Lexis a WHOLE Month old today! Praise the Lord! Thats one more month than she was supposed to have! On Monday, the 19th, we were told Lexi was going to Chop the next day. However due to the insurance company no longer deeming her sick enough to fly, there was some transportation concerns. Both on the part of her having to endure a 4+ hour transport (if in ambulance) and either hospital losing a transport team for an entire day. Also the recent snow storms were being taken into consideration as well. On Tuesday, the 20th, we were told Lexi would be going to Chop, that day Via helicopter. She did get in, and take off, but as soon as she was in the sky, heavy snow hit, forcing the pilot to return to Danville. While in transit back to the NICU, she kicked out her surgically implanted femoral IV line. On Wednesday, the 21st the CHOP transport team left in an ambulance to pick her up. They planned to be en-route back to Philadelphia, with The Bird, by lunch time. They departed, with Lexi and Amanda at about 3 pm. They arrived later that evening at CHOP, safe and sound, after a long ambulance ride down snow covered highways. The Killian, Tessa, and I arrived a long while before, but spent most of that time on a suggested short-cut tour of the local ghettos (thank you Google Maps), and then parking in every incorrect parking garage, before arriving safely at the well lit and security protected Chop garage. Lexi had what seemed like a pretty good ride. Her incision site was really really irritated from not getting its regular cleaning and redressing during the ride (not a practical procedure for in the back of an ambulance). This area requires alot of attention because currently all of the bile that is leaking into her abdominal cavity drains through her not yet healed incision. This is partly due to her tissues being too fragile to actually close the muscle. Eventually she will heal with a hernia, which down the road will need to be repaired. Although it hurt to see her owy, it was kind of good too. It really brought it to her new surgical nurses attention, and they spared no expense getting right at it and quickly came up with a whole new plan of attack to get it healed. It really looks great now. Still not healed of course, but they are using an array of really cool stuff to protect her skin, catch what leaks, and promote healing in the area. Probably the best its looked since it took on its current status. Shes nice and comfy, and still holding very stable and strong. All her stats are good, and lab levels are good, or continuing to improve, depending. Oxygen is still perfect, with no breathing assistance. White blood cells are still high, because of the infection, but those and the inflammatory markers are trending downwards, showing that the antibiotics are working. Her Hemoglobin is staying right at 9.8, so still no need for transfusion. Platelets are up to 128. Highest ever! Bilirubin is down to 1.7, so though still elevated its down from 2.5 just a few days ago. What this shows is that her liver is improving dramatically! So in the words of her new surgeon, though they are not at all satisfied with her condition, she has a good head, a good heart, and a good liver, which is more than most of the other babies in the surgical unit have going for them. Her new surgeon, who is one of many from the GI specialized unit that she could have been assigned, was described by all the nurses as the best. Were told that what Lexi has going on is what he excels in, and has a real passion for. He is apparently the top dog, cream of the crop surgeon to fix Lexis tummy. God has blessed her, in relation to her needs, with the best doctor in the best hospital she could be in. Her tummy, Ill do my best to put this all together. As of today they have removed both drain tubes for her abdominal cavity. These were only intended as temporary post op drains, and havent really been draining any thing (ideally what is draining through her incision should have been draining into them). So now that area still has the bottom of her top portion of intestine, and the top of her bottom portion at the opening, so they plan to promote it into healing as an iliostomy, as was the original intention at Danville. The new surgical plan is to not operate again for as long as possible. Definitely not before 3 to 6 months, unless an issue develops with absolutely no non-surgical alternative arises. Basically the longer her liver, stats, and levels stay solid and healthy, she will be resting and healing. They will monitor and do imaging, of her and make the decision of when to do the reconstruction from there. Their motto with bowel surgeries is the longer between the better, and that should never be done any closer than 10 weeks apart or you will likely just cause additional damage. So now that all the bad stuff is out, and dangerous leaks are paused, she needs TIME. Please pray for stability and health that she is able to just have rest and healing, not requiring surgery before the optimal time. Her eventual next surgery was describes as A big surgery and that its going to be challenging to put her back together, shes a mess inside, but they have a plan of how to do it. It seems as though the course of her treatments thus far should have been done much differently, as well as her surgeries far less numerous, with drainage done another way, but shes not the first baby that the Lord has fixed at CHOP, whos treatment didnt begin in the optimal manor. So were far from out of the woods, but she is no longer at a hospital where a kid with her condition has never made a full recovery. She has been on a long road, I believe for some other people along the way, and we are so very grateful for all the people that worked so hard to get her this far, and now Lexi is at the place she needs to be for Lexi. The only foreign object she still has in her belly, is the drain tube from her stomach. This they even have plans of coaxing her body to grow a tube around it, making its own drain. If this occurs they will pull this tube as well, removing another infection risk. In a few weeks, depending on the speed of her progress and what they find when they begin doing internal imaging, they would like to sneak a feeding tube down through her stomach, and past the remaining drain tube. If successful they will begin to give her very small amounts of milk, straight to her small intestines. This will encourage her intestines to begin functioning, to get stronger and more ready for eventual re-connection, to grow, and as they are able to increase the amount will give her nourishment, decreasing her IV dependence, thereby relieving stress from her liver. Please pray for the eventual success in this too, it would make a world of difference in her recovery. CHOP, Its in Center City Philadelphia, so no longer conveniently close like Danville, but alot of neat sites to see when coming and going. The hospital has sleep rooms and other type things for parents, but not for siblings, but even though shes still in isolation CHOP allows siblings in to visit, so the kids can see her when we bring them along. Also even though the local Ronald McDonald house has a very long waiting list, they said if we are only coming for a one or two night stay, they can probably accommodate us on weekend nights, so we can bring the kids without having to spend $150 a night on a hotel (very expensive area). At first we were afraid that Lexi was just going to be a number at Chop, vs. the almost family feeling we had a t Danville, but as we un-nerved a little, they seem to be very nice, and she has a small tight knit team of all involved departments looking after her, and even has a Surgical Nurse, who as long as Lexi is there, Lexi will be her only assignment. The hospital staff seems very nice, and they seem to care for and look after the whole family, not just the patients. Also kind of a bummer is that at least for now, we still have to wear gloves and gowns when seeing her. The good part is that they let you take the gloves off as long as you sanitize your hands after touching her, and BEST of all..... We are now allowed to HOLD her!!!! I cant even begin to describe how good it feels to hold your new born baby after almost a month (her only month so far) of not getting to. She was the only baby so far that I have ever been afraid to hold, but it was SO GREAT!!! Please continue to pray for that little Coo Coo Bird, especially since shes so far from home, and around all those city birds! God is so good, and love that He continues to do such great things in such a little body! Thank you everyone for those prayers, theyve gotten her this far, and I know they will bring her the rest of the way too.
Posted on: Sat, 24 Jan 2015 04:45:35 +0000