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