Two quick prayer requests and an update
28. June 2008
Michael
Hey Guys
I have a quick update. Mandy is doing ok, but is still having difficulty tolerating her feeds. The doctors have slowed them way down, trying to get them under control. They will increase them as she is able to tolerate them. They are also making some adjustments to her medication, especially her thyroid, which appears to have been over-producing. The good news is that they do not think it has anything to do with her heart. So Praise God for that.
The bad news is I might be coming down with something, so naturally I will stay away, and continue to get updates by phone.
Please pray for both Mandy and I for healing, and wisdom for the Doctors and other health professionals.
Love in Christ
Michael and Teresa Blaes
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Weight Loss Issues and a Question
28. June 2008
Michael
Hey Guys,
I have a major update. It feels kind of weird writing this after my update yesterday, but I promised you that any time that things changed, I would let you know. Mandy was doing ok, but Teresa had noticed that she seemed thinner. She could feel her ribs. So I asked the nurse what her weight was, I was told about 7.3 pounds. I freaked, because the last weight I had on her was around 10 pounds which was taken on Mother’s day. She has lost a significant amount of her body weight. We had an appointment with her cardiac doctor yesterday. It was supposed just a routine follow-up. But then again with Mandy, when is anything routine?
Anyway, her doctor took one look at her, and commented on her loss of weight. He was very concerned and immediately took steps to address the problem. Things began to move very quickly, and the next thing we know, she is admitted to the hospital.
So that is where she is now. They will be doing a bunch of tests, and taking a hard look at her nutrition to get her to gain weight. I don’t know how long she is going to be there, but it feels like a major setback.
Teresa and I went home to get some rest. We got home after 4:00pm and slept until 2:00 am or so. We called to check on Mandy who is doing ok for the most part. They are having some difficulty adjusting her feeds. She threw up a couple of times. I’m sure that it will get worked out.
This raises several issues for us. First is the all-dreaded Transportation problem. I met with an advisor, and found out we will probably not qualify for the state insurance which was helping with some transport. We supposedly make too much money. Mandy will probably qualify for a couple of other programs because her medical issues, but Teresa and I are back to strictly having Medicare, which will only cover 80%, and will not help with any transport. I realize that 20% may not seem like much, but it adds up very quickly. We will be doing some research to try to secure some more insurance for us.
Frankly I’m frustrated. Neither Teresa nor I are in any condition to work outside the house. We have been working our business plan, which is coming together very slowly. I know that God will not let us down. It just weighs on me heavily.
The scripture that says look well to the ways of your household keeps popping into my head.
Please pray for the weight loss issue, and discernment and wisdom for the doctors.Also please pray for us for strength to endure and wisdom, along with the finances we need.
Love in Christ
Michael and Teresa Blaes
PS. Teresa and I are considering adding something to the website, and we wanted to get your opinion. How would you feel about us offering coffee mugs, t-shirts etc to promote Mandy’s Story? Please share your thoughts by clicking the comment link below.
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Teething and Training
26. June 2008
Michael
Hey Guys,
I know it’s been a while since I’ve made a post. My intention was to post when I had updates, but I realize now that we need to update everyone more regularly. So I will do my best to update the website at least once a week.
So here is what has been going on for the last couple of weeks.
I completed all of the insurance and long term care paperwork. These have been submitted, and we are now waiting for everything to move forward. We are still having some transportation problems, and because of a miscommunication, we have not have been able to see Mandy nearly as often as we wanted and needed to. We have completed the training for the medical side except for her medications. Now we are just waiting to complete the respiratory part. So far we have been signed off on suctioning and trach care. Now we need to do trach replacement, ambu-bag, and CPR. These have to be completed before Mandy can come home. So that is the next step.
We did get to see Mandy today, and she is doing really well. I think she is starting to teethe though. Both Teresa and I held her for a little bit, and it was a really special moment. She calmed down and just laid there and looked up at us. She especially likes to suck on my finger. I’m not going to be able to do that much more. Her jaw is really strong, and once she gets her teeth in, I might just lose a finger.
We have several Doctor’s Appointments coming up and we will keep everyone updated as things develop. Please continue to keep us in prayer. We are still struggling financially, although we are getting some debt paid off. We have some major decisions coming up regarding the long term of Mandy. Please pray for us for wisdom and guidance.
Love in Christ,
Michael and Teresa Blaes
PS. Please share your thoughts by clicking the comment link below. These have been a great encouragement to us.
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Mandy’s Good News!
8. June 2008
Michael
Hey Guys;
Mandy is doing really well. We had a care management meeting Thursday, and got some updates.
All I have to say about this one is Praise God!!!! The MRSA is gone! They have stopped requiring us to wear gowns while holding her. She is up to 9.9 Pounds now. She continues to grow like a little weed. She is becoming more and more like a “normal” kid. I say that with tears in my eyes thinking about all we have been through. 2 heart surgeries, the times she coded. The months and months and months of her being in the hospital. It has been an adventure. I give all the glory to God, not only for Mandy’s healing, but also for his support of us. One of my favorite scriptures comes to mind….
“Come to me, all of you who are weary and loaded down with burdens, and I will give you rest. Matt 11:28 (ISV)
One of the biggest things that I have learned through this trial is that my strength and my answers have to come from the Lord my God who is my ever present help in time of trouble. He is all knowing, all powerful. He knows what I need even before I ask. Those words are not just clichés or meaningless words from an ancient dead book. Instead they come from his relevant living word.
When we need finances, he brings them, when we need peace it comes, when we need healing that comes as well. All of our provision comes from him, even when we blow it.
I am dealing with a situation that is entirely my fault. We are having some issues with our insurance. We were supposed to have a review, and I completely spaced it. So now I have to fill out paperwork, and reapply. Please pray that God will give us the grace and favor we need to get things reinstated quickly as it affects everything involved with Mandy’s care. Fortunately I found out that once it is reinstated it will retroactively pick up the tab. So we will not end up with a whole bunch of bills.
One of the biggest problems it caused is with our transportation. The insurance was paying for us to go to the facility to train. The facility’s administrators are doing everything they can to help us, and have agreed to provide some transportation. So I praise God for that as well.
It is absolutely critical that we are able to get there regularly as scheduled, as well as getting our insurance situation dealt with, because we are about 5 weeks away from Mandy coming home!
Thank you for all your prayers. Believe me God is hearing and answering them. Please share your thoughts by clicking the comments link below.
Love in Christ
Michael and Teresa Blaes
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Mandy’s Been Transferred!
4. May 2008
Michael
Hey Guys,
I have a quick update.
Mandy is doing really well. She was transferred to the long-term care facility on Thursday. We spent some time there Saturday. It is a very nice place. Mandy has a private room, and the staff are great.
There are a couple of points of frustration though.
The first is she is still fighting off the MRSA, which absolutely sucks. This is a condition that we are going to have to deal with for a while. Hopefully she will develop the immunities she needs to combat this. The problem is with a trach and a G-Tube; they will cause bacteria to grow. You have to remember that when you bypass one of the body’s natural defense systems, which in this case is the nose and mouth, the bacteria has a direct in to the lungs. That’s why anytime you have anything to with the Trach, you have to be sterile. I have no problem with this.
My concern is that the doctor told us that we should wear gloves all the time when we handle her. I’m sorry but I absolutely hate the idea of the only feel my daughter has of me being through a rubber glove. In that case we might as well just put her in a bubble, which I refuse to do.
We have been practicing good hand-washing techniques from the beginning, which is what they told us to do. Now they want us gowned and gloved.
I’m really wondering how we are going to be able to care for her at home, when we have to take such extreme measures while handling her.
I really want to know how she contracted it in the first place, but apparently it is becoming a real problem in hospitals. I find this very ironic, because of all the measures that they use to keep things sterile.
I know God has a reason for this, and I am not going to just throw up my hands in defeat. I also know that he can take care of this antibiotic resistant bacterium. I just needed to express my frustration.
Here’s another area where we need God’s intervention. It’s a good thing that He doesn’t get tired of answering our prayers. I know he does.
Thanks for all the prayers
Love in Christ,
Michael and Teresa Blaes
PS. Please share your thoughts by clicking the comment link below. Thanks!
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The Battle Continues
26. April 2008
Michael
Hello Everyone
Just a quick update; Mandy is doing ok. She is still at the hospital. The doctors are waiting for the all of the testing results to come in. Apparently they actually have to collect samples and let them grow for a period of time to see if there is any kind of bacteria in there. They then should be able to identify what kind it is. They have already started her on antibiotics, so they should have a head start. They also did an MRI, but are still waiting for the official results.
Once these tests are complete, we will have a better idea of what kind of bug she is fighting. She is definitely fighting something. She was running a fever during the day shift. So that’s where we are at this point.
Teresa and I have learned a lot during this process about waiting on the Lord. With all of the different things that we have been through, we stopped asking the question, “when? “and started asking instead “What’s next?” How similar to our Christian walk. God doesn’t operate in our time. Instead he has his time frame. When we give up our preconceived notions about how long something should take and instead start trusting God and waiting on him to act, then it’s amazing how things start to work out. We cannot drop our guard though. Like Jesus said watch and pray that you do not enter into temptation. We must continue watching and waiting for our Lord to achieve victory for us. Another scripture that deals with this Is come to me ye who are heavy laden, and I will give you rest. But that rest starts with trust. Trusting him that everything is going to be ok, and that he will work everything out for our good.
Thank You again for all of the prayers. God is answering them. Have no doubt of that.
Love in Christ
Michael and Teresa Blaes
PS. Please feel free to share your thoughts by clicking the comment link below, even if you disagree with me. We would love to hear your insight and experiences.
PPS. If you have any prayer requests, please leave these as well.
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A Small Setback
23. April 2008
Michael
Hey Guys
I have a major update……
Mandy is not doing too well today. We just got a call from the nurse, She was running a low grade fever Monday, and her oxygen stats dropped so they put her back on oxygen, and ran some blood tests. The results came back today, and she has some kind of bacterial infection in her blood. They don’t know what kind, it will take a few more days to find out what. She had also had an abscess on her tummy that tested positive for MRSA, which is a Staph infection that is resistant to Antibiotics.
So they have decided to transfer her back to the hospital in the PCTICU which is where she was before. They have to install a Pic Line and re-run all of the tests. It feels like a bit of a setback She was doing so well. We saw the cardiac doctor Monday, and her heart is doing well. She still has two small holes in the heart, but the doctors expect these to close on her own. She was supposed to be transferred to the long term care facility today, so that we could go through the more intensive phase of our training of how to take care of her. Obviously that’s not going to happen right away.
The thing that really stinks about this is that her insurance would help us with transportation to the hospital for training, but not for visiting her. So we are back to the whole trying to get around thing. We will make do, but it is pretty frustrating, not to mention expensive.
We will keep you informed as things develop. I know God has his hand in this
Love in Christ
Michael and Teresa Blaes
PS. Please feel free to share your thoughts by clicking the comment link below.
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A Night with Mandy
16. April 2008
Michael
Hi Everyone,
I have another quick update. Mandy is doing really well. She is growing, wiggling, moving, crying etc just like normal baby does. I love saying that. There for a while it was touch and go. Many of our supporters around us were trying to prepare us for the worst, while hoping for the best. But when you are a follower of Christ, surrendered to his lordship, how can you possibly lose. We made the choice early on to totally give Mandy’s life and care over to God, and to take our hands off completely. It was easier than I expected. There is something about resting in your creator’s arms know that regardless of what is going to happen. He has everything under control and is working it all out for your good and his glory. I repeat, when you are in that position how can you possibly lose. Im reminded of one of my favorite scriptures.
All things work together for good to those who love the Lord and are called according to his purpose. Rom 8:28
So what our adversary means for evil and our destruction, God will turn the situation for our good. Glory to God! Thank You Jesus!
Forgive me for getting a little preachy. My heart is just overflowing with love for my heavenly father.
We spent a couple of hours at the hospital last night, working with Mandy. I changed her diaper, checked her temperature and cleaned the area around her G-Tube. I held her for a little bit until she started crying. I heard a little congestion, so I suctioned her, but she wouldn’t settle down., Then we realized that she was hungry, just like a normal baby, even though she doesn’t eat by mouth. We set up her feed, and she settled down and fell fast asleep.
You may be saying to yourself “Duh” but you have to understand that for most of her life she was fed through an IV or Nasal Gastric Tube. Most of the time she was heavily sedated, so we didn’t get to see her reaction. She just lay there and pooped, and slept. So it is so cool to see her express her needs. I learned some new things last night as well, including how to give her medication through the G-Tube.
Here are the plans for the next couple of weeks. Mandy has 3 Doctor’s appointments, and if everything goes well, she will be transferred to the long term care facility on the 23rd. It will take a few weeks to get all of the resources in place, including home nursing, respite, etc. After that she will come home. I’m glad we have some more time to work with her, learn the skills that we need to know to take care of her, and get things ready here at the house. We have most of what we need, We just have to get it organized a little better.
Thanks for all the prayers,
Love in Christ
Michael and Teresa Blaes
PS. Please feel free to share your thoughts by clicking the comment link below.
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Mandy’s Condition and Next Steps
11. April 2008
Michael
Hey Guys,
It has been a really busy week and this has been my first chance to write an update. I apologize for that.
Mandy is doing great! She is growing like a little weed. It seems like every time that I hold her she is getting bigger. One really cool thing happened yesterday; I put Mandy in a swing for the first time. I wasn’t sure how she would react. At first she was a little fussy, and then she settled down and fell asleep. It was so cool to watch her doing something a “normal” baby would do. It is starting t feel like we are reaching the end of this part of the journey and getting reading to begin the next.
I have learned how to take out and replace her trach. It’s not as hard as I thought it would be. It is a little unnerving though, knowing that you have to get it back in place fairly quickly because it is her only way to breathe.
The doctors are weaning her off of the last of her pain medications, and the oxygen. If everything goes as planned, she will be weaned off about 10 days from now. Then they will want to watch her for a few more days and make sure that she is doing ok. After that she will probably be transferred to another facility.
Teresa and I want to make sure that all of the support Mandy needs will be in place, including equipment, long term care, home nursing etc. It will take 3-4 weeks to get everything into place. And the process cannot begin until after Mandy is discharged. So based on everything, it will probably about the first of June before she comes home.
Teresa and I are totally comfortable with the time table. We have some work to do to get ready ourselves, including taking CPR classes. Also we need to be completely confident with all the aspects of her care. We are still a little nervous about some things, especially the trach care. I for one want to do the change a few more times under supervision before I will totally comfortable with it.
Thank You for all your prayers and comments. They mean a great deal to us. It seems like just about the time that things get difficult, someone posts an encouraging comment.
Love in Christ
Michael and Teresa Blaes
PS. Feel free to share your thoughts by clicking the comments link below.
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Mandy not feeling well
31. March 2008
Michael
Hi Guys,
I have a quick update for you. Mandy is not feeling well today. She was a little fussy, and started running a fever and started throwing up and having some diarrhea. They are giving her IV fluids to avoid dehydration. They are going to stop her feeds, and run some tests to find out what is going on. The doctor said that it was probably some kind of an infection. He didn’t seem worried.
Please pray for her healing, especially that the fever will go down. We cannot really work with her right now while she is sick.
This new parent stuff is an absolute trip. You don’t think about all the things that can go wrong with a newborn, much less one who has been through as much as Mandy. But then you come across someone else who has it worse than you do. There was a parent we met whose 4 year old daughter is extremely sick, and has some brain damage as a result of high fever of over 107. They really do not know what is wrong with her. So I would like to request that we pray for her as well. Also pray for her parents, who looked totally exhausted.
he was crushed for our iniquities;
the punishment that brought us peace was upon him,
and by his wounds we are healed.
Michael and Teresa BlaesPS Please feel free to share your thoughts and prayers by clicking the comment link below. Thanks!
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