Kailey Rose

a long few months

Michelle — Thu, 06 Aug 2009 13:58:43 +0000

This summer vacation seems to have flown by. Kailey’s ordeal started in May with the Cardiac catheterization, followed shortly by her surgery on her bladder and bowel.

Her recovery has been full of ups and downs. We had a hard time at first, it seemed as if her tubes and drains were getting blocked left and right. Once they all came out we dealt with blood clots blocking both her urethra and her mitroff opening. Luckily they dislodged on their own, and it has been smooth sailing from there.

Here we are a few days away from the start of school, and although she weighs a little less and may be a bit weaker than she was before, Kailey is her same old self. She is ready to start school, as are her brothers! She is getting around like a champ, and she is gaining her strength every day.

Thank you all for checking in on her. Your thoughts and prayers are much appreciated.

we love you all!
Michelle

exhausting and unreal

Michelle — Fri, 12 Jun 2009 05:12:59 +0000

Kailey is home, and we are thrilled. Her care is extensive and keeping her entertained is exhausting. But she is happy to be home, and seems to be in little to no pain.

She has asked that tomorrow we go to the mall, so we will break out the double stroller most comfy for her (I assume the peg) and off we will go to the mall for a walk and a trip to the food court. In Kailey’s word, the food court of any mall is as exciting as disney land! that girl loves her food!

great day, long night

Michelle — Mon, 08 Jun 2009 08:36:50 +0000

After I left Kailey yesterday, she had a wonderful day with her daddy! She was up playing games, watching movies, smiling and laughing. She went the whole day med free.

Unfortunately around 8 pm that came to a screeching hault! She started with the nausea, then the pain from sitting up and jerking around. By ten she had had morphine, zofran and phenegren for the vomiting. She was in so much pain that none of that knocked her out. She has been in a restless sleep since about 12 am.

The bright side is that she can have a good day~ and I sincerely hope today will follow yesterday afternoon.

I write this at 4:30 am because Kai keeps waking me up and saying ” uh uh, you don’t sleep! You watch me!” Its okay though, I had some entertainment when I snuck down to the ER to visit my friend Alison, who gave me the grand tour of the brand new ER here are Egleston.

Now I am off with hopes of some sleep. Be well all, and keep praying!

nausea, pain, miserable girl

Michelle — Sun, 07 Jun 2009 11:10:08 +0000

Please say a prayer that Kailey finds some comfort today. We have changed her meds once and went back to the original after a while. She has been nauseous and sick and we aren;t sure why. Her tummy hurts from the surgery sight so she is in a lot of pain. Nothing seems to be smooth for the poor girl this week. Please keep her in your thoughts.

healing and waiting

Michelle — Sat, 06 Jun 2009 21:36:39 +0000

It seems to me that the morphine is making her sick to her stomach. I don’t usually allow them to keep her on morphine this long, while it seems to work for the pain, the sea sick feeling she has is not so great.

While she sleeps and heals I am typing from my brand new lap top that my hubby got me (thanks babe) and that my wonderful sister set up for me with antivirus and video cam (THANKS SUZE). I am happily typing away while trying to get my finger tips use to the key board. It feels so odd!

Continue to pray for a speedy recovery! We are well on our way! I just need to end the morphine for her soon.

NIght 1

Michelle — Sat, 06 Jun 2009 11:14:28 +0000

Kailey sl ept fairly well last night. She woke a few times and asked to be sat up a bit, or laid down more. Her tmmmy hurts, but she is a trooper and doesn’t complain much. She is on morphine every few hours for the pain and so far that is doing the trick.

Continue to keep her in your prayers for a speedy recovery.

out of surgery

Michelle — Fri, 05 Jun 2009 23:51:59 +0000

Well after 8 hours, Kailey is safely in her room recovering from surgery!! It went really well and her bladder didn’t need to be augmented after all. So thats one less procedure to heal from.

The urologist feels that on their end, she will be ready to come home Monday. From a cardiology standpoint possibly a few more days. Either way, thats a whole lot sooner than we thought she was going to come home.

We are wiped out, but happily on the recovery end!! Life is good. Thank you all for your thoughts and prayers.

Here we are

Michelle — Thu, 04 Jun 2009 14:22:08 +0000

We arrived at the hospital yesterday, with Kailey in great spirits. She was actually happy to be coming here. As the night went on it got a little difficult, but a tear was not shed. Kailey was stuck in the arm 6 times in an attempt to get an IV in. It was so hard to watch. She was up well past her normal bedtime, and then as usual woken up through out the night. We are all tired this morning.

We spoke to the urologist last night and he told us that it is not unusual for this surgery to last up to 15 hours. Best case senario would be 5 hours. So lets see thats ummm a TEN HOUR swing! HOLY CRAPOLY! Somebody sedate me now!

For those in our area, we are at Egleston, in room 2139.

Please keep us in your thoughts and prayers as tomorrow is sure to be a VERY difficult day.

Love to you all,
Michelle

June 1st

Michelle — Mon, 01 Jun 2009 13:43:58 +0000

Ahh I have been dreading the month of June because I know that the majority of it will be spent looking out of a hospital room window. But here we are, and today we are heading out to the movies with the boys. My sister has spoiled us rotten over the past 3 days, and it has been wonderful.

Kailey has a new doll that was made to look just like her. She loves her, and so does everybody who sees the doll and Kailey together! Amazing!

We had our day of beauty and Kailey was the Queen of the day. Then Sunday we went to the Aquarium, where I think my darling husband really enjoyed himself. Those Beluga whales are a sight to be seen. They are simply majestic.

We will be admitted to the hospital on Wednesday. Kailey should be a total nightmare those first few days. No food, and an NG tube of laxative. oh yay. Thank God the hospital has lots to do to distract her, and THANK GOD Suzanne with be with me to distract me!

Friday will be a trying day for us all, as the surgery will be long and extensive. Its funny how when we are the most tense we tend to giggle and laugh. I’m sure the staff will think we have lost our minds as we play poker, and rummy, scrabble and we laugh till we cry.

I can not wait to be on the recovery end of this surgery. To know that Kailey will be okay. To know that it is behind us and once again we did the best thing for our daughter. Up until then, I will be pacing the halls and climbing the walls, all the while masking it with fun and games.

thank you all for your love and support, prayer s and positive thoughts.

Michelle

The count down

Michelle — Wed, 27 May 2009 10:36:15 +0000

So here I sit, counting down the days until my sister arrives. We are so looking forward to fun fun fun, and yet right on the heels of all of this upcoming fun is Kailey’s surgery.

A day of beauty is SOOO what I need, and Kailey will love being pampered. There is really nothing she loves more than having her hair done, and she will have a mani/pedi as well. WOOHOO. Girl power!

Dwelling behind the excitement is fear and projecting, assuming, guessing. I worry about how she will do during the surgery. I assume that her recovery will be difficult and that her meds will be pretty heavy duty. I project what methadone treatments will be like for a six year old vs a 3 month old (the last time she had to go through them). I say methadone treatments because Kailey gets addicted to the morphine or the fentenyl that they give her. After heart surgeries I have been able to get them to take her off of it after one day. But this surgery is so extensive that I imagine it will be impossible to take her from morphine after only a day, and so I worry about the addiction.

To see a baby “jonesing” for some meds is heart breaking. So see them shake and have a hard time of it is like noting I ever want to see again. But now I fear I will have to see it happen again… and this time she can talk and remember.

It would be wonderful if these things don’t happen! I just can’t help but imagine them.

So here I sit, waking up at 5 am every day because of the thoughts haunting me at night. Because of the excitment surrounding my sister’s visit. Because of the fear of handing her over for a surgery that is voluntary and not medically necessary. Because out past haunts our future, and the reality of it makes me feel ill.

A week from now we will be in the hospital. We will be doing the colon cleanse and suffering the blow outs of go litely. BLECH. A week from now I am sure to be on here laughing about how the stink is KILLING my sister. LMAO. A week from Friday I will be here begging you all to pray harder than you have ever prayed before. A week from Saturday we will be on the recovery end of things, and no matter what that brings, it will be a relief from where we stand right now.