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