that they will remove
it though. Her tests have been really good so far!

5-8-2006

Dr. Wozniak, aka "The Woz", "Woz", or "His Wozness",
to those as yet unaware of his nickname, says that it
is time to take out the VAD. So, we are back at the
hospital. They will turn the VAD flows down this week
as far as they can and make her heart get used to
pumping without much help. The date for the open heart
surgery has been set for next Tuesday to remove the
VAD. So, we have about one week before the actual
surgery. She will likely be in the hospital in
recovery and rehab another 2 weeks after the surgery.
That is about far ahead as I want to think about right
now. Things do have a way of changing sometimes. We
are just trusting in God, and he has been with us
throughout this entire difficult time.

It will likely be a very quiet week, so visitations
and phone calls are always welcome. You can call
directly to her room, ..., or call the toll free
number and then ask to be connected to her room
If you are stopping by you might call
Aliyah and see if she is sick of hospital food yet and
offer to get her some fries, a burger, or a baja beef
burrito. :-)

3-16-2006

Aliyah is done with her tests at the hospital. The results were most encouraging. To use Dr. Wozniak's words, it looks like a normal heart. Her ejection fraction is over 50% and he is ready to schedule a time to take the VAD out. Probably early to mid May soon after Aliyah's final exams. He will wean her off of her dependence on the VAD for 7 to 10 days to allow her heart get used to doing the vast bulk of the work, perform the open heart surgery to take the VAD out, then Aliyah will have about a 6 week rehab. Hopefully she will only need to be in the hospital for about 3 weeks or so.

Thanks again for all your thoughts and prayers.

3-12-2006

I hope this update finds you all doing well. Like last October, Aliyah goes into the Hospital this Monday for a few days for some tests. She seems rather robust most of the time. Hard to keep up with her on campus some days. She did work hard enough to make the Dean's List in her first semester at Purdue in Computer Graphics Technology. This semester is as busy as the Fall semester, I am extremely tired, but trying to stay reasonably healthy and rested. Along with Aliyah, her mother and I also have appreciated your prayers, kindnesses, and friendship.

As well as Aliyah is doing, right before Christmas, Aliyah did suffer a very minor stroke. It really only lasted a few brief but scary minutes and then was completely fine in a couple of hours. So, in spite of everything that has gone well, we know that she is still in God's hand and, as with us all, life in this world is tenuous.

To review a little. In October, her ejection fraction of blood being pumped out of the heart each time it pumped had risen from below 10% last April to over 30% in October (normal for most people is 50% to 60%). In October they said her heart was already strong enough that they were no longer considering a transplant, but instead would try to wean her off the Ventricular Assist Device (VAD) and then remove it. They said she was already strong enough to remove the VAD in October, but wanted to wait and see if her heart would continue to get stronger first. There is also a medication she started to take that they wanted her to be on for 6 months before they removed the VAD. So, the current plan is to have open heart surgery sometime in May and then let her rehab over the summer. At this juncture, they do say she will likely be on heart medication the rest of her life, but who knows. They were not expecting her heart to get better either, so we are simply pleased to have her still with us in this world and to not be facing the prospect of transplants for the remainder of her life. I feel very blessed.

I will send more information soon in a few days when we know more.

Friday was the 1 year anniversary of Aliyah's initial diagnosis and admittance to the hospital. Thanks again for all your love that has helped us weather this most difficult of years.

2-1-2006

First, let me apologize for not getting this out sooner! I have not sent an update on Aliyah's condition since, I'm not sure when! I do know that she has visited the hospital since my last note to you. I will copy here an e-mail that Owen sent out to his contact list. If you have heard all of this there is no new news to tell, but she is scheduled to go back into the hospital during spring break and get another check-up to see if her heart has improved more. At this time the anticipated date for removal of the VAD is sometime this summer. We cherish your prayers for this ongoing situation and many still pray for total healing for her. Thanks for everything you do for our family! Please know that we appreciate everyhting anyone has done for us during this challenging time in our lives.

Love,

Dana

Hi,

Aliyah is doing somewhat better. Sorry you've had to wait so long for information. The last few months have been crazy. Noah and Aliyah are both freshmen at Purdue and Dana or I have to be with Aliyah everywhere with her backup VAD driver. We are finally getting things balanced out a bit. Aliyah is doing well in her computer graphics program and has made several friends. She also continues to work two or sometimes three days a week at the Carpenter's Son bookstore. She is also taking her quitar lessons, but doesn't have as much time to practice as she'd like.

Anyway, in June her cardiac stress test had a score of 22, she recently went back into the hospital for tests over October break and her score had increased to 27. The doctor's were all very pleased and pleasantly surprised at the large increase. I am not even sure what the number means, but Dr. Wozniak (The Woz) even joked that he probably wouldn't have done as well. Also in June her ejection fraction was at 20% each time the heart pumped and now it is in the 30 to 35% range. The doctor's were also happy and surprised by that level of improvement.

Right now it appears that Aliyah will likely go in for more tests sometime around January before they make any final decisions, but the game plan is now to wean her off the VAD and then remove it. Certainly better than the heart transplant that seemed all but certain last April when she first left the hospital. It will mean another open heart surgery to remove the VAD, but keeping her own heart is a welcome thought.

We are very grateful for the all the remarkable doctros and nurses at St. Vincent's who helped her so much. We are thankful for all your thoughts, prayers, and support, without which I am not sure how we would have made it through. Most of all I am grateful for grace from above that comforts our hearts and loves Aliyah dearly.

5-04-2005

Aliyah is home as of last Thursday night. She is doing
well and actually went back to Indy for the first of
her weekly clinical doctor's visits this morning. They
are pleased with her progress so far. They want her to
get stronger, exercise, and eat well, which of course
is a difficult assignment for most teenagers. :-)

They will let her get a bit stronger and do another
echo cardiogram in about a month before putting her on
the transplant list. Although it is not expected by
the doctor's at this point, we are still praying that
God will heal her heart. It is however a miracle that
she is still with us after all that has happened in
the last 7 and a half weeks. I am very mindful of
God's grace throughout this ordeal.

Some have asked me, 'Isn't it great to be home?', and
the answer is a qualified yes. We are really in the
middle of a marathon, we are tired, but have settled
into a rhythm that we can hopefully maintain for a
good while. It's great to hear her practicing her
guitar, as she is doing right now in the basement, but
this is a long haul. The support from friends and
family has been amazing and very encouraging. Thank
you all.

Aliyah has already been to a rock concert, had a sleep
over, and returned to the small Monday night house
church we have been attending for awhile now. It is
indeed wonderful to be able to return to a degree of
normalcy. If I can just get through the pile of mail
on my desk, that would be nice too. :-)

Anyway, thanks again for all your thoughts, prayers,
and assistance, you will never know how much it all
has meant to us.

4-26-2005

Quick update. Aliyah is scheduled for an 8 hour
excursion out of the hospital on Wednesday to go
shopping with mom and get used to being more
independent. I will be joining them for dinner, then
she will return to the hospital for the night.

NEW: Aliyah is being scheduled to leave for home on
Thursday, instead of Friday. :-)

Seven weeks is long enough to live in a hospital. I
have begun to reflexively refer to the hospital as
home without thinking about it and then shaking my
head slowly when realize what I have just said. :-)

Thanks again for all the encouragement and help.

4-5-2005 & 4-8-2005

Quick update. Aliyah is out of the recovery unit :-). She has at least two weeks of rehabilititation ahead of her. Visitors may come at will. Okay not at 3am. If she is napping, she will wake up soon.

The room is in the main hospital building of St.Vincent's, still off of Naab road, but closer to the next road which is Harcourt. Turning off 86th Street onto either road works. The room number is... and the room's phone is ...

Thanks again for all your thoughts, prayer, help, and love the past 3 and a half weeks.

4-8-05

Aliyah is doing better everyday! She has most of the IV's removed. At this time she is only on heparin which is a blood thinner. She must be on one with the implanted device and when she leaves the hospital she will be on coumadin. She had a cat scan of her brain yesterday because she noticed some droopiness in one eyelid and also a difference in size of the pupils so they were checking her for a small stroke(which can occur with the device and blood clots) It turned out that she had nothing wrong as far as that goes. She passed her swallow test so the feeding tube has been removed and we just need to encourage her to eat often. She has lost 15-20 pounds during her stay here. They even upgraded her diet to regular food today instead of the ground food she had been eating. Physical therapy comes in once a day and she has other exercises she does several times a day. When she gets the portable pneumatic driver for her IVAD she can start walking the halls. Hopefully by the middle of next week! She will not be put on the transplant list for at least 6 weeks following her last surgery because she needs to get her strength back, etc. I expect she will be here at least 2 more weeks but the doctors haven't really given us a timetable.

I just want to thank everyone for all their prayers, support, visits, phone calls, and any help you have given with the family. The staff here have all commented on the love and support shown to our family by you all. You are terrific and we love you all !!

Will continue to let you know what's going on with Aliyah as she progresses.

She can receive visitors (and cards or flowers for those who have asked).

Also if interested in the device she has you can check it out at www.thoratec.com She has the device that she said looks like a bunny and it is implanted near her stomach. Her driver will be like a stewardess case on wheels.

4-2-2005

Aliyah is doing better physically each day (off of oxygen, chest tubes removed, and most medications have been reduced or removed completely; also she can stand up for brief periods of time), which is certainly great, but now comes the harder part. She is aware and thinking and pondering and understandably a little down. It also time for physical rehabilitation, which will be hard, and often painful work.

Aliyah still has persistent pain and still has a self-serving morphine drip she has learned how to use as needed. She also still has the feeding tube, which is uncomfortable. As several have agreed, she is probably getting better nutrition than if she ate what she wanted to :-), nonetheless we are hoping she will pass her swallow test Monday morning so she can have it removed.

Aliyah is still tired off and on, but is able to have regular visitations (for now visitors over age 14)most of the time and has even watched a couple of movies now. If you are planning a visit, using the standard visiting hours for the Cardiac Recovery Unit is still best (9:30 to 10:30am, 2:30 to 3:30pm, 4:30 to 5:30pm, and 8:30 to 9:30pm). If those times do not work for you, Dana or myself can get you in for brief visits most of the time. Obviously, if she is sleeping or having a procedure done, those would be exceptions. Usually Dana or myself are either in the room with Aliyah, in the waiting room, or occasionally in the cafeteria getting a meal. There is also a sign-in sheet on the waiting room's main desk that tells where we are if we have left the area.

As I have previously mentioned, she will need a lot of encouragement from everyone to be able to walk this difficult road, so please do stop by to say hi when you can.

3-28-2005

Aliyah is still very weak from the surgery. Her voice is stronger today though. She is having some trouble with coughing when she drinks and the speech person is afraid she might be aspirating liquid into her lungs and this could lead to pneumonia. As of this afternoon she was to be given nothing by mouth util a swallow study can be performed. She will probably have a swallow study tomorrow and because she hasn't eaten any food for 4 days (and was unable to keep much food down for the last 2 weeks) she will begin getting nutrition through a feeding tube tonight or tomorrow. I hope that will help her build up her strength. She has been off the respirator since yesterday at 9:30 A.M. and while her blood oxygen is good, her lungs are not looking as good today as yesterday. If she needs to they will put her back on the respirator until she gets her strength back. She also still has a fever but that is not totally unheard of after an operation like she has gone through. They are worried about an infection though. She started on blood thinners today so she won't develop blood clots with the device and is on morphine for pain. That's it for now. Thanks to you all for caring!!

3-24-2005

Well, the defibrillator is installed, but Aliyah developed arrhythmia during the procedure and had to be shocked and stabilized. Therefore, she is back in the ICU and has a respirator tube in addition to several IV fluids and medications. They have stabilized and improved her vitals overnight and she is heavily sedated and mostly unconscious because of the uncomfortableness of the breathing tube. She is slowly trending towards continued improvement and they are hoping to take the breathing tube out tomorrow, but we'll have to wait and see. Needless to say, we will not be coming home today or tomorrow as had been pretty well assured if the procedure to install the defibrillator had gone well. Her situation is still touch and go. Please continue praying for her continued recovery. Thank you all so much!

3-22-2005

Aliyah was moved out of the Pediatric Intensive Care
yesterday afternoon. YAY!! She is now on the third
floor in room .... They will do some more adjusting
on her medicationa and put in a defibrillator and if
all goes well she may be released Thursday! The
medication that she is on has caused no noticeable
improvement in her heart function and we will have to
wait and see if there is any improvement over the next
few months. I will send more updates as they are
warranted and please continue praying for healing, and
strength both emotionally and physically. Thanks!!

3-18-2005

Today things are going about the same. Aliyah is receiving her medications and really concentrating on keeping them down. That is the most challenging thing for her as the doctor's are trying to find a way to stabilize her so she can get home. If she can't keep the medicine down they can't see if it has any effect on her condition. She did walk to the nurses station and back to her room today which was encouraging to her. She says that she feels like she is trapped. She had anticipated being able to get outside in a wheelchair but the doctor in ICU nixed the idea ( very upsetting to her), maybe tomorrow. She really appreciates the telephone calls and visits from everyone! At least while she is in PICU she can be called toll-free... and her room number is ... Well lasagna and chocolate milk tastes good to her now...here's prayin'. You are all a real blessing to us!!

3-16-2005

Aliyah has had no heart arrythymias since Monday night at around 9:00 p.m.

This is great news and they have her on several medications now. Some to control heart rythym, some to help her heart squeeze better, etc. Perhaps this evening she can get up and walk to the nurse's station and back to her room. We have had meetings with the heart transplant doctors just to get us prepared in the event that she might need one and she still may need a defibrillator put in. She is doing better in some ways but the doctor's still don't know whether her heart function will ever get better. It is really a waiting and watching type thing since she has no known history. I'm sure that she will feel better when she can get out of her room for a little while. She probably won't have another echocardiogram until tomorrow or the next day and they can tell by that whether her heart squeeze is any better or worse. That's about all the news for now. Thanks for praying!!

3-13-2005

I just wanted to send an update on Aliyah. We went to her pediatrician on Thursday for a sick visit as she was having trouble with slight pressure on her chest that would lead to coughing spells, and a little shortness of breath. After a chest x-ray and an EKG her Dr. said that her heart was enlarged somewhat but by no means "enormous" and she should go to Home Hospital for an echocardiogram (an ultrasound of her heart). She said one of the pediatric cardiologists from St. Vincent's serendipitously happened to be in town on Thursday's. So we went and did that and the Dr. came in and told us that she had cardiomyopathy or acute myocarditis which means that her heart muscle is not squeezing very strongly. This can be caused by a viral infection which goes to the heart or it can be more long standing. The viral kind (myocarditis) can be treated and some repair of the heart can occur in about 2/3 of those cases. The cardimyopathy cannot be cured and may result in a heart transplant down the road. He conferred with her peditiarician and because there are no pediatric cardiologists in Lafayette her Dr. wanted her to come here to St. Vincent's. At this point the doctor's have no way of knowing which type she has because there was no indication that she had any problems with her heart before last Thursday. They are treating her for the acute myocarditis and I'm praying that that is what type she has. Since she has been in the hospital she has been unable to keep down any food and developed some severe headaches.

This along with unusual heart rhythms can be side effects of the drugs she is taking. Well, she developed those last night at 10:30 and they continued for about an hour until the Dr. decided to take her off that drug and see what happened. This morning she has eaten a pretty large breakfast (and so far kept it down) and her headache has decreased. He heart rate is good but her blood pressure is lower than they would like to see. As they tell us there is a delicate balance that they need to maintain between heart rate and blood pressure. She is in the pediatric intensive care unit (PICU) at this point but before she leaves she will be moved back upstairs. While she is in PICU there is a toll-free number you can call to talk to her or us . We'll keep you updated and please continue to pray for us all.Thanks!-Dana