Settled on Saturday

Today is much better for me. I'm not coughing as much, well hardly at all now. Emily had a hard seizure this morning and is having some trouble with her feeding. But she is home and settled and everyone is happy. I've had to open her tube to drain today because she vomited this morning. She is only on 1/2 strength formula right now and I don't think I'll make it any stronger till she seems more comfortable. I'll have to call her GI doc on Monday. Hopefully we can work with where she is at and not have to go back to the hospital.


Grace is SO happy I am home. She continues to ask me to come watch her ride her bike. She is so proud of herself for learning to ride. We have been waiting for this day so we could all go riding on the bike trail through town. Its funny that she didn't want to do it when she had training wheels on her bike. Now she can't wait. Emily's nurse will be back tomorrow so maybe we can get out to go riding together.

We’re Home

Emily 1 hour post procedure.

We were discharged about 7:30 pm and had an uneventful ride home. Emily is doing well with her new feeding tube.

I however had the worst day of this wicked illness. I was feverish and coughing and couldn’t wait to get into my bed. I’ve never had a hospital stay where I came down with some mystery illness. I’m praying that Emily had this one already.

Thanks for all the prayer and support. You guys are the greatest!

Procedure Done!

Emily was back in her room within an hour. She has her new G-J tube in place and is on Pedialyte already. The goal for today is get her up to speed and then she can be discharged! Yippee!

Yesterday our visitors included Pastor Doug, and another therapy dog!

This dog’s name was Aiden, and he is a Corgie.

Each day brings another ship passing.

The cup of a little girl who’s either had not enough dinner, or not enough Ritilin….. Hummm Me thinks it was the latter.

A fire truck races down the street occasionally.

The evening was beautiful.

The morning even better.

No more vomiting!

Hopefully next time I write it will be from home.

Have a beautiful day!

The Plan

After being so busy during the night trying to get an IV start (and after having some anti-nausea medication) Emily was able to get some sleep. 

The doctor came by this morning and spoke with me about putting a G-J (gastrostomy jejunostomy) tube in Emily.  This means her g-tube (gastrostomy feeding tube) will come out and another type of tube will be put in.  It will be longer and go further down sitting in her jejunum instead of in her tummy. 

Since she already has a g-tube  the radiologist will just thread the G-J through the existing stoma (hole) and into place.  I haven’t heard if she needs to be anesthetized for it. 

With the feeding tube lower we hope to give her tummy a rest and still be able to give her the formula and medications she needs.  She will start Pedialyte again today, and hopefully be able to manage it without pain or gagging. 

I know I’ve been in the hospital too long when the toothpaste in the hospital dittybag tastes good, when watching the jewelry channel catches my attention, and when I forget how to use metal silverware and eat off of a real plate. 

I found some throat lozenges and I’m feeling better already.  Please pray for Emily’s feeding tube placement to go easy, and that she will have peace and comfort during the procedure.

As always, I’ll post again when I have more information.

On the Seventh Day

Emily had a difficult evening. After much debate back and forth about what and how she should be fed Emily answered by giving back everything given, and more. Her IV came out the day before so she needed to have another IV started. This proved near impossible for two lab techs who then had to go get a third person to help. Six awful painful sticks later she was hooked up to the IV pump. The time was 12:15 in the AM and Emily rested.

5:00 AM – Unplug bed and roll Emily through cool and mostly empty hallways to X-ray. Not sure my eyes were really open. Pictures of tummy area taken. Repositioned Emily and rolled her back through mostly empty hallways, and back into her room.

So yesterday’s plan was to get her back on her feeding pump, even if only on Pedialyte. That failed. Not sure what today’s plan will be.

Yesterday’s emesis was much lighter. Stomach has stopped bleeding I think. My goal for her today: No vomiting.

Someone in here shared their cough with me. My goal for today: Seek and secure throat lozenges.

This passage in my daily Bible reading really touched me so I thought I’d share it.

22 For the Lord will not forsake His people, for His great name's sake, because it has pleased the Lord to make you His people. 23 Moreover, as for me, far be it from me that I should sin against the Lord in ceasing to pray for you; but I will teach you the good and the right way. 24 Only fear the Lord, and serve Him in truth with all your heart; for consider what great things He has done for you.

1 Sam 12:22-24 (NKJV)

View from our window yesterday.

Evening and morning were the seventh day.

What to do When in the Hospital

What do you do when you spend time the the hospital? Grace is getting bored with crayons and beads while visiting Emily. So yesterday we needed to get a little creative.

Here’s what was happening outside our window yesterday.

Last night I decided to go out and get a photo of the fountain after dark. It was beautiful outside, the air refreshing. After snapping a few photos I tried to come back through the front doors and found they were locked! I could go out but could not come back in. Oh boy…. I was going to have to call Security to get back in, however a minute or two later another family came walking out the doors so I was able to get back in. Whew!

Evening and morning were the sixth day.

Prayer requests:

1. Emily’s tummy needs to stop bleeding.

2. Emily needs to be on her feeding pump without vomiting.

3. Mom needs to stop coughing (I hope it’s the same bug Emily had and not something I picked up from here).

52 Week Blessing Challenge – Week 6 Prayer

I am so blessed to have so many people praying for us! I cannot begin to describe the support I feel. Our friends and family, and many of you that we have never met have touched our life in so many ways.

God has heard your prayer and Emily has gone pain-free! I would call it a miracle. She has been on Morphine for five days, and then yesterday didn’t need it at all. Thank you so much for crying out to the Lord on behalf of our daughter.

And also, I am so blessed to be able to pray for some of you. As I read your blogs, and your kind notes I pray for each of you. No request is too large, or too small, for the Lord.

The hand of the Lord is not so short that it cannot save, neither his ear heavy that it cannot hear. Isaiah 59:1

This verse reminds me of a little guy we had for foster care one year. As a newborn the hospital pushed him into a corner and waited for him to die. He was sure to die they said. At two-months-old he had not passed so they needed to find a home for him. We were called and I happily accepted him for foster care.

This little guy tried to die every day. But we held him and prayed for him. His brain was severely damaged and he could do very little except breathe, which he didn’t do very well. Some days the seizures we so difficult to watch. But he hung on.

My husband would complain that there must be more we could do for him. But there wasn’t much anyone could do for him. And so we prayed for him, and that child lived! He grew, and even though he could not see, could not hold his head up, he learned to say “Dad”. He also learned to say “juice”, and “NO”. What a guy.

At age 3 this little guy who refused to die was stable enough to move in with his grandparents. And his grandmother spent the next three years doting on her wonderful little grandson who was only supposed to live for a few days at the most.

At age 6 he died. Going to be with the Lord at God’s timing, not mans. Prayer does change things. And how blessed we are to be free to pray any time we are so inclined. How blessed I am to be touched by a family who prays, and by a God who hears!

If any of you have a need that you would like prayed for, please send me an email or post a reply to this blog. I’d be happy to include you in my prayer time this week.

Two Steps Forward – One Step Back

Sunday was not exactly the day of rest that I had planned. Emily was doing fairly well so a friend came to stay with her at the hospital as I needed to go home for a short time.

When I got home the first thing Grace said was, “Mom, Look what I can do!”

Our horses had been sold and they were being moved to their new home. I wanted to be there to see my horse one last time.

Breeze and Nahala will be missed.

When the horses were off to their new home I came back to the hospital to find that Emily is in pain again. The Morphine has been stopped and another pain med given. This was the plan, however Emily was now visibly hurting again. So the Morphine was re-started.

The doctor had written for her formula to be started at 1/2 strength in the evening. When it was started she vomited. So it was stopped for a short while. At midnight the pump was started again and Emily ground her teeth and moaned for several hours till she finally vomited again.

Her stomach is bleeding again. It was awful. The pump was stopped and IV turned on again. Her feeding tube is open to drain anything in her tummy. Please pray that this clears up. We can’t go home till the bleeding and irritation stops, pain is controlled, and she can be fed again without bleeding.

Evening and morning were the fifth day.

A Walk in the Park

Well, it hasn’t exactly been a walk in the park since Emily’s been sick. However there are a few bright spots in our day. Yesterday Emily was able to start the Pedialyte. She has done great on her feeding pump with no problems. She is still in pain, but are giving her pain meds as she needs it. She is doing well on the pain meds and is sleeping so much better.

I was able to go outside and eat my lunch in the flower garden.

You can click on any of these images to see them better.

Isn’t this tree beautiful?

I really like these purple puffy flowers.

I find it amazing that these tulips are still in bloom.

And the beautiful fountain in front of the clinic buildings.

Today Emily should start her formula again and hopefully go home tomorrow. We’ve talked to the urologist about the kidney stone. It is not blocking but are formulating a plan to keep her comfortable until next weeks Lithotripsy which will happen at another hospital.

Last night was quiet and uneventful. The sky gave us a warm sunset but the morning appeared overcast and cool.

Evening and morning were the fourth day.

Saturday - Fun in the Sun?

Well, I wish we were out in the sun. However it is still shining through our window here at the hospital. And when you live where it rains I guess that is good enough.

Yesterday was a much better day for Emily. The bleeding in her stomach has stopped. Her feeding tube is still open to drain and we’re watching for problems with the medicines.

Emily’s visitors included our friend Suzi (Luke’s mom)

who brought Emily these wonderful balloons

as well as a sandwich for my lunch. We had a really nice visit.

Emily also received a visit from another therapy dog.

This dog is a Burmese Mountain Dog named Peek-a-Boo. Emily really enjoyed this visit. She got a little information card that had Peek-a-Boo’s picture and information on it and everyone who comes into her room gets to hear all about the therapy dogs who have visited.

Emily is still coughing, especially when she is in pain. So we are taking that information and giving her pain medication based on her breathing. I have been using her “Yes” and “No” cards to help assess her need. She is responding very appropriately to questions when the cards are used.

“YES”

“NO”

Emily’s night was marred by the fact that her IV blew and she needed a new one at midnight. She slept well after that.

Evening and morning were the third day.

Friday Morning Update

These updates have been coming to you from the 6th floor of the hospital, Emily's room is on the 7th. The computer on the 7th floor isn't working. I've finally figured out how to connect to wireless in Emily's room. Ahhhh...

Yesterday morning was really good however in the afternoon Emily again had some bleeding in her tummy. The pain from it is enormous and she begins to have breathing difficulties that look like really bad asthma. I'm glad that we know now what is happening.

I spoke with the gastro doc a little bit ago and the plan is still to keep her tummy from bleeding before starting her on any tube feedings. She was supposed to start Pedialyte today but I think that will be held for a day. We also need to be able to manage her pain before going home. So, looks like she'll be in for at least another couple of days.



Emily was thrilled with her visitors yesterday. She had a therapy dog come to visit,
as well as her teacher from school.

Her home-care nurse was able to come by and stay for a little bit, and then of course Dad and Grace visited in the evening. (Dad's black car driving up the road)

I slept so much better last night. Jeff brought dinner from KFC and we had a great picnic round Emily's bed.

Emily has been in a good mood and when she starts looking sad I show her the picture of the therapy dog and she smiles.



The sun is still out, and the view from her room is still beautiful. Makes being shut-in not quite so bad. I've taken a few pictures of the scenery and such and can now upload to the blog.

Evening and morning were the second day.

Thank you for your continued support.

More later....
Michelle

Thursday is Better

Emily is doing SO much better today. Her feeding tube was left open to drain and she doesn't seem to be bleeding any more. The pain she has been experiencing has also diminished. She has been having so much pain lately it's difficult to say what starts it and what is helping. Now that the bleed has stopped I have to wonder if she was having more pain from that and not so much from the kidney stone (which I know does hurt her some). The goal now is to give her tummy a rest and try food again in a day or two. She has started on a couple of new medicines and one old one has been discontinued.



The view from her bedroom window is so beautiful. I can see Commencement Bay, and even the Olympic mountains. The day is sunny and the sky blue. What a nice day for recovery! I didn't sleep well last night, the chair in the room that makes into a bed of sorts was just awful. I could feel the separation in the cushions and woke up with a headache. I'm praying for a more comfortable night.

As you pray for Emily please remember LF in your prayers. She is recovering from hip surgery. Our friend Luke also needs prayer for better health.

Have any of you listened to the Experience Bible? I received mine for Mother's Day. It is a wonderful dramatization of the entire Bible, mostly by famous actors. The dramatization is on several disks which I installed on my iPod. Its neat to be able to carry it with me, or listen while I am resting.

Again, thank you for continued prayer.
Michelle

Wednesday Night update

It's been a very long day. Emily's nurse was able to stay with us during the entire day and I felt ever so fortunate to have her here with me.



After we checked into the emergency department I noticed that Emily had some blood in her feeding tube. In the morning while getting her ready to leave we saw that her tummy was very distended so we stopped the feeding not knowing what the problem was. Good thing we did. She has been bleeding in her tummy somewhere. So when I saw the blood in the tube we opened it up to let it drain.



About 6 ounces of dark stuff looking like coffee grounds and general yuck flowed out. The nurse tested it and it was positive for blood. So, instead of being admitted for lung issues she is really in for the GI bleed. And of course since the tube was open and draining we couldn't give medication through it. So poor girl didn't get any seizure meds (or any other meds) in the middle of the day. Its after10pm now and she just got her meds about 45 minutes ago. Since she didn't get her medicines she had 3 separate seizure episodes, the last being the most lengthy at 33 minutes. The valium has kicked in and Emily is resting now.

The plan for tomorrow is to let her tummy rest, feeding her by IV, and of course giving breathing treatments. Emily did have a CT scan today and it showed the kidney stone, but the bowels were distended with no problems noted. So, she'll just have to rest up and stop bleeding. Once her tummy has rested a bit the floor doctor thinks that the GI will likly scope her to see where the bleed came from. So going into a holiday weekend I'm not sure what that means for us, stay in the hospital till a scope can be done, or do it on outpatient and leave here soon. I just don't know.

Thank you SO much for all your prayers. Your emails have touched my heart, I really appreciate it. I'll write more tomorrow.

Emily Update Wednesday

Our nurse and I have put up a valiant fight for Emily's health but we just can't get her over the worst of it. Yesterday was day 5 of steroid treatment and she is supposed to start weaning down today. Things could get real bad from here on out if we try to wean her from the steroids as she is still on oxygen also. So after I put Grace on the school bus I'll be taking Emily to the hospital.

Emily on one of her better days.

I'll send updates as I can. Thank you for your continued prayers and support.

Wordless Wednesday – Rainy Day Fun

We live in Washington. So, what do we do when it rains?

We play,

and play,

and play some more!