Sunday morning

Rachel seemed to have a pretty good day yesterday and overall she looked and acted like she felt better.  She had several visitors and even started a craft project for her friend, Emily, who is down the hall waiting on a new heart too.
Things have seem to level off for the past few days and we are back to being "bored."  We hope and pray that this continues until she gets her new heart.  On a good note, they were able to start her feeds back through the feeding tube at a very slow rate and so far she has not had any complications (heaving, nausea) since she started back on the feeds.
She had a pretty good night last night and slept well, which meant that Tammy was able to sleep too.
Praying for another "boring" day today.
Thanks to my sister, niece and her little girl for visiting us yesterday as well as a wonderful couple from our church family.
Also, please remember to keep Rachel's friend, Emily Warren, in your thoughts and prayers too.  She had an off day yesterday and wasn't feeling too good. 

Tuesday update

After rounds this morning, here is the latest.  The doctors are showing concern about the fact that her kidney numbers are up and are closely watching the liver numbers too.  Yesterday, the discussion was that they would hope that the kidney numbers would plateau or level off, however, as of this morning, the numbers were still going up slightly.  Right now they don't know if ihe numbers are up because she hasn't been peeing-out much lately because they went down on the Lasix a few days ago after they thought she might have been to dry.  So now they are going back up on the Lasix to see if that works. 
Just now, the Renal doctors came in to assess her per the request of the cardiac and critical care doctors.  The renal doctor said that the kidney issue could have been caused by the recent arrithymias, which in case the kidneys just have to recover in their own.  If its due to too salt or some other chemical in the blood work or urinalysis, they would have to see about adjusting medications and/or the TPN to correct the issue.  And, if it is cardiac-related, they will have to work with cardiology to maximize the blood flow that is going to the kidneys.  He did say that if he had to guess, he would think that it had something to do with the arrithymia issue because her kidney numbers looked okay before the arrityhimia issue.  So, to recap, please pray that the kidney issue is temporary and can be corrected and not a blood profusion issue.
Also, this morning during rounds, Dr. Fricker (The E.F. Hutton of the group; when he speaks, people listen) did say that she has been listed as a 1a status for quite a while and believes that she should be of the highest priority for the next matching heart. 
We resolved the issue from last evening regarding miscommunication with certain doctors.  During rounds yesterday morning, Tammy overheard one of the critical care doctors talking about Rachel's liver and kidney numbers and the issue with her gut and made it sound as if her body was shutting down, which in turn, caused Tammy to call me all worried.  We spoke with him this morning expressing our frustration with how things are presented and he agreed to not mention anything to us until it is addressed by the whole team.We would like to apologize for our part in the any miscommunication with all the doctors. We truly have the best set of doctors anywhere.

Monday afternoon/evening

Well,we are just about to go postal on some doctors up here in the unit as they have done made Momma mad and you know the old saying, "If Momma ain't happy ain't nobody happy."  During rounds this morning, the critical care doctors made it sound as if the numbers indicated that Rachel's liver and kidney were taking a major hit from her heart failure.  They made it sound that her body was beginning to shut down.  However, when the surgeon came by later on this evening (he was not present during morning rounds) he said that she is stable and maintaining.  He did say that her liver numbers look good but her kidney numbers were elevated.  He said that as long as the kidney numbers plateau out and don't go up dramatically, she should be okay.  He did say that he was concerned about the fact that she hasn't been able to get her feeds through the feeding tube cause she has felt nauseated and having "loose poops."  He said that he has seen this before in other kids waiting on a heart to where their digestive system begins to have problems.  He added that it is probably due to the blood not flowing out enough to her gut.  We did ask him about all of the problems she is encountering:  the digestive system issue, the liver/kidney numbers, etc., and he said that this is not uncommon in children waiting on a heart; that he has seen it before.  He did caution us that they are still very concerned, mainly about her not being able to get enough nutrition.  They did start her on TPN and Lipids to counter her not getting the nutrition through the feeding tube.  TPN contains all of the vitamins and nutrition that she needs and the Lipids is fat but the problem is that its coming through an IV and is not the ideal way to get nutrition into the body; it is not designed for long term use.
Also, early this morning, around 2:00 a.m., she encountered another arrithymia issue causing the pacemaker to go off.
So, please pray more urgently that a heart will come in really quick and in the meantime that she doesn't have anymore arrityhmia issues as that hurts her total heart function even more than what it is.
So to recap:  Pray for a heart to come in quick.  Pray for a heart to come in quick,  Pray for a heart to come in quick.  Pray for a heart to come in quick.  Hopefully, a heart will come in quick.

Sunday afternoon (07/24/1e

Well, unfortunately, this weekend has been frustrating and not boring.  Late in the week, they started Rachel on antibiotics b/c something grew out of the sputum and urine cultures.  However, when they repeated the sputum culture, it came back okay, so, they aren't sure whether it was a faulty reading or not.  They still have her on an antibiotic to treat the past urinary tract infection as well as anything else that might have tried to start.

As if that wasn't enough, Rachel has been having a time with nausea due, they believe, to her not being able to handle of all the feeds coming through the feeding tube.  They have switched feeds from a higher concentrate to a lower concentrate and lower the rate at which she was getting it through the tube.  Unfortunately, that didn't really solve the problem so they (at our request) stopped the feeds for two days to give her and her stomach a break.  She hasn't had the nausea and wretching as much since. They have since started her on TPN and calcium chloride drips.  They are going to start her on lipids (fat) sometime this evening and try start her back on her feeds as slow rate as possible with something that is very lightly concentrated.

And then, last evening, she started having arrithymia issues again,  At one point during the evening, her heart rate accelarated to about 222 nearly causing her pacemaker to kick in before she broke the arrityhmia on her own,  Also, her heart rhythm changed for some unknown reason early this morning.  They brought in a representative from Medtronics to interagate the pacemaker.  Still not sure what caused the arriythimia but the pacemaker did what it was suppose to do.

So, we ask that everyone please pray for a boring week, and by boring, we mean that any/all infections will heal up and that she will not have anymore arrithymias or strange heart rhythms and that nothing else heart or health wise shows up.

Wednesday 7/20/2011

Haven't updated much but Rachel hasn't been feeling herself. The last set of urine cultures grew something and her sputum grew something. They have started her on Zosyn (an antibiotic). However she has been sleepy and not herself so they have run another set of cultures today. We had a scare that the arrhythmias were starting again. Thankfully it is just the loose lead making noise so they set the pacemaker a little higher hoping not to scare us again.

I would like to personally thank the special group of women that came to visit and took me to lunch on Monday.
It was great seeing you all and it really meant a lot.

We would like to thank everyone for your continued thoughtfulness, support, love and prayers. 

Sunday

Rachel has a slight fever and has also been started on an antibiotic to treat her for a urinary tract infection.  She hasn't looked/felt like herself the past two days.  She walked only once, very briefly, yesterday.  Not sure whether she is going to feel like walking at all today. 

July 13th, 2011

Rachel walked 56 ft. today that is 16 ft more than yesterday. She is supposed to get up and walk again at around 1:30.

Rachel's fan club.

Respiratory Therapist- Assi, Physical Therapist - Diane, Nurses- Tricia and Christen and the star of the show our hero Rachel.

Rachel Walking July 11, 2011

Our hero walked twice today!!!!  Way to go Rachel we Are so Proud of you!!!

Monday 7/11/2011

Kind of an off day. She got up this morning and sat for an hour and did some leg exercises.  However since she has been back in the bed she has been nauseated. Not sure what from. So we may not make it up into the chair for a second time today, we will have to see how the nausea medication works.  Please pray the nausea passes and she isn't trying to come down with something.  

July 6th morning

We would like for all of you to please keep a friend of Rachel's from heart camp (Boggy Creek), Emily Warren, in your prayers for she was added to the heart transplant list this morning. Thank you all for your continued prayer for us.

Tuesday July 5th

The last two days have been boring and yet busy. Rachel has been sitting up two times a day for an hour at a time to build her strength up. She has been doing sprints on the ventilator (that is where she is doing most of the breathing work on her own.). She has been doing her IMT (breathing exercises to get her lungs stronger).  So as you can see while we are waiting we are working on making her good and strong in hopes it will help in her recovery.

Also Dr. Wallis on the transplant team says they are getting heart calls for her just the hearts have not been what they feel will be the best match for her. They are doing everything they can to keep her as a 1A status.  So please be in prayer with us that she can remain a 1a status, we get the call with the best heart to match her, and that while we wait we continue to be boring.

I do have to say God has blessed us with a great son. he may not be able to sit up in the hospital room very long but he has not complained once and he calls through out the day to check on her. He is becoming such a thoughtful,caring and loving young man.

Saturday afternoon

Another "boring" day so far today; let's hope it stays that way.  No fever, no infections, and chest x-ray looks good.  The doctors did tell us that chances for getting a heart actually increase during a holiday weekend.  We sure wouldn't mind if that held true.
She has been able to "sit-up" the last three days for about an hour at a time.  They are able to slide her from her bed onto another bed that converts into a chair.  She has already sat-up twice today for a total of two hours.  The doctors are pleased with how she is doing.

We know this might sound like a broken record but we again want to thank everyone for all that you have done for us.  Receiving cards, e-mails or visits sure lift our spirits.  And, certainly all of the prayers being lifted up on Rachel's behalf is encouraging as well.  Also, to those who have helped us out financially, we certainly appreciate your kindness and generosity.
Words can not express the gratitude we have in our hearts for everything that has been done for us.