Sorry for just now posting on the blog. Just been busy taking care of babygirl and helping family get trained on her care. Last week after I posted, Aunt Missy and Meme came up to learn about the care for Jenna when we go home. Of course when Jenna saw them she was happy, but then she just wanted them to set down and be in the room. She has been quite tempermental lately, especially since Daddy left. It was great having them here for learning about her trach and g tube and I hated to see them go, but they will be back this week for Thanksgiving. They enjoyed their time here, even though it was all about learning. Nonny came this past Sunday and will be here thru Thursday morning. Jenna was happy to see her too, and again wants her to set in the room and just be here. Everyone has done great so far learning about her care, we are so lucky to have so much family that wants to help. We are so blessed. :) As the same with Meme and Missy, Jenna has played and enjoyed being with Nonny. They were all so thrilled to see her face after 2 months, and can't believe how big she is now!
So, we ended up scoping Jenna on Friday, since she continued to vomit and all tests had been normal so far. Well, this test was late in the day, originally scheduled for in the morning, but someone accidentally fed her in the middle of the night, so she was bumped on the schedule. We did the test, which she was very unhappy afterwards as always after anesthesia. She had to go to the OR for it, since we are no longer in CICU. New experience for us, but things went fine. The nurses down there loved Jenna and said that she looks a lot scarier on paper than in person. They could not believe all that she has been through. She is our little fighter. :) So, the GI docs came out after the test and said that she did great, but they found something interesting. Go figure with Jenna, huh? So they said that her esophagus and stomach and small bowel look great, the ulcers are completely healed, no issues. However, when they went into the end of the stomach to the small bowel they noticed that the balloon for her G tube was blocking her pyloris (the opening area between the two), which would cause her feeds to back up and make her stomach contract, causing her to vomit. He said that her stomach ending is more narrowed now due to her ulcers, so when it contracts, it closes completely around the balloon, making no room for anything to go through. So, the answer was to change out her G tube type. They switched her to a non balloon. I told them that she vomited prior to the G tube, which they said that typically G tube fix the vomit, but because the look of it changed after surgery, something else had happened. So, he said that can he say that it will fix the problem, no, but he can say that he has seen this issue in kids before. So, she was pretty sore after the scope, but Tylenol helped. Unfortunately through the weekend her vomiting did not cease, so back to other ideas. The GI team stopped by yesterday to discuss her situation. The doc on call this week discussed the fact of her emptying of her stomach. He said that it is possible even though her test was normal, the amount of food in to her after some time can back up and have trouble emptying. He said that since her phrenic nerve (diaphram issue) was damaged, it is highly possible her vagus nerve (controls your stomach emptying) was damaged too. So, he thought that maybe we could try a medicine that helps empty. He said that he did not want to go the route of the G J tube insertion yet, because her tube is so new and not completely formed with her stoma. So, we started that med yesterday, she vomited right when she got her first dose, but it was not in her system yet. So, since then she has been getting her doses, no vomiting!!!!!! Knock on wood everyone and pray that we have solved the problem! He said that the med effectiveness only lasts 6-8 weeks and you can increase the dose. But since Jenna is a heart baby, this is not a good idea because it causes heart issues. So, he will keep it at a low dose, she can take a break from it for a week at that point and restart it and it should work again. So, we will see. I so hope this works for her. The GI team was pleased when they came by today and she was still doing well. Last night I decided to get her a cheeseburger and fries from McDonalds (her old staple) to see if she would eat it. She was thrilled and had 5-6 bites and 3 french fries. She did great! This morning she was hungry again wanting food, so I tried fruit loops, she wanted no part. I asked her if she wanted her leftover burger and fries, which she said yes. So, she tried those again and ate 5-6 bites again and a couple fries. She did great! So, the dietican wants to see if we can hold her feeds until tonight and give her the chance to get hungry. She is scheduled to get formula overnight. We will see how she does. Go Jenna!!!!!! We are still awaiting the results of her biopsy from her scope to come back, they are checking to make sure that she does not have an allergy to anything, which can be detected this way. We will see. As with the other teams, GI wants to coordinate seeing them with everyone else. They figure they will only follow her every 6 months. Pulmonary feels the same way, and we are to call if anything changes with her. They both will send us home on a plan for her care.
She continues to have multiple bowel movements, with blood in some due to her C Diff. So they tested her again and she was negative. So she has had 2 negatives and 2 positives so far. They spoke with GI who said that she should actually be on the antibiotic regiman for about 3 weeks, instead of the 10 days she got before. So, we started that again today. She has a severe case of diaper rash now and is very uncomfortable with it, so hopefully it will clear up soon. During rounds this am they discussed about the outlook of going home. The care manager said that she is trying to make sure from the nursing group that a nurse is lined up for us once we are discharged. The attending doc feels from a pulmonary point she is clear to go and cardiac wise. Regarding her C diff, she will just continue until the antibiotic is out, and then follow with our pediatrician once we get home. They asked if I am signed off on everything, which I have one more vent troubleshoot and I will be doing my 24 hour stay this weekend. SO, they feel if her vomiting ceases with this medicine, that we could go home as early as next week!!!! We received a letter of approval from the insurance yesterday about nursing care, in they have approved the out of network group since there are NO ped nurses for private duty at home. So, I called customer service for benefits and we are covered, unlimited on visits. This was the best news I had heard all day, I was so thrilled because this will help us out so much. The only hiccup is that they only approved us for 6 visits for some reason, so the care manager is looking into it for us. Cross your fingers it works out!!!
SO overall Jenna continues to improve, slowly but surely. Now that things are moving along I am starting to get nervous. I am trying to prepare myself to going home, which is hard since we have been surrounded by people helping for 4 months. This is a whole new world for Justin and I to get used to, but I know we can do it, considering we made it through these last few months. I spoke with our home care supplied today and they are arranging coming to the house soon. Oh, so much to do before we get home. But, I right now I am hoping that she does not vomit anymore and I am looking forward to seeing more family this week and especially Justin this weekend. He has decided to wait until Saturday after work to come, since Kroger was great enough to grant him his vacation next week. He is trying to get ready for us to come home. We can't wait to see him, I let babygirl talk to him everyday and she gives the phone kisses and waves bye bye. She misses him so much.
So I will try to keep everyone posted on her status. Again sorry for not posting before now, things just get crazy sometimes. Miss you all and love you all. Keep her in your thoughts and prayers as always. Cross your fingers things go well and soon enough we will be heading back on the AA to West Virginia!
Love, Jenny Justin and Jenna