1st follow up at Children's

Payton had her first follow up at Children's. We had to take an xray & have some blood drawn. The xray was to check her lungs to see if there was any fluid in there & the blood work was to check her Potassium levels (which were down while in the hospital) & to see if the blood thinner is keeping her blood at a certain level. We then had to go up & be seen by the Nurse Practioner.

Results.....

Xray was not as clear as when we were in the hospital, which is not uncommon but is something that is going to be watched very closely. We are upping the dose of diuretics & hope to see a change by Friday when her next xray will be taken. If it does not get better than we will be admitted into the hospital so that she can receive her meds thru an IV, apparently IV diuretics work better & faster than the ones taken by mouth.

Blood Work - Her potassium was perfect, which was good because they had her take Potassium Chloride by mouth & it was N.A.S.T.Y!!! The other level they were checking was a little low so they are going to up her dose of Coumidin (sp? a blood thinner). Her blood levels will be rechecked on Monday to make sure that she is on the right dose & it doesn't need to be adjusted again.

All in all she did well at the hospital. After talking with a good friend (who's a Dr.) about some concerns that I have... have you ever noticed that you never have questions or concerns until after business hours?!?! Why is that? Anyway the symptoms that I described were from her having fluid in her lungs, which we already know... so I should sleep better having spoken to him. And if things change I will be more aware & notice it.

As if Payton weren't tortured enough tomorrow I am taking her to get her RSV shot. Either before or after we will be going to Dr. Burkes office to check her oxygen levels. If they go down then that is a sign of more fluid, if they are the same or higher than that is of course better.

The good news for the day is that she didn't have an all out screaming fit when I gave her her meds at dinner. I'm hoping that it is not a fluke & she will be better from now on. Payton is also back to her old self, which is the best sign of all. Even with the added worrying I am still glad that she is home & that we have resources that we can call on.... I am so grateful.

Above was her last night in recovery. It's amazing how she was able to find a way to be comfortable in that bed with her arm taped to a board & all of her oweys....

It is so nice to have her home. Before her bath she wasn't really all that aware of her chest until she saw it during her bath. She didn't allow us to wash it so I just poured water down her front & washed everything else. She went to bed a little somber & sad... but woke in a better mood with more smiles through out the day.

I can tell that she is so happy to be home. She doesn't like to take her medicine. It's actually a battle to get her to take anything from a srynge but it's nessecary. She came home on a low fat diet & a lot of different meds to make her pee. We've been told that if we don't follow the plan (especially the low fat diet) that she could easily end up back in the hospital. Their concern is that she might get some fluid accumulation in her lungs. So I have to find something else to bribe her with since fries are definitely not on the menu for at least 6 to 8 weeks!

We're Home

Yes it is true... we are home. Payton is fast asleep & we are exhausted! I'll post some pictures tomorrow.

We are so grateful for all of you that have stood with us, both in person & in spirit. I cannot believe that she is home & know it is because of the Lord hearing your thoughts & prayers. Thank you so much for the meals & the calls.

Finally a good nights sleep! We're Home!!!

Recovery! :) but then again :(

Payton xrays looked great this morning. They cleared up significantly they are talking about pulling out the left chest tube. As of 2pm when I left, for some away time (this is Jenn) they weren't sure if they would have time for it or not (it seemed like a very 'busy' day in the ICU).

Payton ate a full lunch (Payton standards) but no breakfast. I was able to get her to sit up but then they brought another baby back from surgery so we had to clear out. I expect that she will do the same thing that she did last night & be much more anxious to get up & move around after dinner.

When the chest tube on the right comes out then we will go home. They said that there is minimal drainage in the right tube but we just need to see if that stays the same when she gets up & moves around.

She is so brave! She has been better than I could have ever hoped... she is enduring well. She talks about seeing Christmas lights & I hope that I will be able to take her downstairs soon to show her the lights they have in the garden at night. I can't wait to get her home but am prepared to stay until she's ready. We have been given a 7 to 10 day recovery time so 5 days into it & they are giving her praises every day for the progress she's making... maybe it'll be closer to 7 days! We'll see. I know that Donald is thinking Sunday... but I'm thinking more Monday or Tuesday. I'd be glad to be proven wrong though!

The rest of the story....

When I walked in tonight after work around 6pm, one of the first things that I did was send Jenn out to go and eat dinner that one of the ward members had prepared for us, that I had brought. Then while Mommy was gone to eat I got out the bubbles that I brought her yesterday and I started blowing the bubbles and Payton started popping them with her hands, and I heard her first giggles and saw her first smiles since she arrived from surgery. It was quite a heart warming event for me, at the same time hoping that the partial laughs weren't painful, and they didn't seem to be. Then, dinner that Jenn had ordered for Payton had arrived, it was eggs and toast. I look at it and then at Payton and she says in a cute squeaky voice "eggs" and I then she ends up eating half an order of eggs and a few bites of toast and the Dr's and Nurses were very pleased. They said she was showing off for Daddy, but we will take it however we can get it.

One of the comments that Jenn has said that one of the surgeon's (Dr. Wells) had mentioned tonight during their nightly rounds, was that "Payton is going everything we want her to do except eat." Jenn says, well it is tough to get her to eat much at home normally. The Dr. replied to her "We have standards around here and if kids don't met them, then we lower them" Jenn said it was half in just and half truth.

We had a great nurse today, Rosie. Just before shift change to the night nurse Rosie got Payton to sit up and she was able to pat her back and get her to move around a little. (this is to help the drainage around the lungs, the X-Ray from this morning showed a lot of liquid around them and there was hardly any drainage all day today) Payton performed beautifully for Rosie by sitting up, and drained quite a bit after that episode. Then during shift change they kick us out for about 30-40 min. While during that break we met a couple that just found out that one of their 4 yr old twins has Leukemia and after chatting it turns out that they are friends of a friend, so it was very nice to visit with them for a little while. Then, shortly after coming back the new nurse asked Payton if she wanted to sit in the chair and she nodded and said yes, so Jenn got her up and sat her on Jenn's lap, then Jenn asked her if she wanted to stand up, to which she agreed. After standing for just a few minutes, all of which was very painful we could tell, we got tons of drainage!! :) So all in all Payton is now crossing some very critical milestones of starting to eat and then being up and moving around to really get that liquid out from around her lungs. The Dr's during the morning's rounds will be very pleased and they will most likely give some important information, maybe a time frame for going home, I am only speculating, but what ever it is it will be good news I am sure.

So....tune in next time for another great update. Same Payton Blog....etc, etc, etc!!

Thank you for all of you that are remembering Payton in your prayers, they are hard at work, she is doing tremendous. The miracle is happening right before my eyes, and it is directly tied to your fasting and faithful prayers. Please know that they are so greatly appreciated. We love the Lord for blessing us with Payton and the opportunity we all have to show our Heavenly Father our faith as we plead with him for his healing hands to be placed upon Payton at this time. A little girl that has touched so many peoples lives. Some family members, some friends, some of which have only briefly met her and some not ever even seeing her in person, yet their lives have been touched, many reading this blog right now. Know that we love you and are so grateful for your prayers and concerns.

Wow!! This post has turned into a super long one, hope everyone enjoyed.

Feeling Better

Payton has been doing SO good, and she is starting to feel alot better now and show her true sweet self. Here are some pictures of Payton from today, that I think everyone will truly enjoy and take pleasure in. Also, I think that one or two that even have a smile, it looks like a painful smiles but whe was happy while giving them (even if through the pain).

This is her lounging as she watches spongebob square pants.

Rosie, the nurse was kind enough to take a little family photo

I was so lucky to caught Payton with a smile

She really enjoyed playing with the bubbles, here is another smile!! :)

This is her popping the bubbles with her hand and club.

Day 4- Eat Payton Eat!

Payton is still in the CTICU tonight. Jennifer said it this way; “There is no room in the Inn, so they are still staying at the Hilton.” The recovery floor is full, so Payton has to stay in the CTICU. Basically the difference is, in the CTICU there is always a nurse in the room where as in recovery there isn’t. So, while she’s in the CTICU Jennifer can sleep in the parent’s lounge and take a break without leaving Payton alone. Once she goes to recovery Jennifer is on duty for 24 hours, because she will not be left alone. They are still saying that she might be able to go to recovery tomorrow, but we’ve heard that before so we’ll wait and see.

Her central line is out and there hasn’t been any drainage from her 2 remaining chest tubes. But that doesn’t mean a whole lot at the moment because she still isn’t eating very much and isn’t moving around. She sat up for about 10-15 minutes this morning and they should be getting her up and moving around again shortly. Payton doesn’t like to move around, but unfortunately it is something that is necessary to help her come home.

So, once Payton is eating well (by Payton’s standards or by the doctor’s standards has yet to be determined) and is moving around and there is no drainage from her chest tubes they can go home. So we need prayers for Payton to eat! Until tomorrow.

Aunt Melissa

Day 3- Recovery Here We Come

They have been given the all clear to go to recovery. They are just waiting for a bed to free up before they move her, which will probably be tomorrow morning sometime.

They took out 1 chest tube (which Jennifer stayed in the room for to help keep Payton calm), the arterial line and the pace maker wires. Payton stood up a little today (supported) and took a few baby steps but she didn't like it and wanted to sit back down. She was awake the whole morning and then slept from 12:00-4:00pm.

Granddaddy, Nana, and Bumpa were able to visit tonight, she was very happy to see them and very sad to see them go. There can only be 2 people in with her at a time and when Granddaddy left Payton cried. Her night nurse (who has been her nurse every night so far) heard her and told Payton "It's OK, your friend is here (meaning herself), you can go to sleep now." And she did. Jennifer will be sad to leave this nurse when they go to recovery. :)

Our prayer request right now is for Payton to eat and that the transfer to the recovery floor goes smoothly! She is such a little trooper.

Aunt Melissa

Day 3

Payton had a good night last night, she slept through the night. When Jennifer joined her (from the parents lounge) at 6:30am the nurse said that she had been up for about an hour, and had been a good girl. At one point she wanted to get the nurses attention to get something for her so she just yelled, “Hey!” She was awake all morning, and has eaten a whole piece of toast. She’s also been watching her new favorite show “Super Why.”

They will be taking out the arterial line in her groin soon, once that’s out she’ll be able to walk around (she wants to get up but can’t due to this line). They will also be taking out the central chest tube soon (the one draining from her heart). The tubes from the lungs have been draining into the same container, so they are going to separate those and monitor their output individually and see if the one from the left lung can come out soon too. The last item they are looking to remove today are the pace maker wires.

So, if all these things happen then they should be able to move up to recovery later tonight or tomorrow.

Payton slept most of the day yesterday; she was only awake for 2 or 3 minutes at a time. At one point she was talking in her sleep. She kept saying “big house,” “sno-bad,” (snowman) and “lights.” At least she was having good dreams about big houses decorated in Christmas light and snowman.

My Mom is planning on getting to the hospital between 3:30-4:00pm, so I will probably get another update them. F.Y.I. Donald is the one who posted the pictures, just is case you didn't figure it out. :)

Aunt Melissa

Updated Pics from the ICU

Here are a few pics that are from the hospital. I am not much for posting, I think this is my first time posting on a blog. She is doing really good they are tossing around the idea of leaving the ICU and going upstairs to the recovery floor tomorrow night....man that is quick. But we will see, I hope you enjoy the pics of our little Princess!!





In the last picture you can really see the good coloring in her hands. She is still on oxygen, but it is quite pink, no little traces of blue or purple, YEAH!! :)

Thank you for all your Prayers and support, and for checking in on us (well actually Payton). And if you ever questioned if miracles happen today look no further!! Her success and quickness in recovery, thus far, is directly due to those friends and loved ones that have been fervently pleading with the Lord on her behalf. So again I thank you for your efforts and you know who you are and we love you!!

Day 2

Payton had a good night last night. She didn’t sleep as soundly as they had hoped. She woke up every 5-15 minutes would say something and go back to sleep. Jennifer slept in a room in the parent’s lounge from about 10:30pm-6:00am. Donald stayed with Payton until about midnight.

Her first words to Jenn and Donald were “off”, she wanted to take off the oxygen mask. Then a little while later she said “ham”, “cheese”, which is a good sign that she actually wants food. They want to have her start sitting up today at about noon and when that happens she can go on a liquid diet (apple juice, jello, etc.). She’s been sipping water and eating ice chips since about 7:00am.

The pace maker had to turn on last night and again his morning because her heart rate slowed down but that was to be expected. She also needed some plasma and blood, but again this is nothing that they weren’t expecting. They are replacing what she is losing through the chest tubes. One of the chest tubes should come out maybe tonight, but probably tomorrow.

Because she has been doing so well they decided to try turning down her oxygen from 4 liters to 2 liters, but her blood gas dropped into the 60s, to they turned it back up. Again, nothing to worry about she is recovering as expected. She doesn’t like the nasal cannula for her oxygen, but when given the choice between the mask and the cannula, she chose the cannula.

Payton is currently in a regular hospital bed but they will be changing that out for a crib so that she can move around a little more. Then Jennifer will be able to hold her while they make that change. They are keeping her on a constant pain regiment but are going to wean her off of the morphine and onto other pain killers.

Jennifer is most nervous about Payton dislodging the chest tubes, but the doctors assured her that they are securely attached and as long as Payton doesn’t step on them (which is VERY unlikely) they won’t come out. (They still make her nervous.)

Payton is sleeping right now. My Mom is there and got teary eyed when she saw how pink she was. I’m getting anxious for pictures as, I am sure, are you, so hopefully we will remedy that later today.

Payton is working her charm (and curls) on the doctors. One doctor said “We can’t take any short cuts because of her good looks.” While the other doctor said, “Awww, she’s already got me.” They are anxious to see her hair without the bed head. :)

Jennifer wanted me to share the following conversation that I had with my 3 year old son Ryan yesterday. While I was on the phone with Jennifer getting an update, Ryan was sitting on my lap. I am always at the computer during update phone calls so that I can take copious notes. So I hung up and here is the conversation that followed:

Ryan: Mommy, who are you talking to?
Me: I was talking to Aunt Jenn.
Ryan: Why did you talking to Aunt Jenn?
Me: Because I wanted to see how Payton is doing.
Ryan: What’s wrong with Payton?
Me: Well, (fighting back tears) her heart is broken and the doctors are fixing it today.
Ryan: Why is her heart broken?
Me: Because she was born that way.
Ryan: Just like baby Jesus was born.
Me: Yes, just like that. When Payton was in Aunt Jenn’s tummy her heart didn’t grow the right way, so now that she’s out of Aunt Jenn’s tummy the doctors can fix it.
Ryan: But why do they have to fix it?
Me: So, that Payton can feel better.
Ryan: Oh, but why?
Me: So Payton can play with you.
Ryan: Oh, ok, that’s good.
Me: Can you think of something we can do to make Payton feel better? (I was thinking about drawing her a picture)
Ryan: Um….can we say a prayer to make her feel better?
Me: (Here come the tears) Ryan that is a great idea, let’s say a prayer.

Thanks for checking in on our sweet little girl. Keep the prayers coming.

Aunt Melissa

Day 1- The Recovery Begins

She’s PINK!!! Her fingers are pink, her toes are pink, and her feet are a pasty white, instead of blue!!

Jennifer and Donald have been into see her (obviously) and she looks great. She did awesome, she was the perfect patient and the perfect case. Everything went very well. Payton was off the respirator before she left the operating room and now only has a face mask for oxygen.

They did redo the connection from her first surgery (the norwood procedure) because of the narrowing that was discussed a few weeks ago when she did her Heath Cath. She’s only on 2 IV medications and they will dial those down over the next few days, she can’t leave the CTICU until she’s off the IV meds. She has 3 chest tubes for drainage (one for each lung and one for the heart) and will take those out when they are no longer draining fluid. Jennifer said that by this time tomorrow she could be down to only one chest tube. The final tube (from the right lung) will drain the longest.

They want her to be eating a regular diet and not have any drainage from the final chest tube before she can go home. Jennifer will be staying with her 24/7 since they can’t sedate her completely because she’s not on a ventilator (which is good!). They have taken photos which will be posted at some point. Apparently she doesn’t look as scary as the last time.

If you are planning on visiting she’s in the CTICU in the first room on the right, in the first bed on the right. Payton still has a tough recovery ahead but things are looking good, so keep those prayers coming.

Aunt Melissa

Day 1- The Surgery Has Begun

It has finally begun.

At 1:00pm they took them up the staging area to prep Payton for surgery. Then they had to wait for the OK from Dr. Starnes to give her a “drink” to prepare for the anesthesia. She was supposed to go into surgery within an hour of taking the “drink”, but there was a code blue in the CTICU (Cardio Thoracic Intensive Care Unit) which Dr. Starnes had to tend to before starting Payton’s surgery. Right before they took her to surgery Payton had pulled the blanket over her head and was waving to Jennifer saying “Nigh, nigh Mommy,” she was finally giving into the "relaxing drink." :)

They should receive their first update in an hour and a half. Then when the surgery is over Dr. Starnes will come and talk to Jennifer and Donald. Then they’ll have to wait 30-45 minutes for them to “set her up” in the CTICU before Jennifer and Donald will be able to see her.

Aunt Melissa

Day 1- Still Waiting...

They have now been given a window between 11:30am and 1:00pm. They are waiting for a bed in the ICU to open up. And they won't take her back to surgery until they have a place to put her when she comes out.

They told Jennifer they could give Payton some juice before 10:30am, but Payton doesn't want to leave "her toys" to go and get a drink. Donald has been building her castles out of large soft blocks and she's having a great time. They also meet another HLHS 2 year old who is having a Heart Cath today in preparation for his 3rd surgery (the Fontan). Hopefully you'll be hearing from me soon.

Aunt Melissa

Day 1- Surgery Day- Waiting.....

Jennifer called me this morning at 7:00am to say that Payton's surgery had been delayed an hour due to an emergency surgery. Now they are on stand-by until 10:00am PST. Payton has been playing with a dollhouse in the playroom, so hopefully that will keep her entertained and keep her mind off of food. Now her 3 hour surgery will start 3 hours late. Waiting Stinks.

Aunt Melissa

Payton had to be at the hospital at 9 this morning for all of her pre-op work. She was first seen by the Nurse Practitioner that has been working with us from the beginning & did very well.

We then had to go get an EKG done, which has never been Payton's favorite thing. So I broke out a new princess doll & a sucker. The combination of the 2 hit the spot. She had to be still & calm for 15 to 20 seconds & usually it takes a lot longer than it did this morning. The poor technician was such a good sport... he'd patiently replace the leeds after Payton with break free of them....

Then she needed an xray. Well I will just say that I'm glad it's over. She was a very good girl for the first one but by the 2nd she was done with the process. She ended up needing to be strapped down & actually did better than I thought she would.

Lastly she needed blood drawn. It went just as I expected so I was prepared... Payton on the other hand was not happy. The guy doing it was awesome & got it the first time. He also listened to me & took my suggestions. Payton started screaming when the turnikit was put on so when he got access to the vein I asked him to make a big deal out of taking off the big blue rubberband & she calmed down a little & was better. After it was off she looked at her arm & said "mommy no more red"!

It took her a while to calm down & I wanted to give her a good memory before we left so I took her out to the garden. It was completely decked out with Christmas Decor. We walked around until Payton was 'over' her experience. I asked her if she had any owey's & the first time she pointed to her arm & her chest (all of sickers from the EKG). I waited a little while longer & asked again. She pointed to her knees which let me know she wasn't thinking about her real oweys... or they stopped hurting her.

Surgery 7am Monday - So we have a surgical time on Monday. We are first case, which is awesome!!! Have you ever tried to keep your child from eating when they are hungry? Yeah no fun! So we have to be there at 5:30a & assuming she is healthy we will proceed.

There is a very good chance that she may not be healthy. Currently she has a runny nose & as long as it doesn't develope into something else (wet cough, fever, throw ups, etc.) we will be able to go ahead with the surgery. So I hope it doesn't have to be postponed... I'd love to just get this over with.

Fast With Us. We would like to invite any of you who would like to join us in fasting for Payton, the Surgical Team & Dr's & Nurses who will be caring for her this Sunday. As before my sister will be updating this blog on Monday & throughout the week when I cannot. We thank you for all of your thoughts & prayers.

Ready or Not... HERE WE GO! :(

Santa Pictures

We went to the Arcadia Mall & took Santa pictures the Wednesday before Thanksgiving. I loved how it turned out. My dad doesn't like the crying pictures but I do. They were really good considering that they were semi terrified.
Before the crying began Payton did talk to Santa (I was amazed!) & she asked for a Princess Baby. It's a good thing that we have been 'practicing' what she was going to ask Santa for because I don't think she would have asked at all... By the way, I'm not saying that I put the idea in her head, she's been asking for Toys when we go shopping a lot lately & I took my sister's lead & started saying that if she wants a toy she can ask Santa or Grandma. So over the last few weeks she's said that she wants a Princess Baby & I'm just glad she didn't change her mind. What I did modify/influence was which princess baby she will get... Jasmine from Alladin. She can be so easy to please... sometimes. I already had one & was planning on giving it to her in the hospital but got several things on Black Friday to tide her over.

Oh & I have to give props to their Santa... All I can say is AWESOME... He was so good with the kids & was very tolerant of our request to try the pictures again which allowed us to get the picture you see. Very good Santa!

Lately Payton has been obessed with her babies... bears, baby dolls, anything. Here she is watching Super Why, a new show she likes & they are all right there with her.

She is such a good little mommy to all her kids!

Update...

So last week we met with the surgeon & found out that we are going to be expecting a recover time of 7 to 10 days. YUCK is all I have to say. The surgery should take 3 hours & although it's one of the longest in the series (the other two were less then 2 hours) it is one of the 'easier' ones to perform. They are expecting several days of drainage which is why the recovery time is longer than what they had projected for the previous surgeries.

So Friday we will be heading to the hospital for the pre-op work up & that afternoon we find out when we check into the hospital on Monday & get our surgical time.

I plan to catch up on some posts so hopefully you will see a bunch on here thru the end of the week. I'm on overload right now with apartment stuff & getting ready for the week long stay I have ahead of me in the hospital with Payton.

So check back Friday night/Saturday morning for an update as to when the fun begins on Monday.