Sorry I have not posted any news in the past few days. The internet connection in the room is not the greatest and plus, Jenna has been more awake and clingy, wanting us to be with her more. So, this week she has done well. The have lowered her Ativan, Methadone and Clonidine (withdrawl medications) a little more, and she has tolerated it pretty well. After each adjustment she is a little jittery, but we get through it. They have been giving her increased doses of her bowel medication to help her go to the bathroom. Since she is now on full feeds, it is very important that she poops, because they do not want to have any additional issues with her belly. So, this morning she finally had her (what they call, blowout! haha), so we are on our way to becoming more regular. The GI team decided that they will continue to keep no food in her belly for another 4 weeks, and as far as we know they will do another scope to look at her belly at that time. They are trying to coordinate with the ENT team at the same time, because they are wanting to do a scope of where the trach was placed to make sure everything looks fine. So, we are waiting to find out when this will be. Dr. E spoke with us one day and said that the next step is doing her next heart cath (from his standpoint). Dr. Beekman is leaning to waiting a couple of months because she has been through so much this admission, he wants to give her a break. So, we will see at what date will be best for her. The cardiac team said it will still be a few weeks before we are moved off the floor, they want to keep an eye on her, to make sure she does have any more bleeds from her belly. If at the point she is doing well, depending on what type of support she is on and if she has the trach, will determine which department we go. No trach=A6 cardiac stepdown-Trach=TCC (the trach unit). So, we will see how the next few weeks go. Yesterday was a busy day for Jenna. We sat up in her boppy in the bed, then did trach care, gave a bath, layed on mommy for a bit and took a wagon ride. In the afternoon she slept for about an hour or so, and then PT and OT came in and she practiced sit to stand in the floor. This was a little hard on her, because in her mind she wants to go, go, go. But her legs are still too weak to stand on their own. She realized that she could not do it, so she attempted to crawl. But this did not go great either, it was better than walking, but she still needing help. She was just trying to get out of this place!!! Also, while playing in the floor with daddy and PT/OT, Jenna had an accident. She peed and pooped all over daddy, while sitting in his lap. Of course everyone went everywhere trying to find something to clean her up with, and daddy tried to recooperate from the accident. But, we all laughed after it was all over. Poor daddy. With all of the medicine she has been given, plus she had just had her Lasix and her legs were indian style, so her diaper was a little open. What a mess! By late afternoon, early evening she had a little trouble (nothing too major). The nurse called me while we were out to make us aware of the situation. She said that Jenna was breathing very shallow and slow, and then would periodically have some apneic episodes (basically she would stop breathing for about 20-25 seconds). They watched a little, but her back on the ventilator rate for a few minutes and then were able to get her back down to just cpap support. She stayed on that the rest of the evening. They feel like that she had done too much activity during the day and became very tired and sleepy, which caused her to stop. She did well through the night and went back on her trach collar (mist humidification and oxygen mix) this morning. Later this morning though she started to work a little harder when breathing, so they decided to give her a break and put her back on the cpap support for a little bit. She is still on that at this time. During rounds one day, I spoke with the team about the length of time she would be on the trach collar (which is where she does all of the work herself when breathing) and then back on cpap (which gives her support when breathing out). I expressed that Justin and I were concerned about her over working herself, and felt like it would be best if she was on a routine of being on the collar for 12 hours at a time and if she was too tired that day, make it ten. They said this was a good idea (since we watch her all day continuously and know her limits), and agreed to the schedule. She is also back to the vest therapy where it helps break up the mucous, instead of the cupping way. She likes this better because it makes her wiggle. :)
Mostly this week we have tried to get back to her normal. We have taken wagon rides every day, waved and kissed to everyone in the process. Everyone just oooohhs and ahhhs when Jenna comes down the hall. It is like a princess parade!!! This week also, I became more comfortable with suctioning her trach and cleaning the site and changing the ties (device that holds the trach in). I am trying to establish a routine and prepare myself if we end up going home on the trach. I am now able to get all the supplies together and have someone hold trach for me, while I change the rest. I always have a respiratory therapist with me for supervision, but I am proud of myself for at least trying to get involved in her care. We have been told that the ENT team does not typically like to take trachs out of children in the winter/flu season because of the infection/illness issues. Plus Jenna is more high risk due to her situation. So, we will see what they decide, they said her situation is different (she does not have it because of lung disease) so she may have it removed before we leave. Justin and I are hoping that she has no more issues, so we can still make it home before the end of October. Cross your fingers. This week too, we made another big step. Justin moved forward and decided to suction Jenna's trach for the first time on Thursday. I was soo proud of him, he is starting to become more comfortable with the situation. So, the nurses are trying to help him take little steps, by just watching certain pieces of the process one day and then trying to do them the next. So, we will see, but go Justin!! So big steps for everyone this week. We are trying to get used to everything, and we are soo proud of babygirl for trying to stand. We are just happy to have her here to even attempt to stand on her own. We have been through a lot in the past 7 weeks and are just trying to be thankful for what we have. So, today will continue to be a rest day. If she wakes up long enough, we may play a little. But she has basically slept most of the day. That is ok, we just know what she can and cannot do yet. So, we will continue to keep everyone posted. Hopefully the rest of the day will be good. No big changes for her, just rest. Talk to everyone soon. Enjoy the pics below of her week!!!
Love, Jenny, Justin and Jenna
Don't you just love my curly pigtails!!!!!
Please, no pictures. I know I am famous, but I blow kisses instead!
Here I am on one of my walks, with my gear and of course, my TIARA!!
Seeing the outside for the first time in 7 weeks!!!
Oh, my ride was way too much, I need to sleep.
Are we going on my wagon ride or what???
Again, are we leaving yet???
Yes, I know I am beautiful!!