Tuesday Afternoon 5/31/2011

She is now off the high flow nasal canular and now on the regular oxygen canular.  She has sat up for an hour this morning and we just took a small walk with about 3 breaks much to her dislike. It really took all her energy so she is now in the bed for a much needed nap. Over all she is doing well.

Monday morning

Did not post yesterday but Rachel was able to sit in a chair for the first time in about a week.  She sat up for about 45 minutes the first time and about an hour the second time.  The second time her and I ate some potato chips, had a drink and watched The Lion King together.  Later in the day, she ate some sour Skittles and looked like she felt okay for a change as she did not seem to be as sleepy or as tired.  All in all, a pretty good day.

Friday afternoon

Here is what we learned this afternoon regarding the heart transplant.  The process has started and over the next several days there will be a number of procedures/tests and evaluations to be done.  All of this is done to find out whether or not she is candidate for transplant.  The transplant coordinator told us that we should find out sometime late next week whether or not she is a candidate, and if so, that is when she is added to the list and the clock begins ticking to find a new heart.  That means that at any minute, once she is on the list, that we could get a call for the procedure to take place.
When I asked the coordinator about what happens if the procedures/tests and evaluations come back negative, she just said that "we won't go there."  She said that everything from this point on needs to be thought of on a positive side.
The surgeon has commented a couple of times that although a transplant sounds scary he would much rather put her through this process rather than another open-heart surgery that might not even improve her quality of life.  As he has said, she has never had a strong, normal heart and that her heart has always been abnormal and this could be the start of whole different life experience for her.

Friday morning

The doctors, in their rounds this morning, said that a transplant is still the best option.  During the meantime, they will up her dose of heart-function medication called Milrinone, and try and take her off of the breathing tube to see how she does on her own.  The surgeon said that they have had kids waiting for transplants that have responded to heart-function medication and have felt better while waiting for the transplant.  In these cases, the kids have been able to go home for awhile and then come back.  Right now, Rachel is still without a lot of energy so it will be interesting to see how she responds to the Milrinone.
Also, the surgeon said that the best thing for her, and us, while waiting is to be "bored and frustrated."  He explained that if everything is "boring and frustrating" then that means everything is easier on her and less procedures/tests/surgery while waiting for the transplant.  So pray for her and us to be "bored and frustrated."  If things aren't boring and frustrating then that means a more difficult time for her.  She could not respond to the Milirone and get any stronger in which case they may have to do surgery as a temporary fix which would complicate transplant procedures and test.  She could develop infections that could also complicate things too.  So if we are "bored and frustrated" while waiting, that is a really, really, really good thing.  We did tell the surgeon that we are experienced at being frustrated so we shouldn't have any problems with that.
Also, we are suppose to meet with someone, hopefully today, that will talk to us about the transplant.  Not sure when that will happen.

Posting Comments

I think we have fixed the issue with people trying to post comments to our blog and not being able to, if you were one of these people please try again and if you still have issues please let us know. You shouldn't need to register anymore (hopefully).

Thursday

After meeting briefly with the doctors this morning, the consensus is that a heart-transplant would be a better option for Rachel than trying to replace the aortic valve.  If they replaced the aortic valve, there is no guarantee that it would help the left ventricle to relax and the aortic valve would have to be replaced every two or three years anyway meaning more open heart surgeries.  This is not to mention that the pulmonary artery that he replaced five years ago with the gortex tube would also have to be replaced at some point as well as the pulmonary valve that he replaced during this last surgery.  The heart can only withstand so many surgeries and the doctors (and us) agreed that it is not fair to put her through multiple heart surgeries when she could benefit from a new heart. 
For right now, they are going to increase her heart-function medication to help her heart and try and remove the breathing tube either later today or tomorrow to see how she does on her own. 
We are suppose to meet with the surgeon and two cardiologists in charge of the transplant team either later today or tomorrow to get more information and what will transpire over the course of the next few days/weeks/months. 
We were told by one of the transplant cardiologist that they have to go through a series of tests in order to "get the ball rolling," which we hope to find out more about when we meet with all of the doctors.

Wednesday update

Rachel is back from the heart-cath and in her room.  This cath was more risky because of the arrityhmias that she has been having but fortunately she did not have any issues in the cath lab.  The cardiologist that did the cath lab did find what the surgeon and team of doctors suspected, that the aortic valve is leaking a lot, causing blood to back up into the left venticle thereby causing the left ventricle to not properly relax.
There are two issues that the surgeon and the team of cardiologists will have to address.  1.)  Whether to go ahead and replace the aortic valve, thereby meaning that she will have to undergo another major open-heart surgery and having to replace it every two/three years or perhaps whether she might need a heart transplant, and, 2.)  Replace and relocate the pacemaker b/c of the pacemaker lead needs to be replaced b/c it has worked itself loose. 
Also, the arrityhmia issue is of conern as well but it might be able to managed with medication. 
The surgeon and a whole team of cardiologists will be getting together in the morning to decide what is the best option at this point. 

Tuesday afternoon update

The heart-cath is scheduled for in the morning sometime between 10 a.m. and noon.  The purpose is more for information purposes to help the doctors try and figure out what is going on.  They seem to know for sure that the aortic valve is leaking but they want to find out how bad it is leaking.  Also, they believe the left-ventricle isn't relaxing enough to help the heart function properly.  Please pray for Rachel in the morning.

A word of thanks

We can't begin to express our thanks for all of the thoughts and prayers for Rachel and us during this time.  We have to thank our church family for the generous monetary donation, the care package from our Sunday school class, the cards and visits and to my co-workers for their thoughtfulness and kindness by way of the beautiful card and gift cards.  We are truly blessed to have so many people thinking of and praying for Rachel.  It really means a lot.  From the bottom of our hearts, thank you!

Tuesday morning

A little bit of good news for a change.  The bronchoscope from this morning showed that the antibiotics are working and that the infection/fungus in her trachea are healing nicely.  The doctor did find one little spot of blood and have sent it off for a culture and we are waiting on the results of that.  Overall, the trachea seems to be healing.
Also, waiting to hear from the cardiologist that will perform the heart-cath to see when he can do the procedure. He was wanting to wait and have clearance from the infectious disease doctors (as a result of the infection/fungus that was in the trachea) before he does the heart-cath.
Another thing is that they have sent away some blood work to check to see whether or not she may have pancreatitis, which may be causing her to feel nauseated.
So the plan for today is to let her rest as much as possible.  They had to sedate her for the bronchoscope and she is completely out of it for now.

Monday update

The team of doctors, including the surgeon, have agreed that another bronchoscope needs to be done to determine the status of the infection/fungus.  Also, the surgeon wants to have a heart-cath done so that he can see the total picture of what is going on.  He has said that she is not responding to what they are seeing when they do an Echocardiagram.  According the echo, she should not be having all of these problems.  He is also concerned about how much the leaking of the aortic valve is playing a part with the problems in the left-side of her heart.  That is why the echo will be useful.
Also, there seems to be a problem with the pacer-lead, connected to the outside of her heart, that he (surgeon) and the pacemaker doctor from Jacksonville, will need to look into.  However, the surgeon wants to have all of the information from the bronchoscope and the results of the heart-cath before he and the pacemaker doctors look into the pacer lead issue.
The heart-cath procedure might not take place until the end of the week or even the first part of next week. 

Sunday afternoon

Bad start to the day got worse.  Breathing tube had to be put back in. 

Sunday morning

Rachel had another tough start to the morning again this morning.  She got sick and was unable to keep anything down.  She seems to have gotten it out of her system for now and is resting and appears to be a little better.
The doctors/nurses agreed to give her stomach a break and turn off the feeds for now.  Not sure if that has anything to do with why she is waking up sick or not but they felt she needed a break from it for a while.
Also, going to start her another antibiotic just in case there is some type of infection in order to try and head it off in case there is an infection of some kind. 
About the only positive thing is that we have had the best nurse, in our mind anyway, taking care of her the last few days.  Ms. Paula truly exemplifies what a nurse is.  She is just amazing.

Saturday morning

Rachel seems to have taken a step back from just a few days ago when she seemed to be getting better.  She is not eating anything on her own (she is getting fed through the feeding tube) and we are having to force her to drink so she doesn't become dehydrated.  She is setting up in the chair several hours at a time and has been walking some but for the most part, she wants to lay in the bed, as she appears to be really tired.
The surgeon has said that he believes that getting her caught up on her nutrition will help give her some energy and will help her to get better, but, he is also concerned about her poor heart-function as a contributing factor, which they have to figure out how to make it better, whether that is with or without medication.
Also, he is aware that she has always had a leaking aortic valve and it appears that it is leaking more and he is wondering how much that is playing a part in the poor heart-function too.  He has said that he does not want to do another surgery, especially this soon from her last surgery, so he and the team of doctors treating her, have to figure out a way to get around the leaking from the aortic valve, if that is what is playing a part in all of this.
Also, he wants to have the pacemaker checked again to see whether the pacemaker settings could help somewhat, although he is rather sure that it is not a pacemaker issue.  He was quick to remind us that they are still treating her for infection/fungus in the trachea, having to monitor her thyroid since the anti-arrithymia meds can have an effect on the thyroid, getting her nutrition built back up and the fact that its only been three weeks since major open-heart surgery.  So there are a number of issues they are having to look at.

Friday morning

The plan for today is to have Rachel sit-up as much as possible and walk around even more.  She did not eat much on her own yesterday nor did she drink much, which is beginning to become of some concern, the not drinking part b/c of the threat of dehydration, so the doctors are monitoring it.  She did sleep pretty good last night, which is a good thing.   So, for now they will continue with what they've been doing, the same meds--monitoring blood work and thyroid-- and continue to monitor her.  She looks like she feels better as she isn't as whiny as she had been about every little thing but she still doesn't have a lot of energy. 
Also, as favor for us, please pray for all the children and their families here in the PICU.  We are quickly reminded that although we think we have it bad, there are children and families who have it worse. 

Thursday afternoon

Pretty decent day today although not quite as productive as yesterday.  She sat-up a couple of times for a long time and walked around again, this time a little farther than yesterday, but, she hasn't seemed like she felt as spunky as she did yesterday.  Some of it might be due to her not sleeping well last night b/c of having to get up and go to the bathroom so many times due to the Lasix.  Also, she has eaten much at all today but she is getting nutrition through the feeding tube from around 8:00 p.m. til 8:00 a.m., so she is getting fed.
The surgeon wants her to get her nutrition built up, be able to walk around a little more without tiring out, before he feels comfortable letting her go.  So, we initially thought maybe she might be discharged over the weekend, perhaps Sunday, but he (surgeon) said he will probably be the first of the week.  Hopefully.
Also, a little low-grade fever is back.

Wednesday night update

Overall, Rachel had her best day since being re-admitted last Tuesday evening.  She sat-up for most of the day, walked around the unit a little, and she actually ate two dinner rolls, two Chips Ahoy cookies, drank two pints of milk, had a bit or two of Raisin Bran cereal and two bits of a bagel with cream cheese and of course, sweet tea. The doctors seem to believe that if they can get her nutrition built up that will help tremendously with the heart function and help her overall.  She looked and acted the best that she has since being re-admitted.  The doctors want her to be fed by a feeding tube during the night to add to the nutrition.  Finally, maybe a light at the end of the tunnel.

Wednesday morning

Here is what we learned late last evening.  Basically, Rachel hass poor heart function right now.  The right side has always been rather weak but the function has been compensated by the left side which has always been pretty good.  Now, due to the stress of surgery, the left side is also weak makng the total heart function poor.
Yesterday, during the rounds, the critical care doctors decided the re-start her on a medication called Enalpril, to help the heart function.  She had been on this med before surgery but since surgery, the surgeon took her off of it, due to it lowering the diastolic pressure in her blood pressure.  The thought about re-starting the med was that it would help make her heart not have to work as hard.  But during his rounds yesterday evening, the surgeon wanted her off of it b/c it was lowering the diastolic reading in her blood pressure.  He said that if the diastolic pressure got to low, it would then cause major problems, so he discontinued it.
So now the dilema is what to do for the heart function.  Most of the meds that can be given for heart function cause the blood pressure to drop but at the same time, something has to be done to help her heart function to make her feel better overall.  So for now, all the doctors have to get together to figure out what to do next.
Also, the surgeon's assistant said that the infection/fungus that developed in her airway could be causing her body to work even harder to try and beat back the infection/fungus and that it can't devote itself all to the heart. 
Very frustrating having to wait while they try and figure out how to solve the problem.  We know in time that they will get it fugured out but of course, we want it fixed now.

Tuesday afternoon

Rachel has sat-up in the chair three times today for a total of about 3 1/2 hours.  She has eaten just a tiny bit but this is progress.  The doctors had stopped one of her heart medications, Enalapril, for heart function right after surgery b/c it was lowering the diastolic pressure in her blood pressure.  However, since they've stopped that particular med, she has not been the same.  So, this morning, they started her back on it, at a lower dose, to see if that will help with the heart function aspect of it.  And, some good news is that she actually slept really good last night for the first time in a long while, which she really needed.  Making progress a little at a time.

Monday update

The feeding tube came out today as did the catherer.  She sat up in the chair, two times, one time for an hour and a half and the second time for about an hour.  According to the doctors, the new anti-arrithymia med seems to be doing what its suppose to be doing and the antibiotics seem to be working against the infection/fungus that had developed in the airways.  Overall, a pretty good day.

Sunday

Breathing tube out again as of about 5:00 p.m. today.  She coughed up only a small amount of blood all day and "all the numbers" (its always about the "numbers") looked good, plus when they listened to herm she didn't have a rattle sound to her and the last chest x-ray looked good as well.  The prayer request is that she will be able to maintain on her own, cough and take deep breaths.  One of the issues facing the doctor was whether to leave it in another night, in which case the better chance to continue to irritate the infection, or take a chance that she can maintain her own and take it out.  All of the doctors agreed to move ahead and take it out.  The good news is that she claims that she is hungry.

Friday update

Rachel coughed up blood in the breathing tube yesterday morning and then again last evening.  A bronchoscope was done and found that the blood is the result of bacteria infection and fungus in the airway.  They have started her on an antibiotic to treat the infection and fungus.  So, the doctors were hopeful of taking out the breathing tube some time today but now it will be several more days so that they can treat the infection/fungus.  Also, while they were doing the brochoscope, she had a seizure, which they believe may have resulted from the sedation that was given to her.  Still waiting for them to start the new medication to help prevent the arrithymias.  Very, very frustrating day.

Wednesday afternoon/evening

They had to put the breathing tube back in around 5:00 p.m. today.  She had gotten to a point where she was fighting and struggling to take deep breaths and was unable to muster much of a cough.  She seemed to be getting worse throughout the day and it just reached a point where the doctors decided she needed the breathing tibe again.  At one point, the surgeon (Dr. Bleiweis), the head of Pediatric Cardiology (Dr. Fricker) and the EP doctor (Dr. Bryant, Pacemaker doctor) were all in here checking everything out.  The medication that they started her off on for the arriythimias seemed to be causing a lot of issues so they have stopped giving her that particular med and when its completely out of her system, probably around Friday, they will start her on another med to help prevent the arriythmias.  Also, she dos have fluid building up once again and in addition to the breathing tube, they have also put in an art-line and a central line.  So, basically she looks about what she looked like after surgery.  Looks like a long road ahead.

Back at Shands

We are back in the PICU at Shands after being home for two days.  It appears that she is not peeing out enough and isn't drinking or eating.  They have started her on IV fluids and will be giving her a new medication to prevent arrithiymas which might have led to the episode last Friday where she had what we thought was a seizure but may have been caused by her pacemaker kicking in instead.

Late Friday

Rachel had a seizure around 3:30 p.m. yesterday (Friday).  The doctors/nurses had forgotten to give her her anti-seizure medication the whole time she has been here.  Plus, she has not sleep hardly at all over the last three nights so they believe not having the med and not sleeping well might have triggered her first seizure in five years. The doctors/nurses were saying before then that we would probably be discharged sometime today (Saturday) and we still might, but, they will probably want to hold us over one more day.

Mobile!!!

Rachel with Dr. Moran

Actually EATING real food!!

Beauty and the Beast

Mom getting some sugar

Getting up to walk for the first time (Thursday night)

Walking with her night nurse, Josh

Rachel and her surgeon, the incredible Dr. Bleiweis

WooHooooo

Today  (Thursday) has been a great day!  They took the feeding tube out as she has actually been drinking and EATING!!! Yes, she actually ate several bites of chicken tenders, mashed potatoes with gravy and mac and cheese, plus her sweet tea.  For dinner, she ate some french fries.  Also, they are planning on having her get up and walk this evening!!!   The surgeon's assistant has said that they would like to try and let her go home sometime Saturday!    We will post some pics of her eating and walking a little later on.  Praise the Lord for the progress today.

Rachel Sitting up!!

Rachel with Jen to the left who is taking care of her today  and Ms. Junewho took care of her right after surgery. 

AHHHHH!!!! Popsicle finally!

Wednesday morning update

Breathing tube is out as of 9:00 a.m. and they put her on the Bi-Pap machine as soon  as they took the breathing tube out.  Now, they are going to take her off of the Bi-Pap and just go with the nasal canular (the nose thingy) and let her sit-up in a chair for awhile.  She will also finally get to drink a little bit of water as she has been asking for something to drink for several days now.  She even made up a list of things she wants to drink and a list of things she wants to eat.  Also, they will take the catherer out this morning as well.  The goal for today is to sit-up as much as possible.
Every time we are here in the PICU, we are reminded how special the nurses are  in this unit.  One of the nurses that took care of her the first couple of days after surgery bought her in a bottle of nail polish and the nurse she has today took care of her two days ago and she was off yesterday.  She told the charge nurse this morning that she wanted to take care of Rachel.  Thank God for wonderful, compassionate nurses like the ones here in the PICU.

Tuesday afternoon

Hopefully, the breathing tube will come out tomorrow morning.  The doctor has said that the chest x-ray is showing improvement and when they listen to her, she sounds better.  She actually wants to get up and walk around a little bit and "drink sweet tea until she is dead."  Her words.  The fever has come down some and overall, she seems to be feeling a little better.

A little progress

Finally, some pretty good news.  They have decided to remove all three of the chest tubes!  They believe that this will allow her to breath more deeply and she will definitely rest more comfortably without big 'ol garden hose type tubes coning out of her abdomen area.  Also, the surgeon is encouraged hy the progess being made with the breathing tube and he believes they can "lower the numbers" on the ventillator.  He also said that he almost certain that the fever is due to inflammation.  And finally, the best news is that she has said, or written down on a piece of paper, that SHE IS HUNGERY!!!!  Can you believe it???  Currently, she is getting her nutrition (Pedia-Sure) by an IV but she wants to eat something.  When I asked her what she wantedm she said a Hardee's ThickBurger combo meal......wait a minute, that was me.  She wants a popsicle and sweet ttea.

Monday morning update

The last chest x-ray (from 4:00 a.m.) showed some improvement in the upper portion of the lungs, however, the bottom portion is still really wet.  So the plan is to add another diuretic to help draw some of the fluid off and have her sit straight up in the bed as much as possible.  The fever has come down a little.  The breathing tube will stay in today although they are shooting to pull out the chest tubes as soon as possible.  Another problem is that she is very restless (I can't imagine why) and she has not had a really good night of sleep.......along with mom and dad.

Sunday afternoon

Rachel has had a fever (102) all day today and despite having had the breathing tube put back in late last night, the latest chest x-ray (done @ 4:00 a.m.) still showed a considerable amount of fluid build-up.  The surgeon did not think that it was cardiac related but more lung related, however, earlier today he said he couldn't necessarily rule out that it still might be cardiac related.  Waiting on blood/urine/and sputum cultures to come back to see whether the fever is due to an infection of some kind.