Geico Bake Sale for Maddison

We are so honored that Gieco has gone above and beyond and is doing a bake sale tomorrow in honor of Maddison to help raise money for her final expenses. I just wanted to write a quite note and thank everyone involved in that. We so appreciate your kindness and consideration for our family at this time!

Maddison had a rough night last night, her plus ox is set pretty low at 65 to buzz and she buzzed quite a few times. I ended up having to give her a couple of extra doses of meds to keep her calm. She had a pretty good day today so I am hoping for a better evening tonight.

Well about to go to bed myself! Just wanted to write a quick note before I did!

Ashley

Maddison home with Hospice

It’s been quite some time since I posted on Maddison’s blog but I thought I’d update it. We have had very unfortunate news with Maddi’s medical condition. We were scheduled to go in to get her broviac IV line out that she had put in due to the infection she got during her open heart surgery in February. They felt that Maddison did not look well the morning we brought her in so they admitted her to do some further testing prior to taking out the line. They discovered that Maddison had lost 2 ½ pounds in less than a months’ time. She was down to 16 ½ lbs and she is 2 ½ years old.




Originally we were thinking there was a GI issue going on and went for a upper GI and lower bowel study, both of which came back as “normal”. I was so relieved. When we wheeled her back up to her room a doctor immediately walked in and asked the echo tech if she had an aneurism on her heart. I was in total disbelief! She said she did see another large aneurism and I totally lost it! They did a CT scan and found that it was even larger this time than before. They were unsure at that time if she would be able to get another surgery done since this was the third time this has happened within a 6 month time period but the surgeon wanted the weekend to think on it. Michael and I had come to our decision that very same day however. We knew that Maddison’s little body would not withstand another open heart surgery and we wanted her home with us more than ever. We felt there was a very likely chance she would either not make it out of surgery or this very same thing could happen again and we may never get her home.



It was a very rough weekend for both of us but by Monday the surgeon came in and said he was in agreement with our decision. He felt that as a doctor if there was a 5% chance to save someone he likes to take that chance but he saw how that was not good enough for us and he could not tell us that this would not happen again or that Maddison would even come home. It made us very firm in our decision to bring our baby home. Mackenzie’s birthday was that weekend and we had a wonderful time as a family.



The Children’s Dream Fund contacted us and offered to send us to Disney for a few days. Maddison LOVES Minnie Mouse and so it was her dream to see her. We all had a wonderful time and I’m so very glad that she got to do something super fun while she still felt good enough to do it.



Maddison is now home with hospice care. She is on constant oxygen and is requiring medication to keep her comfortable. She is only awake for about 6 hours out of the day and has a difficult time breathing at times. She is still a very happy baby. You can tell that she gets tired quickly but she is always smiling and talking and just being a joy.



We are unsure at this time how much time Maddison has with us. The surgeon gave us a rough estimate of about a month but he said there is no real answer. They said there have only been a few cases where an aneurism has actually busted on the heart. They tend to just grow and take over the entire chest cavity. So far it seems to be doing just that in Maddison. As the days go on her oxygen levels decrease and she requires more oxygen and more medication. We are told, however, that she should have a peaceful passing of just going to sleep and we are so hoping she will continue to have wonderful days until God calls her home.



We so appreciate all of you taking the journey with us. Maddison has touched so many lives and has changed mine forever. I would not take one single moment back. She is the best baby anyone could ever ask for. She has the best disposition and I am so proud to be her mama! We will try to keep everyone as updated as possible!



Ashley

Update on Maddison

I know there has been a delay in me getting an update up. Sorry for that! I haven’t much time to get online since Maddi has gotten more active during the day and wants me to hold or play with her. Maddi is doing well. She has come a long way in a very short amount of time that’s for sure! She got her broviac line put in on Thursday which is the IV line they needed to put in for her to go home with. This is a long lasting line and has less risk of infection. All her meds have been switched to her g-tube as well. So she’s only getting the antifungal med through the broviac which is required to be IV.




She has been on again off again with the oxygen. She is so borderline on her stats that they feel like they should send her home with a tank to use as needed. Sometimes she just needs a very small amount in order for her stats to come up and her feel better. She is doing well on feeds. I think she’s had a few small spit ups but nothing major. They did do a saliva study on Friday. We give Maddi small amounts of water in a syringe to wet her mouth and there was concern of aspiration since she’s had a history of having pneumonia in the past. They were attempting to do a swallow study but she would have had to be restrained into a upright seat with buckles and given different consistencies of fluid to see what she would and would not aspirate on. A therapist came up to try and work with her prior to the procedure and found that she was not ready for such an extensive test given that she would not stay restrained into the seat let alone eat anything! So her GI doctor suggested a saliva study. He said with the small amount of water we were giving her would really only amount to about what she had in her mouth already. We got the results back today and she passed! She was not aspirating on her spit so we are able to continue giving her the water. Which I’m so thankful for because her mouth gets so dry sometimes!



They are talking about us being able to go home in the near future. They are working on getting some home care set up so they can come show me how to properly take care of her IV and give the med that she needs. And they are also going to be working on getting oxygen delivered to the house. They said once those things are in place alone with her “behaving herself” (keeping her fevers down!) we could go. So we are hoping we are looking into the near future!



Overall I think she looks good. She is a little more tired than normal but we have been able to take her into the play room they have her for periods of time and she enjoys that. Times like those we see our Maddi getting back to her old self! We hope to be giving reports of going home soon!



Ashley

Maddi's off the vent

Maddison got off the vent yesterday! She did well but it is very difficult to watch her come off. They really have to have her awake to take it out so she gets all red in the face. They also put in another IV since one went bad and took out two stitches, all within 30 minutes. I was able to hold her for quite some time yesterday so that was nice!




She is on quite a bit of oxygen with the nasal cannula but we hope to wean that down some today. Overall her stats look good, even better than last time. She’s resting now so I was able to do a quick update. We’ll see what the plan is today. Hopefully we’ll go down on the oxygen and possibly start feeds.



I’ve attached a photo, this was from yesterday.
Ashley

Open heart #3...done!

"Open chest"

   Maddi is such a strong little girl. They took her into the heart cath yesterday morning at 8:45 as planned. After injecting a type of die into her arteries to illuminate them on the x-ray they determined that it was not possible to be fixed by cath. (as I talked about in the last post) so they prepared her for open heart surgery again immediately. It caught us off guard when they came in to tell us, because that wasn’t what we were expecting. But…God expected it, and He already knew the outcome!

  

   The aneurysm was formed on the conduit that they placed into her heart during the surgery on February 21st, due to a combination of factors. They found that the infection was actually yeast, which is why the antibiotics weren’t working, as antibiotics treat bacteria. Yeast is a fungus. The antibiotics that she has been on for over a week now, have made her immune system lower. A combination of the yeast, the antibiotics and the fact that there were new suture lines from the previous surgery made it possible for the aneurysm to form. We were told that had she gone even another day that she was at risk of the aneurysm to rupture. It was at first overlooked and passed off as pneumonia. BUT GOD… brought it to light and the problem was found and addressed before it could do harm to our little girl.

   During the surgery they removed a portion of the conduit and all of the aneurysm and replaced it with another conduit with “extra sutures” this time, so that it shouldn’t form again. She did well during surgery and was able to come off of bypass on the first try this time with minimal bleeding. Her O2 stats came back up to better than normal levels, in the 90’s, her average is 75%.

"chest closed"

   Now they will continue to test the culture from the yeast to find what strand of yeast it is so that it can be treated appropriately. Today her chest was closed and they did an anti fungal wash inside her chest cavity before closing it to take care of any remaining yeast. Her stats are doing GREAT, We were told by the doctors that this was one of the best post-op recoveries they’ve seen (praise God) especially given the fact that it was a re-operation. Over the next couple of days she will come off of the ventilator and go through the whole process that she did last week all over again. And if all goes well, and it will, she would be able to come home with in around 3 weeks.

Thank you for all of your continued prayers and support. Prayer truly does work!!

<>< Isaiah 53:5 ><>


But He [was] wounded for our transgressions, He [was] bruised for our iniquities: the chastisement of our peace [was] upon Him; and with His stripes we [ARE] healed. That includes Maddi !!


-Mike

Maddi is not doing so good today...

Well for the past few days Maddi hasn't been doing great, she has been sleeping all day and had labored breathing. They did a CT scan and found that she had another aneurysm on her heart, this time on the left side. From what we were told it was caused by how the sutures healed after the surgery on Feb, 21st. So tomorrow morning (3/11/11) at 8:45, they will be taking her into a heart cath to insert a coil into the aneurysm to stop the blood flow and get it to clot in that area. So that it no longer continues to grow. As long as that works then they will not have to open her back up again. But they have also told us that it is a possibility that the cath will not fully repair all of the problem, and that they may have to go back in and do surgery again.

Please keep us in your prayers especially tomorrow. This is a very hard time for us as a family to deal with all of this. But little Maddi has it much harder, with what she has already gone through and what is yet to come. We "know" that God has already made a way for her, even when there seems to be no way. He knew that this was to come and He has already made provision for her. Maddi will be 100% whole again soon, at home playing again with big sister.

Thank you all for all of your continued support and prayers it helps us a lot to know that there are so many people out there praying for our little girl.

Getting Back To Her Old Self!

Well the weekend is nearing an end and Maddison has been doing well. She was given blood products yesterday and she sprang up and was like her old… well maybe 80% of her old self! She started talking right away and wanted to get out of bed and play. She was able to hold her body up by herself where just hours before she couldn’t hold her head up! They told us that she was anemic and it’s amazing how big of a difference the blood made!

She is doing well today. She slept most of the morning. But she was up until midnight last night. Mike & I werent’ able to leave her until she went to sleep! So she slept in. She’s been awake and playing since around 3pm today and we are hoping to keep her up until 8-9 so we can actually get to bed at a decient time this evening! Mike is driving back to Lakeland so he can’t be driving back that late! She’s been rubbing her eyes the past half hour so we’ll see if she can make it another 2 hours… I’m guessing not! Haha…

We were told today that they’d like to give her antibiotics until Thursday of this week and if she is off the oxygen and doing well we could possibly go home on Friday! This is the first we’ve heard of going home at all so we were excited!! She’s had a few low grade fevers today but overall it’s been a good day.

They did get a little more aggressive with her pneumonia. They put this vest around her chest and it shakes her for 20 minutes! It actually looks like it would be that comfortable but so far she’s been doing okay with it! They also changed one of her inhalants to a stronger med so we are hoping that will help that lung as well.
We’ll keep ya posted on how the weeks progresses! I hope to be going home this coming weekend… wouldn’t that be WONDERFUL!
Ashley

Feeling a little better today

Maddison had a rough day yesterday. When I came in she had a fever over 102 and she ran a fever all day. She couldn’t get comfortable at all so she tossed and turned all day. By the end of the day her eyes were rolling in the back of her head. The doctors decided to remove her central line in her leg and replace it up on her shoulder. They felt that there could be infection there since her body was not reacting to the antibiotics that she’s been on. They also added a third antibiotic on yesterday.

They were alternating Tylenol and Motrin every 3 hours and her fever just wouldn't break. I came in this morning and she looks like a different kid! She has been sleeping most of the day since I got here and is actually able to relax! I’m not sure if it was the line or one of the meds but she hasn’t had a fever all day and she looks like she is on the upswing again.

They have restarted her feeds. They said they hope to have her up to full feeds quickly. She is still on oxygen mostly for comfort. She tends to get on a coughing spell and can’t stop. When she’s not breathing in good her stats tend to drop quite a bit.

Her incision looks good. Just a few scabs but overall it looks clean. They took the stitch out of the last chest tube site yesterday so that wound is still pretty fresh but overall those are doing well. I am heading home this afternoon to spend the night with my older daughter Mackenzie. I haven’t seen her in nearly 2 weeks and I really miss her. We are going on have a “girls night”. Mike is going to come over with Maddi this evening to keep her company. We'll keep ya posted on the updates. We hope to be heading towards recovery at this point so we can get home. We ALL miss everyone being home together.

Ashley

Got a bath today!

Maddi had a steady day. Nothing all that new. They are going to bring in a doctor tomorrow from infectious disease to see what their opinion is on why she is spiking high temps. She’s run a low to mid-grade fever for about 5-6 days now. They have her on two different kinds of antibiotics but so far they’ve not helped. They told me that they should be helping at this point. They did switch one to another med today and have her getting Tylenol every 4 hours. She only got one low grade fever this morning right when I came in. The rest of the day she was good.

She seemed much more comfortable today. She is still very weak but she didn’t act like she felt as bad as yesterday. They are going to be going up on her feeds tomorrow. She’s only getting 5cc per hour at this point and her goal is 30cc per hour. Hopefully despite her being “sick” with the pneumonia she will keep it down. Typically when she gets sick at home she doesn’t do all that well but we’ll see. Only time will tell. I think if she gets more food in her belly she’ll gain some strength. She can hardly hold her head up at this point.

She did get a sponge bath today! Been 8 days since she had one so she was way past due! Haha… she smelled like a foot. She was so happy to be nice and clean in her new sheets. She rolled over and went to sleep! Got a photo from today attached. Every day she gets better, and one day closer to coming home!

Ashley

Awesome Day!

Today was an awesome day! I was able to hold my Maddi! When I came in this morning she had her chest tube out. I would have just been excited with that news! But it just got better! They took her arterial line out of her leg so I was able to hold her!! They also started her feeds. We did attempt to take her off the oxygen and she did okay for about an hour but then she got on a coughing spell and couldn’t stop so they put her back on.

They are now telling me that she does in fact have pneumonia in the right lung. So really until she gets over that she’s not going to feel very good. They do have her on antibiotics so hopefully that will continue to work over the next few days. So far things are looking up! The antibiotics she has to be on can only be given though IV drip and they want her on them for 14 days. So far we are at day 5 so we will have 9 days of a stay for sure. Hopefully she’ll get to feeling better this week and we might can come home next week. Hopefully! Never know with Miss Maddi!

Just wanted to pass on the awesome news for the day!
Ashley

Starting Feeds

Maddison is having a good day. She has managed to stay of the ventilator and is doing well. She still has some labored breathing from time-to-time but overall she’s holding her own. They have put her on c-pap which is kinda like a high powered jet of air to help pop open her lungs. They are hoping if she gets maximum use of her lungs she’ll take deeper breaths and not have to work so hard.

We were just told moments ago that they are going to start feeds this evening. They are going to start with some pedilite to see how she handles that. Then tomorrow consider mixing some formula in. Her chest tube is FINALLY slowing down. They told us if it continues to drain slowly they will most likely take that out tomorrow! Then I can finally but some clothes on her!

She has had a wonderful nurse today, one of my favorites, TJ who has been taking very good care of her. She even made her bed all pretty and did her hair! That photo is attached. Little by little she is getting stronger. She hasn’t said any words to us yet but she will just stare us down making sure we aren’t going anywhere!

Hopefully I’ll have good news to report on feeding tomorrow!!
Ashley

Maddi is off the vent!

The vent is OUT!! WHOO… They just took Maddi off the ventilator. So far she is doing well. She is breathing kinda fast but otherwise her stats are good. We have our fingers crossed that she will do well. She still has one of the chest tubes still in. Unfortunately it is still draining quite a bit.

They are letting her rest for the rest of the evening. She is on a nasal cannula at 100% oxygen but they are talking about coming down on that tomorrow so long as she has a good night. She got really worn out just by taking the tube out so she is resting now.

Not a long update but a very exciting update! We are moving in the right direction! Hopefully if she wakes up a little more I might get to hold her in the next day or so!

Ashley

Going Steady

Maddison had a quite night last night. Unfortunately when I came in this morning, the nurse said her x-ray didn’t look great. They said it was very hazy on the right side. The doctor came in this morning with an echo machine to see if it was fluid or something else. It ended up being that the lower right lobe of her lung is collapsed. This is the area we always have issues with when she is on the vent.

They went up on a setting on the ventilator that maximizes the pressure going into her lungs in the hopes of getting it to pop back open. They’ve also weaned her down on some of the sedation meds to see if she wakes up a bit she might be able to take bigger breaths. She has started to stir around a bit more, especially when she is getting a diaper change so hopefully that will help.

Her chest tube is still putting out a lot of fluid so they’ve decided to keep that in until it slows down some. So far it seems like it’s going to be another quite day. They said they’d see how her lung looked tomorrow to see if we could go back down on the pressure settings in order to get her off the ventilator.

Keep ya posted.
Ashley

Keeps getting better!

Maddison is having another good day. She’s finally gotten some of the fluid off of her so she’s not quite as puffy today. They are planning to take 2 out of the 3 chest tubes out today! We are glad about that. They are also weaning her oxygen levels on the ventilator and are in hopes of getting that off of her within another day or two!

She’s been very quiet today, only a few times has she acted like she hasn’t felt good or something has been bothering her. They did tell me that she spiked a temp of 103.4 in the middle of the night and she still feels a tad warm today. They are hoping there isn’t any infection setting in so they’ve done cultures to rule that out or are able to find what they need to treat. Just as a preventative they have gone ahead and put her on antibiotics.

The photo below is Maddi with some of her new “friends”! Mike & I got both girls (Maddi & Mackenzie) matching pink hippos so that Kenzie could know that she can hug the pink hippo whenever she wants to think of Maddi. And she also got a cute little Lamb Chop doll from LAR… very thoughtful! (LAR is Lakeland Association of Realtors, a company my mom works for)

We’ve also received some donations from friends and family. Please know that we are SO grateful for that extra help. It truly is a blessing to know how thoughtful everyone can be in a time of need , we so appreciate it!

I’m sure I’ll have a new update to blog tomorrow! But so far so good!!
Ashley

Maddison's Second Open Heart Surgery

Maddison came in for her second open heart surgery on the 21st of February. It was a long day, over 10 hours in the operating room but we got through it. Maddison did great and she is recovering well. They did have to leave her chest open for 24 hours just to allow some swelling to go down. Yesterday they were able to close it and she is doing quite well at this point. Today they had hoped to get the chest tubes out but she is still putting out a lot of fluid so they've decided to keep them in for another day or so.

She is retaining a lot of fluid at this point so they went up on her Lasix which allows her to get rid of fluid faster. Her feet are so puffy and big! They look like they could pop! Overall there is not a lot going on today. They are going to take the RA line out of her chest today which is a pretty small line but apparently a big deal to come out so we are happy about that. They will reconsider taking out one or all 3 of the chest tubes tomorrow after the Lasix has some time to work.

They are working slowly on getting her off the ventilator but they can't completely take her off of that until the 3 chest tubes are out. We hope within the next week or so she'll be on her way to waking up. The worst part is not being able to hold her and talk to her.

She is a tough cookie though! She's strong and has a great will to live that's for sure. It always puts a smile on my face when I have a nurse or doctor come in and tell me that she has exceeded their expectations! Couldn't ask for more.

Thank you to everyone who is keeping our family in your thoughts and prayers!

Ashley

Below is a photo of Maddison today, Feb. 23rd with her chest closed.