Sorry I have not posted recently. I was really hoping that 2010 would start out better than 2009, not so sure. Jenna has continued to be sick off and on. After Christmas, within a few days, she had yet another fever. We went to the pediatrician, who felt it was best to do another chest xray. We started a steroid also to help clear some more of the fluid in the lung. So the results came back well. Her pneumonia was clearing. Later that week Jenna started to complain of belly pain, and had increased loose watery stools. Lovely. So, we spoke with the pediatrician, who requested that, yet again, we head to their office. So, off we went again. This time, they felt that her secrections seemed to be more upper airway, but to be sure we were going to do another chest xray. Also, they felt that she had developed the stomach bug which would account for her belly pain and stools. In addition, she had a sore place at her G tube site. So, she was not a happy camper. The xray this time came back even better, no indication of fluid at all. Yay!The doc still wanted us to follow up in a couple of days, so we saw them again Monday. Jenna seemed to be in good spirits, only issues were still some mucous secretions, and now she was requiring oxygen at night. Her cultures that they had done over the weekend grew a couple things, which can be common in kids with trachs, but not necessary to treat. So, they checked her out and the lung exam showed concern. They said that her right side sounded more crackling, which could be an indication of fluid or pneumonia. So they wanted yet ANOTHER chest xray. But, they wanted to be speak with her pulmonary team at Cincy. So, later I got a call saying to go have the chest xray done just to make sure that something has not come back. Also they wanted her be seen by them. We were already going the next day on Tuesday the 5th to see the GI team, so they worked it out and coordinated us to be seen by pulmonary. We were called late on Monday with her results from the xray. It showed that she had increased fluid (pulmonary edema), pneumonia, and congested blood vessels. I could not believe it, were we ever going to get better.
So, on Tuesday we made the trek to Cincy. Pawpaw drove us since Daddy was not able to get off from work, which was really nice. We packed bags, because I had a hunch that we would be staying. So, the entire way Jenna slept, being hooked up to her vent and oxygen. She seemed very dusky (color changes) and tired, so I was a little concerned. The appt with GI went well, we even stopped a few meds, but added a another because Dr. Putnam felt that her C-Diff bacteria never went away, so we had to take Vancomyocin for 14 days. He said in some kids it can take a year to clear up, since she has had it more than once. ARE YOU SERIOUS?!?! So if she faired well and her vomiting did not return, then we did not need to followup. Yessss, one less doc to see. Later that afternoon we saw Pulmonary, Dr. Amin. He reviewed her information, examined her and discussed how she has been in the last weeks. He was concerned with her status, and was uncomfortable sending us home (3 hours away). He said he did not want to dissappoint me, but he felt it would be best to keep her. I said it was ok, because I was prepared. So, that's right. We are back in the hospital. ARRRRGGGGG.....We just want her to feel better. :) He felt that it was possible that her heart was the issue, since her fluid keeps coming and going. So, we were admitted that evening on Tuesday to TCC. Word traveled fast that we were there and we had visitors by that night. So, Cardiology came by that night. Dr. Norris and Beekman spoke to me about her situation. They felt that the main cause was her heart, and that she most likely had "caught a bug". But they were going to do an echo the next day under sedation. She was placed on continuous oxygen, started on iv antibiotics for safe measures, cultures done, etc. She clearly did not feel well and just wanted to sleep.
So the next day (yesterday), they performed the echo. This was fun, since of course, Jenna did not want to go to sleep. I told the nurse that would have to give her more than normal medication amounts, and she finally listened when Jenna was still sitting up after 30 minutes. So, once she got more and I held her, she passed out. They did the test while I was holding her in my lap. :) While waiting on these results to come back, the nurse practitioner Kim came by to let us know that her culture had grown a virus. She was positive for Human Metapneumo Virus, which is in the same family as RSV. What is typically a common cold for us, turns into this for Jenna. So, commonly in immunocompromised kids they develop additional issues with the virus. One of which is pneumonia. So, we are waiting on this result to return today. No word yet. If she does not have anything, they will stop the antibiotics, make sure she is improving and send her home. Typically these viruses have to run their course, length unknown. But, if she also has a bacteria infection, then they will decide on the antibiotic regiman depending on the type she has and which kind can be taken (oral or iv). If they are not able to give oral, we will start the iv, but they will have to place a PICC line in, due to how damaging antibiotics can be on ivs. She has already blew 2 since we got here. She is also a horrible stick. The pulmonologist came by last night to discuss the virus further. He said that once you have this virus, you will be most likely for it to return when you get sick. The balancing act with Jenna is to make sure that it does not worsen and she get pneumonia or bronchitis. Also, when it is running its course to get better, it is like a rollercoaster. One day she will be great and then a few days later she is terrible. I asked for advice on how to keep her from getting sick so much. He said that no one sick around her, if you have been sick recently do not kiss her, get in her face, touch her trach. He said that everyone needs to do frequent hand washing, plus complete avoidance of smoke (including clothes, hair, etc.) He said it can trigger her to have issues more with the smell. He felt like that she most likely has a bacteria infection because she seems to be improving so much with the antibiotics, she would not be changing much if she just had a virus. So, hopefully the "big guns" have worked. Some how I feel like Jenna will want the highest thing and we will have to do iv type. This could last up to 14 days. God help me. They said that once they find out what they can give her, if oral, they will watch her for a day or two and if she is fine, let her go. So I don't see us leaving before the weekend, considering we will still do not know the full game plan.
Her cardiology team stopped by yesterday evening to let me know about her echo results. He said that her echo had changed from November. Her blood pushes from right to left sides normally, but now it is going both ways, left to right also. This accounts for why her oxygen levels keep dipping down so much. Also, right side fluid buildup is from where her right side heart is pushing blood out, but it is not going through due to the infection, so it causes it to back up. Thus making her right heart "unhappy". So now her pressures on the left and right are the same, which is not what they want. However, they feel the situation is completely related to her infection, so once it clears, this should resolve too. We will do a repeat test at that time. This situation explains why she does not want to do anything (walk, crawl, talk, play). Her heart is working so hard to keep up that she cannot do anything else. But it is not long term. They would like for her oxygen levels to be higher, so she is now on 1 1/2 liters of oxygen to maintain her sats in the high 80's.
Last night she started to improve. I got us Chinese food (her fav is Lo Mein noodles), and she loved it. She even ate a half of crab rangoon! You go Jenna! She is wanting to play more, which is great. She even started smiling and blowing kisses. Clearly something is working to make her feel better. Today she is even happier. We have played, took pictures, watched cartoons, visited our friends. She is even back to doing her cheesy grin :) We have had lots of visits from CICU, they are all so happy to see her. Don't worry though, they are keeping any illness away, everyone has to gown and mask that comes in the room. We don't want any other sickness around.
So she has been sleeping for a while now. She will probably be awake once I make it back upstairs. I will try to keep everyone posted. Justin is at home because of work, so I am here alone. This makes it a little more difficult to leave since I am the only one here. So, I will try to post again as soon as I can. It was great having my dad here with me while I was having to get her admitted and I am glad he made it home safe. I here that it is snowing lots at home, (here too!) and I want everyone to be safe. Start praying for babygirl, that she gets better soon so we can go home! Thanks everyone! Talk soon!
Love, Jenny, Justin and Jenna