Fontan Update Day 10

Hi Everyone,
Sorry that I did not post yesterday but wow..! Lilly's lab and x-ray went awesome Thursday ans they decided (with Lilly's help) to let us come home. Yes, I said it...HOME! We got here around 6pm, just in time to surprise Dylan. He was so surprised!
So, for the first day home we were kind of lazy. Her and I stayed cuddled on the couch until 10 this morning. It was great! She has developed an attachment and has not wanted me to leave her sight for a minute. Paul shot a deer tonight and both kids were going to stay at my brothers while we went to look for it. She cried so hard, it made me feel bad. Needless to say, we never found the deer. But, I am worried how long she will be scared to leave me.
With the low-cal diet, yeah... let me just say "crazy". She has been living on high fat everything. I was the mom that walked through the store checking labels for the highest fat and calorie count and she got used to it, not to mention she could eat whatever she wanted (granted candy and soda were treats) anytime she wanted. Now, I have to tell her what she can't have, I think that is the hardest part.
Overall she seems to be loving being home with Daddy and Dylan although she is so tired. Her O2 has been in the high 70's- low 80's and she takes a lot of naps and a lot of breaks. I guess as the weeks go by she will be back to her normal self but now, I am just glad to see her smiling again!
We have a Warfarin/Cumadin blood check Monday and a Post-op with Dr. Dietz in Marshfield on Wednesday of next week. Talk to you soon. Hugs and Love,
Mommy, Lilly, Daddy and Dylan

Fontan Day 8

All things are going as expected for Lilly. Yesterday we had her up and walking for most of the day. By mid-afternoon her stats had dropped and we needed to go back on oxygen through the night. Last might we also tried Roxiset (kind of like Tylenol with Codeine) to help Lilly sleep and it worked wonderful! She finally got a full night sleep and woke up in a happy, cheerful mood.
On rounds we decided that Lilly needed a day off. She did not need to do an x-ray or and blood draws today (YAY). We took her off oxygen again and the goal was to keep her off for the day. PT came and we walked up half a flight of stairs and down to the cafeteria for lunch before she started to get tired. After a nap her blood pressure seemed to drop a little so we limited walking around. Dr. Sadock (Cardiologist on the floor) thinks that we will need to adjust her Lasix tomorrow when we look at her x-ray.
If we can keep her off the oxygen and fix her meds, they said that possibly Friday we may be able to go H (you never say the word until you walk out of the hospital, not even the doctors say it). We may leave with oxygen, just as a precaution if her stats don't stay up tonight.
Other than that we are giving her the first shower she has had in over a week later tonight.
P.S. It has been a crazy week both here and back home and we may need some extra prayers sent out. I met a beautiful 2 year old boy this morning named Jake who was diagnosed in July with Cancer. He is here getting a chemo treatment and got a bladder infection as well. Please pray for him and his parents for the strength and hope. Also my grandmother Donna, who has just gone into remission a few weeks ago fell. We found out that she has a hairline fracture on her spine. Please pray for a full recovery. Thank you to all who pray for us as well!

Fontan Day 6....I think.

I forgot how the days seem to blend together when you are here at Children's. It seems like we have been here for a month at least and it has been less than a week. Yesterday Lilly seemed to be "Done". She wanted to go home and be out of here so bad. She is starting to get mad at the world.

We have had to go up and down on the O2 from .5 L to 2L currently we are sitting around 1L and have been hovering around the upper 80's for her oxygen stats.

Lilly actually gained weight a little from yesterday, she was at 10.3kg (22.7lbs)and we are at 10.4kg  (22.9lbs)today, surprising as she really hasn't eaten much.

She has learned, because she is too smart, that the people that come in in the blue long coats (lab coats) are not fun and can not be trusted. She can be such a drama queen and often screams at them when they walk in. It actually is kind of funny.

She is still struggling to move around too much and mostly begs to be held. It breaks my heart that I need to tell her "no" so much this trip here. "No, you can't have peanut butter toast", "No, I can't carry you all the time", I find myself laughing to keep away the tears sometimes.

I do feel very blessed to be here at CHW, I know that both her and I are in the best hands possible and they are doing everything in their power to get us home quickly and safely. Besides, I know which strings to pull to get the result that I want and my voice and opinion heard.

Fonatn Update

Happy saturday everyone. Yesterday afternoon we were moved up to East 8. The view is nice and we don't get bothered as much by the nurses. She is in room E875 and loving the fact that Mom and Dad can lay with her in bed.


Lilly had an exciting morning today; she had her other two chest tubes taken out along with her pacer wires. Dr. Mike from CV Surgery is the sweetest, he enjoys letting Lilly know what is going on at all times. Now with them gone, she looked at her "Friend" Dr. Mike and said, "I'm free!"   I am not sure if I care too much for the Cardiologist on this floor but... he thinks that she needs to stay until Tuesday. I don't want to rust her into letting her come home, however, I think that three days is a little overkill. We will see on the X-ray tomorrow and maybe it can be sooner.   We were able to leave the room and see the fish tank on the 1st floor and she was able to pick out her own movies. The Child Life lady on W3 make Lilly a sticker chart. Every time she accomplishes something like, a tube comes out, she stands, or walks, she gets a sticker. Every 10 stickers she gets a prize. She picked out a princess doll today! The sticker chart is really helping to motivate her to move around. She is slow going but everything helps.    Right now we are on room air and have been anywhere from 75 to 85 O2. Yeah that is a big difference but what can you do? Thank you to everyone for all of the prayers and we look forward to coming home soon.

Fontan Day Day 4

Lilly had a great night! She was able to get some much needed sleep and only woke up once at 3 AM. Then all of a sudden at 9 am I had to make my first plea and demand to the nurses and doctors. Her Foley Catheter was leaking and she was screaming when she urinated. The nurses that are here are newer and thought that because we are in a study (to see about kidney function with cardiac patients) they did not want to take out the Foley. I, of course, ran down the hall and found any doctor that would listen and demanded that the nurses take it out NOW! When they finally agreed I sat and cried, holding her hand while it was removed. Until Lilly looked at me with tears in her eyes and said, "Its okay Mom, they're all done". I couldn't help but laugh.


On another note, we have decided that the two remaining chest tubes will be divided to see which one is still draining. The Central line and left PIC line will be removed today as we are now off all IV medications and have been for 24 hours.

I am hoping that by tomorrow we will learn how to address the chest tubes. I have relived over the last few days how miraculous my little girl is. She has the heart of a soldier and feels the pain in others like an angel. She is one of a kind and will always be. There are so many things that Lillyann is and every one of them show how brave and kind she is.

This was taken yesterday afternoon.



Fontan update!!

The day after the Fontan was very difficult. Lilly was sedated but would only sleep for an hour at a time. It was hard to watch! She would wake up and talk (somewhat) to whoever was close. She told us that she wanted to be held quite a bit, which was really hard to tell her "no". I forgot the pain it causes to see your child in pain and not be able to help.
Her Epinepherine (a med that keeps her heart rate up) has been weaned completely off along with her Dexmedetomidine (a sedation medication) and now she is awake most of the time but has trouble falling to sleep. Although she is finally sleeping now!
Dr. Micheal said that we will be weaned off the Milrinone (a medication to help the heart squeeze better) as we are down to 0.6 mL now. We are also on Spironlactone. She had been on this Lasix drug in the past and will help 'take off fluid' or help her 'dry out'. We started her on oral medication today when before it was via IV.
About 20 minutes ago Dr. Micheal came in and gave Lilly some Versed (sedation med) to pull two chest tubes. She was awake and kept telling Dr. Micheal that he was doing a great job and actually did better when she was seeing what he was doing.
Nurse Jenny then was able to pull her ART line (IV) and once we get off the Milrinone we can get her Central IV out.
She has been on an ice and water diet and after the ART line came out Nurse Jenny allowed her a little treat of a sip of my white chocolate frappe. Now I will need to get Lilly her own as soon as she can eat because she liked it so much!
This morning has been a great day already, even if the weather is gloomy today.

Fontan Complete!!!

As of 6:30 pm Lillyann is out of surgery. She has been doing great and is back in her room on W3. We are in 323, which is one of our friends old rooms. tonight has been hard for all of us as we are trying to make her comfortable.
As usual, the sedation wears off quicker than expected and she had already tried to sit up on her way to her room after surgery. The doctors and nurses are being very helpful with monitoring her every mumble. We have Melissa tonight and she has not left the room since our return.
Paul is relating to her as he was right where she is about nine months ago. Which makes it harder on him to relive all of his pain as he sees it in her.
It is difficult to tell your child "No" when all she wants is a drink of water and she can't. Talk about heart breaking.
Any who, Dr. Tweddell thinks that everything looks good and said that, as usual, the next couple nights will be hard.
She is on seven medications and some Platelets for now and hopefully soon we will be back down to our two (wishful thinking).

Fantan Update

Bridgette, Dr. Tweddell's nurse, came out and updated that they are done with the procedure! They are going to start patching up and waiting to make sure there is no extra bleeding. We have another hour and a half before we get the word form Jim Tweddell so we wait some more. He did not feel like making the pulmonary artery bigger was necessary so it was not done. He finished her valve and we will see in a few days if it has improved.
Overall good so far and looking forward to the end of a long surgery day!

Fontan Surgery Day

Well, the day has come and Lilly was taken back to the OR at 11am. The last update that we got was that they were still preparing her for surgery and 'opening her up'.
Last night was eventful! She did her MRI and we found that her Left pulmanary artery is smaller than normal and will be added to the "TO DO" list for Dr. Tweddell. She woke up afterwards and wanted peanut better toast and coffee at 6pm and again at 10pm. It is amazing how funny everyone thinks that is because that is just one of her strange eatting habits we have handled for the last two years.
She made her Courage Bead necklace provided by Wings of Endowment, and had a blast placing each one on. They are beautiful and a great keepsake for her to see all that sh has accomplished.
I made that mistake to tell Lilly taht all of her nurses were her friends and were going to stay up with her at night and play. Needless to say, she took it seriously and was up until around 11pm.
She in some what crabby but can you blame her!?
I will update as soon as I hear more news. Prayers be with her today!

Fontan less than a week away

With Lilly's Fontan pre-op on Monday the 10th, things are starting to finally sink-in. We are hopeful and nervous waiting for the day to come. Lilly was going to be 1st case Tuesday the 11th but has already been pushed back to 2nd. As always this can be frustrating, but we know that another kiddo is needing something before Lilly. We are hoping that we can take her out for a good supper and activity after the pre-op so she can be exhausted on surgery day.
We are still running around the 78-80 O2 Stat which hasn't changed. Her spirits are high and Dylan is really supportive. He was bragging to her that this will be her last surgery before the doctors have her all-fixed-up like daddy.
I don't even think there is a fear or doubt in her mind right now so we hide ours. I will be sure to post more over the next few weeks until Lilly is back to her normal (driving us crazy) self.