So sososososoososo sorry for not posting this past week. As per the title, Jenna is starting to become herself more and more each day. Last we spoke Jenna had gone for an MRI of her head/brain to see what may be causing her apneic episodes. The MRI came back basically normal, only thing it showed was volume loss-making areas in the brain seem larger than normal. This is just a result from being bedridden for so long, in the ICU, not doing daily activities, etc. It is very common for this to happen in the situation which Jenna has been in. On Saturday they changed her Ativan, which she had a little trouble with, but made it through and relaxed enough to nap. Family came in to see us, we spent time with Nonny, and Uncle CJ which was nice, ate lunch together. Later that day Meme and Pawpaw came up and stayed until Sunday. It was great seeing everyone, since we don't see them every day. About midweek, friends from home came up to see us, which was great, thanks Brandon and Becky! Got us out of the hospital for a few hours. :) More family was to come in this past weekend, but Miss Sophie is not feeling well, so I want to say I hope you feel better Miss G, hugs and kisses from your Aunt Jenny. This week everyday Jenna has been able to get stronger and stronger, we have been working on more trials of being on the mist collar during the day, which just gives higher flow oxygen to her, not just regular oxygen, she has been able to make it up to 4 hours at a time, with breaks and if she is feeling well an additional 3 hours that day. Depends on if she is spunky that day or not. Otherwise during the day she is on her cpap settings and on her rate settings via the vent when napping. She is feeling well enough to go on wagon rides again, set up in the chair on her own and play, get in the floor on a mat and play~staying in the bed is for birds :) She has stood up with minimal assistance this week from PT, only a couple of times, but that is better than none! She has also crawled quite a bit, trying to get off of the mat and out of the room. She has scooted herself to the edge of the bed more than once when we are gone, scaring the nurses half to death, but is just trying to get their attention so they can come play with her. I told the staff, she is just testing you, to see if you are paying attention to her. :) On Friday, one nurse suggested that we get a new device for her to ride around in, Jenna has a "BRAND NEW CAR!" It basically looks like an old style dune buggy, that she can turn the wheel and it even has a place for her oxygen tank on the back! What til you see pics! She loves it, so much that she went on two rides yesterday! Of course, now today she is really tired. Well, the price you pay to play. Jenna's strength and stamina continue to improve. She has a tendency to sleep long periods of time after she over does herself, but while she is awake she remains the center of attention. She is sitting up, watching TV, coloring, waving, trying to talk, and anything else a typical 2 year old does. Well, she is at least trying to act like a 2 year old.
So this past week, a new doc came on, Dr. Derikk Wheeler. He was really nice, a good patient advocate and was great to listen to parents. I expressed my concerns more than once regarding her withdrawl symptoms and changes in her medicines, and he took them into consideration and listened and went with what we felt was best for her. It was so pitiful seeing her just sweat, be jittery and act like she wanted to jump out of bed. So, they felt that they may be moving her too quickly, so they backed off on how often they were adjusting her meds. She is now on her Ativan every 8 hours, 1mg and Methadone every 12 hours, 1mg. They want to get her doses spread out, before they start lowering her amount. So far, she is doing ok today with the change to every 12 for the methadone, we will see.
So, stomach wise she has been doing better. She finally made it to full feeds 5 days ago, so far she has not vomited blood for over a week, yay!!!! Every day she is still vomiting 2-3 times mostly when she wakes up, and when she coughs a lot and triggers her gag reflex. Some days she vomits up to 4-5 times, just depends. They were stopping her feeds every time she did it, but thought to try and just push through and see what happens and then she is fine. The doctors are not able to give us reason, because they honestly do not know why she is vomiting. They do think that between her gag reflex and excess mucus, she is just clearing herself and that is the only way to do it. They are not too concerned about it, but are still trying to come up with a solution. Jenna still has the NG tube in place, which goes in her nose down to her stomach. Even though she has not had any blood in a week, they still think the tube could be irritating her esophagus. Plus they know that she is going to need to have the tube long term due to still being on pressure support during the day and she is not able to have anything by mouth until this is over. Jenna also will need lots of calories and nutrition to maintain the weight that she has gained, and strength wise she is not able to do that yet. Plus it will help with the irritation in her esphagus. Tubes in your thrat are not ideal long term, only supposed to be in 5-6 weeks. In order to fix this, the GI doctors recommend having a G Tube put in, which enters the stomach from the abdominal area. We met with the surgeon, who would putting the G Tube in, Dr. Inge. The original plan was to do a GJ tube, putting food into her intestines, but since she is tolerating food in her stomach, they will just do the G. He said that he is going to review her upper GI results to make sure that her stomach empties ok. He is going to get back with us the first part of next week on when the surgery will be. Hopefully in the next week or so.
Jenna's heart continues to work exactly like it is supposed to. We still have not had a chance to talk with her cardiologist about the CT Angiogram results, but we have been told that the pictures are good and should put a map in place as to what will happen next. Her cardiologist will be returning from vacation on Monday and we are supposed to meet with him during the first part of the week. In the mean time, we were able to talk with her surgeon about the results. He didn't seem too excited about the results, because she has 4 small arteries, that are embedded deep in her lung tissue, that need to be wider. In order for him to fix the problem, he would have to go into her lung to operate on the arteries, which he said would be a very difficult surgery. So, he would like Dr. Beekman to look and hopes he is able to fix them during the next cath. Jenna's cardiologist is due to come back on Monday, so hopefully he'll be by to let us know what he can do, if anything. Opening these arteries would improve her blood flow to her lower left lobe, which is the goal, but not sure what will happen if they are not able to get to them.
Jenna continues taking small baby steps with her respiratory issues. During the first part of the week, Jenna had a sleep study done due to the recent episodes of sleep apnea. She is only having these issues when she has had a busy day, but the doctors were curious as to what was causing her to have them all of a sudden. After the study, it was determined that Jenna does have Central Sleep Apnea, which is her brain not triggering her body to take a needed breath. We have been given two reasons as to what caused this, but neither is exactly the issue more a combination of the two: 1) Most people who have heart disease develop this apnea, but as the heart gets better, this improves too and 2) It is a result from the day she coded and was without oxygen for 9-10 minutes. They say that it is more likely to the heart disease and her low baseline oxygen levels, since her MRI indicated no brain damage from the day she coded. They do not know how long she will have it, but it is something she could possibly grow out of. It just depends. As I see it, her heart has always been a palliative situation, which means it will never be "repaired", so we may has this situation for a while. They do not feel that she will have it long term. Also, if sleep apnea is the only problem that came out of the horrible day, then we will take it!!! So, since she has this, she now has to be on a vent setting rate at night time or when she is sleeping (naps included). She is having these episodes only when she is in REM sleep (very deep sleep) and she is having 8-9 episodes an hour. Her oxygen in these situations dip as low as 64. Also, since her baseline oxygen is to be from mid 80's to low 90's per Dr. E, then they cannot adjust this in any way, to help possible getting her off the rate at night for now. If her oxygen levels are higher than that, Dr. E. says that it is over oxygenating her body and he does not want that. So, now that we know she is going home on the vent, they have adjusted her to the LTV machine, which is the type she will go home on. Today is the first day and so far she is doing fine on it, most kids fight this machine, because the time it takes for them to get the breath, from when they trigger the need is longer than the machine she has been on. But, she is ok. They have also started the process of trying to get us on the list for the TCC unit, because it takes a while to get in there. The unit is apparently always full and currently the list holds 4 kids (besides Jenna) that need a bed there, so we are the last in line for now, so it may be a bit before we get there. Hopefully not, we will see. We are going to try and get ourselves pretty prepared before going, so when we get there we just have to be signed off on the education, get our nursing care set up for home, and be on our way!
So, this past week Jenna has done well. Every day she does something new (well new to us because she has not done it in forever) and it makes us so happy to see her doing that! She is smiling and laughing, learning new signs to communicate with us, wanting to play lots. It is great! She is being her fiesty self again, wanting lots of attention, which she always gets. Last weekend she was up all night both days, so it was party in Jenna's room. Also, one night she did not know her night nurse, so, she would not let her in the room. Every time she came in, Jenna pointed to the door to tell her to leave. She was a nice person, but for some reason she did not want her in there. So other nurses had to come in with her, so Jenna would be ok. Last night, we were talking to staff about music, so they started playing some old school rock on the computer and Jenna sat up in bed and started dancing, it was so cute! We are so happy she is feeling better.
Again, so sorry for just getting this posted to you. I am going to try and post some pics of her too. She is sleeping now, which is good, trying to get her on a routine again of nap in the afternoon. Some days are easier than others. I had to lay with her in bed earlier to get her to nap, which was nice. We layed in the floor on the mat together yesterday and watched TV, it was fun! The staff just laughs at how she acts all the time and we say, "this is Jenna all the time". They are happy to see how she really is at home. So, hopefully this week we will get a date on her G tube surgery and talk to Dr. Beekman about her CT results and what her next step with her heart will be. Hopefully she will do good with her withdrawl meds this week. Just keep praying for her, as always. All the prayers that have been given for her, have been answered, she is here with us, which is the best thing we could hope for. If she has to go home with a few extra tubes, so be it. Times might be trying, but if we can make it through these past 12 weeks, then we can make it through anything. It sure has put our lives into perspective. Justin says, "I have heard that they say building a house is hard on a marriage, I would like to see someone go through this, it is definately much harder." I agree, but I could not ask for anyone different to be by my side throughout this entire situation, he is a wonderful husband, daddy, and best friend. I think everyone should always remember this quote, "Never think that the plan you have for yourself is the one that God has for you". Thanks again to everyone for everything, miss you all, and we hope to be home by December. Cross your fingers!
Love, Jenny, Justin and Jenna