Please Pray For My Nephew's Daughter

Kitty · 05-05-2011, 05:49 PM

Today's update:

"Praise the Lord, we're going home tomorrow! We have gotten some answers and I am relieved.

So Claire finally tested positive for c-diff and has been on treatment since Tuesday afternoon for it. We're ahead of the game on that. She will stay on the medication for another eight days or so and should start to improve over time. Along with that, she will go home and have TPN through IV at night while she sleeps until her eating returns to normal. After being on the TPN for 5-7 days, her body will have enough nutrition to replenish the albumin it has been wasting. So we are looking at another week to recover, but we get to do that at home! Again, the course in June will need to be adjusted so that we are not going through this again a week after the antibody has stopped.

Please continue to pray for her healing. The doctors assure me there is no permanent damage and she will completely recover. This is all related to the antibody therapy, except the c-diff. That's just a little bonus. We are in the home stretch and we can't give up now. Patient endurance is one of the many themes of our lives. I am grateful to God that any strength we thought we had left for finishing these treatments, He has thoroughly weakened so that we would completely depend on Him. You will see His power and strength increasing in us and glorify Him. This is our hope for you as you walk with us on this journey.

Jeremiah 9:23-24, 23 Thus says the LORD, "Let not a wise man boast of his wisdom, and let not the mighty man boast of his might, let not a rich man boast of his riches ; 24 but let him who boasts boast of this, that he understands and knows Me, that I am the LORD who exercises lovingkindness, justice and righteousness on earth ; for I delight in these things," declares the LORD."

Kitty · 05-06-2011, 12:41 PM

A little setback:

"Just a quick note to ask you to pray. We would have been able to go home Thursday, but Claire's insurance denied the at-home TPN and so the Dr. had to write an appeal. Now they are requiring a pre-authorization for the medication to treat the cdiff. This could keep us here another night. It is beyond frustrating. I guess they enjoy spending money because it is costing them A LOT to keep Claire in the hospital. Please pray that the pre-auth gets done TODAY. If we don't get approval today, we will not go home until Monday because home healthcare does not make and deliver meds on the weekend.
I have been waiting all morning to hear something and no one has talked to me about any of this. I am not sure if we are going home today. On top of all of this, Claire woke up this morning and vomited. I haven't seen the doctor, but my guess is that nine days of taking medication around the clock on an empty stomach has finally caught up with her. She is taking Flagyl every six hours which is harsh on your tummy, Neurontin three times a day and Tylenol as needed.

On a positive note, her albumin went up a little and this is great news. She is getting better everyday!"

Chemar · 05-06-2011, 01:55 PM

honestly, I am amazed at these insurance companies!

Kitty, I may have missed it in an update, but why are they treating her with all this heavy duty stuff now, instead of letting her little body recover from all that went before? She seemed to be doing so well a while back?

Kitty · 05-06-2011, 02:02 PM

Quote:

Originally Posted by Chemar

honestly, I am amazed at these insurance companies!

Kitty, I may have missed it in an update, but why are they treating her with all this heavy duty stuff now, instead of letting her little body recover from all that went before? She seemed to be doing so well a while back?

I know. I'm sure it's costing them more keeping her there than just letting her be treated at home.

She is on antibody treatment now. It's the last phase in the course of treatment she's having. I admit I don't know alot about it but her mother assures us that she won't have any lasting damage from it.

Kitty · 05-09-2011, 08:29 AM

Today's Update:

"Where to begin? Claire and I left the hospital around 6:30pm Friday night. We sat in the room packed and ready just waiting on the word. You would not believe the ups and downs that we experienced that day. Most of it was insurance related. I reached my limit and called them directly in tears. After having a breakdown on the phone with the representative, our case was moved up and approved that day. However, it took SEVERAL phone calls to get them to fax the approval to the pharmacy and so on and so on. The obstacles did not end there, but I won't go into all of that. We arrived home at 8:30PM after waiting for 30 minutes in Marietta for the prescription. When we got home, I had medical supplies to sort through. Claire was in bed by 9:45PM hooked up to TPN and totally exhausted.

Seth and I had plans to go away this weekend for our anniversary on 5/4 and decided to go on Saturday. We both really needed it. I also needed to get some sleep even if it was for one night. We went to Blue Ridge and stayed in a cabin up there. It was wonderful and I slept really well. My parents kept the kids for us at our house which included giving Claire meds at 2:00AM and taking Claire potty every two hours throughout the night. They are such a blessing and we could never make it through this without them. This is what we do every night. Please pray for me as I am severely sleep deprived.

Okay, enough whining. Claire is improving everyday!! She has started eating and drinking. Her swelling has completely gone down. She is still too weak to walk, but we're working on that. Given all that Claire has gone through, the doctor has postponed Course III until later in June. We are so relieved. This means we have about six or so weeks to recover. We need it.

Please pray for Claire. I am going to be working on restoring Claire's gut over this time because she is more susceptible to Cdiff. Please also pray for wisdom for us. We are sensing that our little girl has reached her limit. We are asking God to protect her from bacteria in her line and gut through the next three courses. This is what keeps causing all of the major complications.

God has been so good to us through all of this. We are looking to Him to protect and heal Claire. We are also asking for wisdom and He has always directed us so graciously. We are extremely grateful to have a nice break. If Claire gets a fever during this time, we will be back in the hospital."

Chemar · 05-09-2011, 03:48 PM

Kelly, not sure if Claire can tolerate dairy products, but if so, Kefir is a marvelous natural probiotic that really helps the good bacteria in the gut

Continued prayers lifted here for her

Kitty · 05-10-2011, 08:31 AM

Thanks, Cherie. I gave her your suggestion and she said to tell you "thank you". Claire is eating more now and seems to be getting a tiny bit stronger each day. She sure has had a long, hard road. Thanks for keeping her in your prayers.

Kitty · 05-16-2011, 04:42 PM

Today's update:

"Claire had a clinic appointment today and is doing much better. She finished her meds Thursday and came off TPN Friday. She has been eating and drinking more everyday. However, she has dropped a little more weight from last week. Please pray with us that we can get her weight up.
Also, she is still not walking or standing. After observing her today, the RN feels like Claire is able to, but is making the choice not to. It is a control thing. She has been through a lot and this is the only thing she can control. She is also very stubborn. Pushing her never works. So we are going to work on rewards and incentives to enourage her to make that choice. We are hoping that more nutrition will help.
She seems frustrated a lot. We are praying for wisdom how to get her behavior back on track. She is just not herself. She seems fed up with it all."

ron h · 05-16-2011, 05:58 PM

sorry to hear my prayers are with you
ron h

linda_sd02 · 05-17-2011, 05:03 PM

Quote:

Originally Posted by Kitty

Today's update:

"Claire had a clinic appointment today and is doing much better. She finished her meds Thursday and came off TPN Friday. She has been eating and drinking more everyday. However, she has dropped a little more weight from last week. Please pray with us that we can get her weight up.
Also, she is still not walking or standing. After observing her today, the RN feels like Claire is able to, but is making the choice not to. It is a control thing. She has been through a lot and this is the only thing she can control. She is also very stubborn. Pushing her never works. So we are going to work on rewards and incentives to enourage her to make that choice. We are hoping that more nutrition will help.
She seems frustrated a lot. We are praying for wisdom how to get her behavior back on track. She is just not herself. She seems fed up with it all."

Kelly, I'm so sorry that you are having this added concern about Claire. It may be that the same inner strength and stubborness that she summonded when fighting this terrible disease, can't turn off so quickly. I also think you're right about it being a control issue. As you said "She has been through a lot and this is the only thing she can control." Your approach seems right. It may be that it will just take time. That's such an easy thing to say, in fact, I hate to even say it, but she will grow and return to her new self, just as surely as she had to adapt herself and her life to being so ill.

Just as she was so fortunate and blessed to have her family's total support, you all will be just what she needs in her road to normalcy. I guess that will be another job for you, but at least one with a good ending in sight. I have followed Caire's and your family's story that you were so gracious to let us share. Claire's bravery and your working faith as you struggled through these waters have been an inspiration to us all, I'm sure. Thank you so much for the contribution that your journey and unique demonstration of faith has given us. Linda

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