Have Been Home For A Week

My apologies for dropping the ball on blog updates since we have been home. I've quickly updated my FB page most days, but haven't made it on the computer long enough to update here. I'm sorry if we have kept some of you hanging.

We were so thankful to be home, but it wasn't without quite a few bumps in the first few days. Taylor continued to have severe abdominal pain and vomiting. Tuesday was the worst. We almost took her back to Cinci. She stayed tucked in a ball because the pain was so intense. She only sat up to vomit. The decided to take her off of the ex-lax completely to see if that would resolve this major issue. She was a brand new kid once we had it out of her system for about 24 hours. No pain/no vomit. Could not believe the difference. She has started eating and drinking MUCH better.

She felt so good Wednesday! We even made it down to the Warren County Fair for a while that evening. She had fun but tired out pretty quickly. She rode in the stroller the rest of the evening.

It was so good to see friends and family and EVERYONE was excited to see Taylor. :)

The drawback to taking her off the ex-lax meant we needed to do irrigations 2 -3 times a day to keep her cleaned out. This was quite a challenge since we need someone to hold her while I perform the irrigation. A big thank you to our Pastor's wife Polly and Nanny Austin helping during the day while Daddy was a work.

We headed back to Cinci yesterday for a check-up and talk about the near future. She looks great and is doing great. They were very happy with her progress (especially since we eliminated the ex-lax). We are switching to daily enemas (not the over the counter type). A large volume of saline and glycerin will run in thru a tube over about 10 minutes and then will be held for about 10 minutes. She will then sit on the potty to evacuate all of it (hopefully :). This will only need to be done once a day to keep her colon cleaned out. Something new for Mommy and Daddy to learn...yippee! Keeping her cleaned out and comfortable is the goal, so we will do it.

I wanted to clear up some confusion. We must of not done our part to help everyone understand the outcome of this surgery and what the future holds for Taylor. We knew going into the surgery that this wasn't a simple fix and all will be well forever. The goal of the surgery was to remove the HUGE area of the colon that was collecting all of the stool. Removing this section created a straight shot for the stool to move thru the colon into the rectum. The problem is the remainder is Taylor's colon is still "lazy" - it doesn't have the ability to move the stool thru it. Therefore we knew she would still need to be on a small dose of laxative (with Senna - this is the only product that moves the stool thru the colon. Other products just soften/loosen the stool so it is easier to pass). Unfortunately, Taylor has not been able to tolerate the ex-lax post surgery so enemas are necessary to keep the stool moving thru her.

Daily maintenance will be necessary to protect her colon from becoming dilated like it was before due to chronic constipation. She will need to be very careful all of her life to care for the part of her colon that is left. That means: high fiber diet, no constipating foods, 3 meals a day (no snacks) and daily enemas. Not a pretty picture, but we have to deal with the hand that we were dealt.

So I hope that clears up some questions and confusion.

We head to Cinci on Thursday and Friday with both of the kids. Bryce will be undergoing tests on Thursday to determine if he has the same situation as Taylor. They will both have x-rays on Friday and see the doc. Will keep you posted on what we learn. The tests Bryce needs to endure are uncomfortable and very scary, so please pray for him and Mommy and Daddy and we go thru another trial.

Honestly, we are struggling every day to face these challenges head on, but we continue to lean on God thru it all. We know He is right there with us every step of the way and when we can't walk the path ourselves we know He is carrying us.

"And the God of love and peace will be with you." 2 Corinthians 13:11

More later...

HOME!

Heading out in the next hour!

Final Day??

To catch you up in case you didn't see my status update on FB - we did not go home yesterday. Taylor was vomiting at midnight the night before, so we stayed another day to make sure everything was okay. We think she just had a bit too much to eat (her stomach is still adjusting to solid food). Thankfully we didn't have anymore vomit the remainder of the day.

So, that brings us to today. We already went down for her x-ray. Breakfast is coming. Taylor will probably enjoy some time in the playroom while Mommy showers. Irrigation before lunch. If all goes well....HOME. Of course Mommy needs to pack lots and lots and lots of stuff into the van first.

That is the plan as it stands, so please pray we stay on track.

We are missing our church family so bad this morning - just can't wait to get back to "normal" life.

More later...

Day 17

Here's the good news and the bad news: We can go home tomorrow, but we have to continue to do an irrigation every day. They say this situation should improve over time. Her colon just needs time to get moving and stay moving. It's all trial and error right now.

She is doing a bit better with the eating/drinking and they are hopeful that will improve once she is home and back to a normal routine. We can pray, right?

She will still be on laxatives - approx. 3 a day. The doctor suggested doing 1 1/2 in the morning and 1 1/2 in the evening since she is having such a tough time with them. She is also starting probiotics. This will hopefully introduce more good bacteria back into her colon and help with the horrible gas that she has. We are also taking her off dairy (at little here and there, but not much). She will be so bummed about this. She LOVES milk and most other dairy products. I know there are options out there, but nothing is like real milk products (we've tried several).

So...it sounds like we might be heading toward Lafayette tomorrow if all goes well. Please pray for our family as we readjust to life at home. It is a blessing, but will have some struggles I'm sure. First of all, is getting back to some kind of normal schedule and not having Mommy's attention 24/7. We have been quite spoiled in the hospital, so we will have to find a new balance.
I'm sure Bryce won't have a clue what to do not being bounced around every day and needing to share with sister again. :) Mommy can't wait to have extra snuggle time with him.

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Another Day...

Well, the docs just rounded and told us she needs another irrigation. This procedure scares her so much and is just frustrating for me. Basically, they are having a difficult time jump starting her colon. We are very close - very, very close. We just can't seem to get over the hump.

Pawpaw and Nanny Fink are visiting today and we also had a nice visit from Cousin Julia. We are going to wait until they leave to do the irrigation...no need in upsetting anymore people than necessary.

I think I just shut down mentally on days like today...only so much a person can take.

God always knows what I need to lift me up though. Today I received a link to a song by Avalon titled "Still My God" and it completely fits where I am at right now. Thanks to Pastor Terry and Polly for sharing it.

I also wanted to thank everyone back home that has been pinch hitting for me while I'm away. Watching and loving Bryce, house cleaning, meals, etc. So much to be thankful for.

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Frustration!

That sums it up. I don't even feel like posting but I know many of you are checking in with us daily to see how things are going.

Taylor had a fairly good day of eating and drinking (no where near normal amounts but at least she was interested somewhat). She did one square of ex-lax last night. Today they decided to remove the IV for the day and see how she does. We still didn't have a BM by noon and her x-ray showed a large amount of gas in the upper section of her colon and liquid stool in the lower part that wasn't moving. Her colon just doesn't work! It is very lazy and doesn't move anything thru the way it should. So frustrating!!

The doctor decided it would be a good idea to do irrigations and get that stool out so possibly the gas would move thru. We really need her to eat and drink MORE and they were hoping to get the gas out so she would feel more like doing that.

The irrigations are horrible. She is very scared and cries and screams. They assure me they are not painful, but I cannot stand to see her going thru such invasive procedures. It took 3 people holding her down and the doctor performing the irrigation. I could only hold her hand and tell her it would be over soon. They want me to learn how to do them if they decide to do another tomorrow. I'm not exactly sure how I will do these at home - I don't have enough hands to hold her down and do what I need to do! Oh this path we are on just stinks! I'm trying to be positive and know that it is in her best interest, but that is nearly impossible sometimes.

She is eating some now and finally calmed down. Guess we'll see how the rest of the day goes.

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Rough Day

Taylor had a pretty rough day yesterday. She had severe gas and cramping thru all hours of the night. By late morning she started throwing up and that lasted for 2 hours! She then took a nap for two hours until the docs came in and evaluated her.

Daddy and Bryce arrived when she was throwing up so she couldn't even enjoy their arrival - bummer! She actually missed about half of their visit while she was getting sick and then sleeping. I was so sad for her. They did put her back on the IV fluids (they had only been giving them at night) so this helped her perk up a bit by mid afternoon. At that point she was able to enjoy having the boys here.

She and Daddy worked a puzzle and played. By late afternoon she even felt like getting out for a couple of walks. On her first walk she pushed bear in the stroller, but by her second walk she pushed Bryce in the stroller - so cute! Bryce loved being with big sister again. He wanted to love on her all day - even when she didn't feel like it. At one point when she was throwing up he reached over and patted her on the back. Such a sweet boy!

She started having some cramping at bedtime, but it was not enough to effect her sleep - thank the Lord! She slept really well last night. We always are awakened by nurses checking pumps or taking vitals, but thankfully she was able to fall right back to sleep.

The docs rounded about 7:30 and want another x-ray. We will be heading down for that at anytime. They will keep her on the IV fluids again today and let her start eating and drinking again. We are not pushing it though. They will continue to keep her off the Flagyl - this med could have caused the vomiting.

Thanks for prayers...

Prayer Request

Here are the list of concerns at this point:

The gas and cramping is still a big issue.

Needs to eat and drink A LOT more (she was put back on IV fluids tonight).

Being able to take all meds - especially the ex-lax.

Lots of "threats" by the doctor - paths that we really don't want to go down. Reinserting the
NG tube down her nose to administer meds if she can't/won't take them. Tube in her rectum to relieve the gas if she can't pass it. Etc., etc.

Thank you all for continuing to pray for Taylor's complete healing. God is good and He will see us thru this.

More later...

Pain and more pain...

Still a lot of gas and now we are having pain in our left kidney area. Possible UTI?? They are checking into it. She is not drinking much so she is setting herself up for one. Still not eating enough either - talked about putting her back on TPN - uggh. They said they would wait and see how the day goes.

I told Daddy not to come today because I was thinking we were on our way out of here - I think that was a mistake.

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No Restrictions - No Appetite

Well, she can have anything she wants (as long as it's not constipating) and she barely has an appetite. They say it's normal. We can't really gauge how well her colon is going to respond until she gets more food in there. So - we wait....

I'm not so good at waiting, so this is a good test from the Lord :)

I received the perfect scripture attached to an email devotion today:

"Be still and know that I am GOD..." Psalm 46:10

I keep repeating to myself "be still, be still, be still..."

More later...

Food!

They just gave us the go ahead. Let's pray that her colon handles it well.

More later...

Waiting...

We are waiting to hear what the x-ray images show from this morning. Then we will know if she can start on real food. She hasn't been that interested in her clears yet. Just some jello, Sprite and water so far. I'm going to talk with her nurse and see if that is normal for this stage.

Taylor and I are both in moods today. I think we feed off of each other. She spent some time in the playroom and I got a little breakfast. I was hoping the break would do both of us good, but when I arrived back in the playroom there was a little trouble. There is another 4 year old girl that she enjoys playing with, but sometimes they have a hard time sharing. Too many princesses for one playroom :) So, we headed back to our room with some movies to watch and just relax for a while. Hopefully we can recharge our batteries.

I posted these pics on Facebook the other day, but had trouble with blogger. So I will try again to share them. Enjoy!
Keeping our "lips" on is most important in the hospital. Actually things are so dry that her lips have peeled twice since we have been here even though we have kept something on them constantly.

Mail time! We really enjoyed getting 22 cards on Wednesday! What a nice treat.

Taylor's first Build-A-Bear! This cute pink teddy was sent from my cousin Sonda and family in Chicago. Thanks for such a special delivery! :)

Dr. Taylor takes very good care of the babies in the playroom. She said she might want to be a doctor someday - wow!

Paging Dr. Taylor - is Dr. Taylor in the house?!

Many, many special paintings have been created by Taylor since we have come to stay. Our room is just beautiful with all of her masterpieces!

Mommy and Taylor playing Dora dollhouse. Did you know that hats should be a requirement for Mommy's staying in the hospital. A shower doesn't happen everyday so they cover bedhead quite nicely. :)

Playing Dora dollhouse - one of her favorite things in the playroom.

That's all for now.

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Bring On The Drinks!

Just saw the docs - things are looking good so bring on the liquids! We are happy campers! Her x-ray from this morning does show a significant amount of gas. We will do clears for a day and see how that goes. If all is well we will start on food tomorrow.

Praise God for carrying us thru this journey...we are on our way!

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Night Owl

Do you remember that Taylor didn't fall asleep until 10:30 last night?? Well I thought we were on track for an early bedtime tonight. Taylor started winding down around 6:00 and started nodding off. She feel asleep around 6:30 and I was hopeful that was it for the night. NOPE! She woke up around 7:30 and has been a live wire ever since.....uggh!

Good news though. She was removed from the pain pump today and we haven't needed to push any pain meds thru her PICC, so that is good. One less tube and pump is always a good thing. This also means she doesn't have to wear the monitors anymore so no more alarms in the middle of the night. Well, there are alarms on her other pumps but they rarely go off at night.

She also started taking her Ditropan by mouth today and they removed the patch. We were told the Ditropan usually works better orally, so we pray there will be big improvements with the bladder spasms by tomorrow.

That's about all I can think of tonight. My brain is ready to shut down for the night. We have made it half way - day 5! Praying we can make it 5 more - then we will start introducing clear liquids. Hooray. We could also pray that Dr. Pena decides to try liquids earlier - one can hope right?!

Leaning on Him....

Long Day

It's been a long day and I'm exhausted, so this will be short. Taylor is doing good overall. They removed the cath today so that is a big praise. Our biggest problem right now is that she is having severe bladder spasms which are very painful. They are giving her the med thru a patch. Hoping with being back on the meds and getting the cath out will calm things down. We'll see what tomorrow brings.

She is walking everywhere now when she is out of the room - no more wheelchair. She has enjoyed time in the playroom - a really neat place. I will post pics soon. She also played BINGO tonight (for the first time ever) and won a great prize. It is a set of My Little Pony books. She was excited.

Well, it's 10:30 and Princess Taylor is not asleep yet. I'm going to turn in and hopefully she will follow - at least until they come in to mess with her IV's or take her vitals, etc. Not much sleep in the hospital.

Hope everyone endured the storms back home - we haven't gotten anything here yet. Btw, Taylor rec'd 11 cards today - what a great treat! We both needed the words of encouragement! Thanks to all who have been thinking of her and praying for her. We feel the Lord carrying us along.

Love to all
More later...