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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.