Prayer Update on Tiffany

Dear Family and Friends,

We are through another day rejoicing in the grace of Christ Jesus our Lord. I am so thankful that we do not have to go through this on our own but that we have a God who is in control, strengthens, and gives peace. What a blessing it has been to hear from so many people!  Tiffany had fun last night reading emails, blog posts, and looking at all the facebook posts.  Thank you for continuing to encourage her!

Yesterday actually went much better than we had thought that it would go, and we have avoided the ventilator which is a huge blessing. Her numbers held steady throughout the day, and we saw some improvement with her breathing although it is now harder for her to breathe without the BIPAP. She has done well seeing that they did not start the new IV treatment plan till yesterday afternoon so the next couple days will be critical in seeing how her body responds. She slept well last night for which we are very thankful! Today will basically be just continuing the IV treatment and continuing with her respiratory treatments.  They may also take out her PIC line due to the MRSA infection which means they would adminster the drugs through perefiral 

It has been an amazing thing to watch someone in such difficult health situation simply be content with God's plan for her life. Early this morning we were talking after one of her treatments and this is what she told me -- "Hope in God." We have a confident expectation in what God is doing in her life and our life together.  Our Hope is not in a Dr. or even in her ability to fight this infection -- it is simply in the King of kings. What a great God we serve and what a blessing to watch Tiffany hope in God and then encourage me to Hope in God.  So I pass it on to you -- whether it is with Tiffany or your own life situations -- Hope in God!

Here is how you can pray today -- 

1. If they take her PIC line that her veins would handle the IV drugs through the peripheral IVs. This would help her body be able to fight the infections for a couple days and then put in another central line.

2. That God would give her body strength to fight the infections as the drugs start working

3. That we would be strengthened in the grace of Christ Jesus our Lord

4. That God would give family a sweet time of fellowship and mutual encouragement

5. That God would use Tiffany's testimony to the medical staff and others

Here is how you can praise God with us today --

1. Good sleep last night.

2. She has been able to continue eating

3. She is not on the ventilator

4. That we have a God we can place our hope in

Once again, I can't express my gratitude enough for the outpouring of love and support. We serve a great God!

Hoping in our God,

David and Tiffany Brock

Prayer Update for Tiffany

Dear Family and Friends,

We would covet your prayers at this time.  Last night about 2 a.m. we made the decision to have Tiffany taken to ICU because her breathing worsened and the infection in her blood has come back.  The present theory is that the MRSA in her lungs is reinfecting her blood with MRSA which then takes a toll on her body and makes breathing very hard.  The decision to go to the ICU was initially made as a proactive cautious choice but as the day has progressed it has proven to be a good decision as things have worsened. She is breathing with the assistance of a B-pap machine which helps with the inhaling and exhaling. At this point she seems to be responding well to that extra help.  This afternoon we will see how she is doing but the next step is to put her on a ventilator. The reality is that the prognosis is not good if she goes on the ventilator due to the major infections.  They have started her on a cocktail of antibiotics to address all of the infections.  We should know in the next 24 hours how her body is going to respond to these treatments. As I write this, she is resting quietly.

Tiffany is actually doing pretty good emotionally. She is content with God's design for her life. We are simply resting in God and His perfect plan. Please pray that God would accomplish His plan in our life.

Here are some specifics you can pray for -- 

1. That her body would respond to the drugs positively and we could avoid the ventilator.

2. That we would be strengthened in the grace of Christ Jesus our Lord

3. That God would give safety to family who are traveling in.

4. That we would have the peace of God.

5. That God would accomplish His perfect plan.

Here are some things to praise God for --

1. The decision to come to ICU was made at a non crisis time which is enabling better care today

2. Tiffany's Mom stayed here after she and her husband visited for Thanksgiving

3. That God is God and we are not!

Thank you for all of your love and support. 

David and Tiffany Brock

Tiffany Hospital update 11-27 by DH

As many of you CFers out there know -- hospital stays can be hard and drawn out much longer than you would like.  I think that is true of this one. We were not anticipating being here this long but I guess we must simply rest in God's timing in it all.  Her lung functions were down to 22% which is a drop from when she went in to the hospital. We have yet to get her transplant evaluation process rescheduled.  They told me they couldn't tell me till Dec. 8th when it would be scheduled, but I am not sure why -- I will probably write them and find out. The hard part now is patience because just when you feel like you made significant process your body doesn't cooperate. This is definitely a weird hospital stay that we are looking forward to be over. Below is an email that I sent out to family and friends today by way of update. I am going to try and post more often -- but you know how it goes in the hospital. DH

Dear Family and Friends,

As Thanksgiving has come and gone as an official holiday there is still much to be thankful for as we move forward. We were not able to go home for Thanksgiving, but I am thankful that Tiffany’s parents were able to come down for the week and to celebrate with us at the hospital.  A family in our church provided us with a meal and we feasted in the hospital room even with enough left overs to have a turkey sandwich for dinner.  God continues to give His grace in supplying strength, patience, and hope (confident expectation in God). 

It has been an interesting week and a half since the last time I wrote.  It seems that so much but yet so little has happened. Tiffany continues to make slow progress with some of the issues that I mentioned last time but especially with the C-Dif colitis.  We were hoping to go home by Thanksgiving but Tiffany’s body is still fighting so much that she has not regained the strength or lung function that is needed in order to go home.  It has been a hospital stay with so many ups and downs.  Just when we think it is getting significantly better, something else comes up. They have been very careful to watch for other infections and to this point we have not found any. It is evident that her body is still fighting infections that we assume to be the existing MRSA, C-dif, and pseudomonus because of the fluctuation of her white blood cell count and some fevers.  They did another lung function test earlier this week, and it has gone down since she has been in the hospital.  That is not surprising seeing all that her body is fighting, but we would like to see a turn around soon in her lung functions. 

Here are some praises -- 

1. No new infections have been found
2. We have received great medical care
3. Tiffany’s parents came for the Thanksgiving week
4. Tiffany’s mom is staying here helping for the next couple of weeks
5. opportunities for spiritual conversations

Here is how you can pray -- 

1. The infections be continued to be killed off
2. Increase in lung function
3. Re-scheduling of her transplant evaluation (we won’t find out till December 8th if we are able to do it in early January)
4. Tiffany’s body be strengthened 
5. Patience through the slow process

Thank you for all of your prayers and notes of encouragement. We continue to be amazed at the support that we receive from so many. You may be asking when will Tiffany get out of the hospital -- the answer is simply that we do not know. We are simply taking a day at a time, and when the time comes for her to go home, we will be grateful.

Trusting in our God,

David Brock

Friday's Review

Finally, a quiet day.  Tiffany has spent most of the day sleeping -- her nurse has been great and has kept people out and grouped all of his things together to allow Tiffany maximum sleeping time. Last night was a short night with many interruptions so sleep today was greatly needed. A quiet day in the hospital is a good day which usually means no new problems and no new treatments and that is basically the case for us today. They are adding one IV drug to her regimen to help address the colitis but that is all.

It was neat today to run into a couple of the folks who helped take care of Tiffany the last hospital stay. The lady who cleaned her room last time came by to visit and then I talked with a nurse aide in the hallway for awhile. Tiffany sure does make an impact on the people with whom she interacts!

Below is another letter that I wrote to friends and family giving them an update on where Tiffany is with her health.  It should give you an idea of exactly where she is -- I had meant to post it earlier but alas it did not happen. Looking forward to a quiet and uneventful weekend. DH

Dear Family and Friends

Well, what a week it has been! Tiffany has proven to keep the doctors guessing with plenty of theories and not much success at knowing exactly what is happening until the last couple days and even then some things we don’t know. Initially when we came in it was for things going on with her abdomen, hands/feet, and throat with some difficulty with breathing and a fever. At first they thought that it was all connected but now it appears that it is not connected and they found more issues in the testing process. In the past week I think Tiffany has had more tests than what she would care to go through again but that is all part of the process when you are not sure what is going on with your body. I think the most doctors we had in one day was 8 and most days we see 5-7 of them.  Yesterday, we had 5 all in the room at the same time. So the short of it is that Tiffany has . . .

1. C-Diff and Colitis (explains the abdomen problem) which is easily treated with antibiotics although it has progressed quite a ways
2. Perhaps candida in her throat (We have yet to get the final test results, but this is what they are treating)
3. Toxin release in her hands and feet from probably all the drugs she has been on over the year (this is simply a theory as they don’t know for sure what it is -- it is the same symptoms as reaction to chemotherapy which she hasn’t had last time I checked)
4. The new one that we were not anticipating is that she has MRSA in her blood. This complicates everything because MRSA likes to go to foreign objects and grow on them and then they go to the heart.  She had a TEE (this is where you swallow a camera and they look at the heart from the inside) on Sunday which ruled out MRSA colony on her heart valves. What it does mean though is that her port has to come out which is a big bummer.  She will then go through the treatment process over four weeks and then hopefully get another port put back in when her blood is clear of the MRSA. They will remove it Thursday.
5. Her breathing has become more difficult and her oxygen has had to be increased. They believe this is a result of the stress that her body is under as her lungs “sound” good.

The good news now is that we have a treatment plan and we are currently staying with that plan.  Last week it seemed like they were changing directions every day and had a new thought of what the problems may be.  One of the blessings in all of this is that we were able to catch the MRSA in the blood early on.  This actually can be a very serious problem and she wasn’t even showing signs of it when we came in to the hospital. God is good and is working in ways that we do not know!

Thank you for your continued prayer. If you would like, you can send a note to Tiffany and I know that would be an encouragement to her. Here is how you can specifically pray now.

1. That the treatment plan would continue to bring healing.
2. That we can get the MRSA totally out of the blood.
3. That we would be able to reschedule at UCLA for a reasonable time (looking for the beginning of January)
4. That we could get out of the hospital before Thanksgiving (possible but probably not likely at this point but God can intervene!)
5. The Lord is opening some doors of conversations with some of the medical staff -- pray that God would use us in their lives and that they would turn to the Great Healer

Thank you again for your love, support, and prayer.

Trusting in His Grace,
David and Tiffany Brock

Transplant Possibility

Tiffany is now without a port.  Everything went well with taking the port out this afternoon and now Tiffany is having a blood transfusion because her red blood cells were low. We are hoping now for a  quiet couple of days with extra sleep.  Below is a letter that we sent out to some family and friends a couple weeks ago and that we were going to post earlier before all this excitement. Here it is finally.

Dear Family and Friends

It has now been around six weeks since Tiffany got out of the hospital. It has been so nice to be at home and to be enjoying the new hardwood floors that many gave to and many gave of their time to install. It really has been a blessing while eliminating many of the asthma issues. We serve a great God who continues to supply our needs.  Thank you for all of your prayer support these last couple of months.

  

This last year has been a pretty difficult one for Tiffany with constant infections and not being able to stay off of I.V.'s for much more than a month at a time. This last hospital stay in August and September was a harder one because of the length and because of how low her lung functions reached.  While in the hospital we were able to have a number of good conversations with her Dr. and some since with the CF nurse. The Dr. encouraged us to start thinking about a double lung transplant.  With the frequency of infection and the duration of healing, we have reached that point. The last six weeks of being home has been a time of much prayer and research as we look at all of the issues with lung transplants.   

I know that we have many questions -- some we have found answers to and some we continue to learn about but the following are just some questions and answers that may better help you understand and pray.

How do you know when it is time to look at transplants? Basically when the infections become much more frequent and the duration of recovery continues to increase combined with a decreased lung function to below 50% -- kinda sounds like the last year. When the lungs have a hard time doing their job.

What are the survival rates of transplants -- 80% make it through the first year and 50% are living five years later

Will Tiffany still have CF? Yes, but she will not have lungs with CF so the treatment is much different.  She would still have the digestive, sinus, and diabetes issues because CF is genetic and affects more than just the lungs.  In fact, we would really have to stay on top of the sinus issues as that can be a source of infection with the new lungs. Because the lungs don't have CF, all the breathing treatments, poundings, and such would no longer be needed -- I essentially lose my excuse to beat my wife. :)  The reality is that she is exchanging one set of problems for another because once she has the transplant she will be on medicine that suppresses her immune system to keep her body from rejecting the new lungs.  

What is the process of getting a transplant? The first step is our research and making sure this is a direction we want to go. We have done quite a bit of research and spent much time in prayer and believe this the right course of action for Tiffany. Secondly, you have to choose a transplant center.  We have decided on UCLA in Southern California to start the process.  We have an appointment with them Nov. 15-17 when we will run tests and have many meetings. They give you a LAS (lung allocation score) that determines how high of a priority you are for receiving a transplant.  It considers many factors from the tests, to support, to long-term viability and other such issues.  The higher the number the greater the likelihood of receiving lungs. After they do all that testing, we will then find out if Tiffany will be accepted into their program and if she will be listed now or need to wait. If listed, you then wait for the phone call, and when they call, you drop everything and go. If she is not accepted into the program at UCLA then we will look at other centers.

What is the recovery time? This is largely dependent on how your body reacts to the new lungs-usually about 3 months that they want you to stay near the transplant center.

What will happen if Tiffany doesn’t get a lung transplant? The reality is that her lungs are getting worse and that the infections are taking more and more out of her. The end result is that she would eventually get an infection that her body cannot fight off. No one can say how long her lungs would last but once your body is weakened it is very easy for it to drop quickly. The Dr. has not given any type of time factor of how long she could live without a transplant as you just don’t know what infections may come.  The reason we are looking at transplants though is the reality that that time is approaching. Hard to work through but yet a reality.

So what is the next step? The next step is establishing a relationship with a center and starting the process of evaluation and getting listed.  We are wanting to be connected to a center right away.  They may say that she is still not ready for a transplant but it is much better to have an existing relationship with a center that is watching her as she could take a down turn any time. We are scheduled to meet with UCLA Nov. 15-17. If she is accepted and listed, then we simply wait for the call. 

How long will she be on the waiting list? There is no definitive answer on that. The factors included would be her LAS, blood type, body size comparison, lungs being available, and many other factors. It could happen very quickly or it could take a couple years. We have many questions to ask in this area at the appointment.

I write you all of this so that you can come along side of us and pray.  There is still much to learn and we are confident that God is in control.  Here are some specific ways to pray.

1. Pray that God gives us the emotional and spiritual strength to make wise decisions.
2. God can use this in the lives of others. 
3. Tiffany be accepted into the UCLA transplant program.
4. The appointment would go well and we would be able to learn more
5. God would accomplish His will in our lives.
6. God will be in and through all of the big and little details.
7. Be able to maintain Tiffany’s health that will allow all of the traveling and the transplant

Thank you for your continued love and support. 

Resting in His grace,

David and Tiffany Brock

update: Tiffany was not able to make the UCLA appointment although we are working at rescheduling it.

Tiffany Update

Ok. So we know it has been a long time since anything has been posted and a lot has happened since Tiffany last posted.  This will just be a quick post and then I will come back with some other posts that are actually emails that we have sent to family and friends over the last couple of weeks and that will get everyone caught up on where we are.

As I am writing this, I am sitting in the hospital where Tiffany has been for the last 10 days. We have a PICC nurse here putting in a PICC line as her port is coming out this afternoon.  We went in to the hospital last week because of a number of issues but while she was here, MRSA was discovered in her blood so she is currently being treated for that.  MRSA loves foreign objects so they are taking her port out as a precaution.

We are not totally sure how long she will be here, but we are hoping to be home for Thanksgiving.

Well, the PICC line is now in -- I will post again later.  DH