day 88

Thursday, December 20, day 88

Great is Thy Faithfulness!!

This morning I am sitting alone at a table in the hospital cafeteria eating breakfast. It took me a few minutes to realize that I was in fact the weirdo siting by themselves and singing, out loud. And you know what- I don’t care. I am OK with being that ‘crazy’ person!

This morning I have been singing Great is Thy Faithfulness. We don’t really have any good or encouraging news to be singing about. But God is faithful to provide what we need when we need it. In fact, this week has been a rollercoaster. I know- shocker! It seems that every week and even every day are a ride to some extent!

Emma didn’t pull off quite enough fluid yesterday. It appears her peritoneum is slowly giving out. Her IV access is leaking off and on and there really is no other place to put anything long term. On Tuesday she had an MRV. It is an MRI of the vascular system. Just as we had suspected- almost all of the larger veins have clotted off and many smaller ones have taken their place.

Today her eyes are very swollen but she finds comfort in just holding your hand. She is still on the ventilator. They are slowly weaning her support back. She rests well for most of the day and fights having her days and nights mixed up. I know that God is still using Emma. So we are waiting and trusting in God’s faithfulness.

Jason will hopefully join us in the next day or so. We will be glad to see him!

Much love!!

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day 83- 3 months old!!

Saturday, December 15, day 83

Sometimes weeks go by in a blur. This was one of those weeks. We didn’t have any drastic changes one way or the other. Most importantly, Madison came up to see Emma on her three month birthday!!!

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We had a good time getting to see Sister together. We definitely pushed the limit on lunch time. To avoid the extremely rare two year old HUNGRY melt down….. we had quite the snack of goldfish and more goldfish. We found some lunch and Madison found an okra-pop. She may or may not have had way too much fun eating some okra with her ketchup…

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Please keep praying for all of us and our sweet Emma Kate.

day 79

Tuesday, December 11, day 79

This past weekend was very hard.

Emma’s main line(IV access) started leaking and her dialysis quit working on Thursday and Friday.
Saturday afternoon her line stopped leaking and her dialysis started working a little. There is really not a medical explanation for why things appear to be working, at least for now. Of course, I believe it was purely a God thing. Over the weekend Emma was able to pull quite a bit of fluid off. Her blood pressures seem to be tolerating it ok and everything else seems relatively happy.

It appears that Emma’s peritoneum is trying to give out. Without a properly functioning peritoneum she cannot be dialyzed. There are no good options without dialysis.

Other than her fluid status and her peritoneum that is possibly giving out, she is doing well. Emma is much more alert. She will look at you and hold your hand for quite some time.

I will never get used to having “the talk” with doctors. Over the weekend I think we heard it at least 6 times. I also sincerely hope that I never ever have to have it again! Although, I am sure we will. Jason and I are going to continue to help her fight for life as long as we can.

God is not through with Emma for whatever reason. I am not sure of a time frame or of what His plans are for our sweet girl. She remains in His hands. God is definitely in control of this entire situation. He is still working.

Sometimes I have a flesh moment and lose sight of what God is doing. I continue to pray for healing and Divine intervention. There is great peace in knowing that Emma belongs to God.

Even little Maddie knows. It stirs my heart to hear her pray, unprompted, for ‘my baby sister Emma.’

day 77

Sunday, December 9, day 77

So, let me tell you something about the week before last.

We are on the Trauma and Neuro floor of the PICU. Sometimes I think being on this floor is harder not because of our situation but because of everything else that is here with us.

Parents talk. Parents talk to each other and family out in the waiting area. Some things you are directly involved in hearing and others you can’t help but overhear. There are sick kids and accidental and non-accidental injuries on this floor. It is the non-accidental injuries that are the worst. I mean, how these kids end up like they do is unfathomable. It is even harder when they pass on.

Last week I could feel something hadn’t been right for several days. On Saturday morning I had a sudden urge to put a mark on the door of Emma’s room. The visual I had was of a wood framed doorway with blood on it- much like the illustrations for passover in the Bible. I finally figured out there were three Southwest Transplant kids on the floor. This is code for ‘three deaths’. The creepy feeling I had for several days was in fact the angel of death. Yet at the same time out of such horrible circumstances several children were given the gift of life from those precious children who are now in heaven. It is so strange to feel that feeling and yet know there is a blessing there as well.

day 69

Saturday, December 1, day 69

No surgery for Monday. Maybe next week we can try again. Emma has not handled her fluid status well in the last 36 hours. I am pleased to announce that there will be a permanent doctor change coming very soon. There may have been some mismanagement of Emma. Have no worries, I am all over it! 😉

On another note, Madison came back to Dallas to find her pack and play had been replaced with a big girl bed!! She was so very excited. The evening was filled with twirling, jumping for joy and squeals of excitement.

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day 67

Thursday, November 29, day 67

My God is so great, so strong and so mighty, there’s nothing my God cannot do!!!!

Emma has a surgery date! Monday, December 3. Wow! I am a mixed bag of excited and nervous. I have no words to describe where we are. This coming weekend will be bathed in prayer.

If Emma catches anything between now and Monday, we will likely be at least another 4 weeks out for another surgery date. Time is so precious right now. We don’t need to put this off any longer than necessary.

Prayers for continued health, a smooth surgery and recovery and a whole myriad of other things would be much appreciated!

God has a plan!

Thanks, y’all!!

day 64

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Monday, November 26, day 64

Holiday weeks are always crazy, no matter where you are or what you are doing.
When you are in school, at any age, the first part of the week, ahem the first two days feel extra long at the start and by the end of the day you are wondering where the day went. The rest of the week is a blur. You can’t wait until the big day!

The same holds true for when you are older- except the first two or three days of the week are frought with preparations. House cleaning. Decorating. Grocery shopping. Food prep. House cleaning. Cooking. And then you fall in the floor with exhaustion just in time to spend all the next day with family and possibly the next day(s) shopping. Now, this is the plight of most women over the holidays. By the way, the ladies who say it isn’t too bad are most certainly telling you a half truth! Holidays are hard, exhausting and if there is enough energy left you can enjoy the company of family and friends. There might be something to be said for just going to Luby’s! 😉

All of that being said- I bailed completely on Thanksgiving this year. It wasn’t totally planned, but bail I did.
At the beginning of the week Emma had a complete doctor turnover. On Tuesday I started feeling just a tad icky with throat drainage. It wasn’t worth the risk- I stayed away until Friday. That was quite possibly the hardest thing to do. Staying away was very hard.

I quickly realized that I was a little tired and trying to get run down. So, after 58 nights of quality recliner sleeping, I acquiesced and got 4, yes 4, consecutive nights of rest in the bed. You would think that I would have rested really well- it was fair. The nurses, Jason and my mom put up with my micromanaging from afar quite well. 😉
I digress. This Thanksgiving I napped on the couch right through the day of preparations. My mom, mother in law, sister in law and future sister in law did all of the work! I think I literally may have mustered up the energy to wipe the counters, once. By the way, I probably can’t say it enough- thank you. The food was delicious!!

Emma did really well last week. And even though her outfits changed she didn’t have a clue it was a holiday week. She continues to be stable and is making some progress. She is on full volume feeds and they have started fortifying with some formula. Her sweet little face is so swollen. The clots in her neck keep her from being to effectively pull the fluid from her head. The doctors assure us it is a cosmetic issue for now and that it will come down. Hopefully this week will be another good week. We should hear about a surgery date later today.

I took a video of Emma over the weekend and showed it to Maddie. Her eyes were open and she was looking around. Maddie came out with, “Baby Siter All Better!!!! Open Her Eyes!! Go Home?” Oh my, if she only knew! I am glad that Madison is not any older- that would be harder.

With a surgery date looming on the horizon, we have been extra careful about keeping away from sickness. Last night I decided to grab some coffee. I NEVER ‘grab’ coffee. Well, I was so distracted by the fact that the girl running the register was a touch sick that I messed up and forgot to order decaf. OH MY! Let’s just say last night was supercharged. It began with hot flashes( by hot flashes I mean sweating) followed by itching and possibly an extremely over chatty mom. Thank goodness for sweet night nurses that don’t seem to mind chatting it up with a psyco mom. 😉

day 59

Wednesday, November 21, day 59

We had our meeting with all of the doctors today. The general consensus is that no one wants to wait very long to have surgery.

Assuming they can make some forward progress on the ventilator and get a little more nutrition in her tummy she is looking at the next week or so to have surgery. They want her to have been stable for several days after they make those changes.

The time frame for the growth of the tumors is not quite as short as we originally thought. Everyone feels comfortable waiting just a bit longer. The whole idea is to take Emma’s kidneys out before they develop the tumors. There seems to be some time but not months and months.

Hopefully Emma will continue making progress and not have any huge setbacks. Setbacks could cost us the tentative surgery date and allow more time for potential tumor development.

Keep us in your prayers!! Have a wonderful Thanksgiving- love on your families as much as you can! Hopefully the next few days will be smooth sailing!!

quick update

Just a quick update. We had hoped for a big meeting today but were unable to schedule everyone until tomorrow. The surgeon feels comfortable proceeding. The question now is finding the optimal time. If the oncologist thinks we can wait a week or so, that will give Emma a chance to hopefully improve even more. If not, we will do it as soon as possible. Once again, I will let you all know as soon as we have a more definite plan.

day 58

Tuesday, November 20, day 58

At the start of Thanksgiving week I was not feeling so thankful.

All last week I have been apprehensive about this week. Not only are we not going to be home for any of the holiday festivities, I have been grieving over the loss of “normal” in general. Oh, to be home and complaining about something like dirty floors!!!! We had a huge staff turnover.

Yesterday was also the start of a whole new set of doctors. The transition was a little bumpy but we made it through. I may or may not have required a few hours(my first time to do this) of tv watching therapy.

I have started a list of things that I am thankful for- it is getting longer by the minute. So all the way around, that is better.

It is a good thing I got in that “therapy” yesterday. This morning has already been busy. The nephrologists came by first thing. Emma’s kidneys look worse. The cancerous cells are growing and her kidneys need to come out ASAP.

We are waiting on the surgeon to come by and evaluate her this afternoon and oncology will come by hopefully this morning. Emma may not be stable enough for the surgery. We will know more this afternoon. Once again, our plan is to give Emma the best chance she has.

Sweet friends, you all know what to do!
Pray, pray, pray without ceasing.

On another note, today is the first of our regularly scheduled Maddie visits. I am so excited for the girls to be together this morning!!

Updates will come later this afternoon as a plan develops.