Ready for her first movie debut

Sophia did well again over night although she has been a little more fussy then usual. Being all that she has been through in two short months you'd probably expect her to be crabby. But honestly she is really content most of the time, she soaks in everything that is around her. The nurses are amazed how content she is, they say alot of CDHers are pretty crabby. As you have all read Sophia has been on pain and sedation medicine for a good chunk of her life thus far and we believe that she was having a little trouble with being off of it. Now when I say this I sincerely mean just a little trouble, nothing to worry about. We noticed that she was dry heaving sometimes and that when she moved her arms or legs that they had a slight shake. These things coupled with her fussiness and not sleeping well told us that she needed a little medicine to help her. She seemed much happier since they gave her some. She is also very close to being able to start feeds, we are hoping that she will have them started by Thursday.

Tomorrow she will quite literally make her first movie debut, we have been asked to participate in a video shoot about Cdh'ers. I will be interviewed about the whole experience and they will also take some footage of Sophia in the RCNIC. The video will be used to help people understand CDH and also help bring people to this amazing Hospital. We are really excited and honored that we can be a part of this endeavour.

Sophia's crib

Sophia must have missed her big girl bed. After less then a week post surgery she is back in her big girl bed again. Today during rounds they weaned her continuous sedation medicine to off, removed her Foley catheter, ordered a suppository for her and decided to try her on room air. This is the first time since birth that her face has been 100% tube free. The doctors have said that one of two things had to happen before she would get feeds. She has to either A.) Poop (which the suppository should help with) or B.)have the excretions coming out of her g-tube be clear (not yellow or green/brown in color). Another big step was that I was once again given permission to hold her. She really seamed happy being held.

Patrick would have held her but he headed back to Michigan today to work for two more weeks. Liam and Maw maw are on their way down to stay again while Patrick is away. With how well Sophia is doing we are thinking/hoping/praying that this might be Maw Maw and Liam's Last trip down here.

Ta-DA!!!!!!!!!!!!!!!!!!!!!!!!!

Sophia did a magic trick today. She made her vent disappear. After talking to the respiratory therapist last night we thought at the soonest Sophia would have her vent removed would be on Monday. Well after having another good night, not receiving any additional medicine doses and being weaned off the Nitric the doctors thought she was doing well enough to remove the vent. Sophia agreed with them and is truly enjoying being off the vent. Today she also had her sedation medicine weaned to off , making it so she had allot of awake times, one of which lasted over three hours. Last time they took her off the vent she had to go to High Flow Oxygen then to regular Oxygen. Today she went straight to regular Oxygen and they believe that she'll be off of that with in the next two days. She still has a catheter and her pain medicine. When the pain meds are gone they will remove the Foley catheter. Soon enough she will be eating and in a big girl bed ...

I am feeling better...

Today was as if Sophia flipped a switch. She today really started to look and act more like herself again. Understandably she has been really swollen and sluggish since surgery. The last two days she even at times got really upset at the nurses from time to time when they moved her. Today the swelling really started to subside and she also started tolerating her assessment periods with out extra medication. Due to her being more tolerant the nurses gave her a bath and really seemed to enjoy it. You can see her crazy curls that appear when she is all clean.
Sophia is once again on her way to being off the vent. Her Nitric is once again being weaned and should be off some time tomorrow. If she tolerates that, there is a possibility that she could be off the vent before mid week. Today they also removed her repogal. For the first time since her birth her nose it officially tube free.
If you remember the last time we started talking about feeds, we discussed the need for her to poop. We are once again on poop watch. When she poops they will start feeds again ...this time through her G-tube. The doctors believe it could be a week before her bowls wake up and she poops due to all of the surgery. The good news is that her bowls are starting to make noise and that usually means that the duty is not far behind.

Sophia's equipment

By now you all know our little Sophia and all of her medical procedures. Now we are going to introduce you to her support. The first machine you see below is her Nitric Machine. This is what they use to keep her pulmonary hypertension under control. She was off this machine once already but as part of her surgery was put back on it to control her hypertension since they could not administer the other hypertension medicine while she was having surgery. The Nitric machine is one of the first machines/pumps we'll see go. Then next picture is her medicine pumps. The five pumps administer antibiotics, sedation medicine, pain medicine, Lipids and TPN. The last picture is the respiratory machine. It initiates breaths for her when she is to sedated to do it herself. As you would imagine with such a lengthy surgery she has been pretty sedated the last day and a half to help her with the pain. Another reason she is sedated is because it is not really nice to have the respirator in. Think about how you would like to be fully awake and have the respirator tube down your throat...MMM that's not my idea of fun. All of these machines need to go away before we head back to Michigan. The good news is that they should go away faster then they did last time, but it all depends on how Sophia reacts to the changes. If there is anything that we have learned about CDH'ers is that you have to take it slow because they don't really like fast change.

Recovery day

Sophia had a quiet day, she is as you would guess in the process of recovering from her surgery. She is a little puffier today then she was yesterday but this is very expected with the amount of surgery and liquids they gave her during surgery. Today the occupational therapist and physical therapist stopped by to see her. They have noticed that Sophia has been holding her hands a little differently so they have given her a baby splint for her free hand. It will help hold her hand at a more neutral position thus helping her wrist muscles. She wears the splint for 4 hours, then it is off for 4 hours. This continues throughout the whole day, she'll be doing this for weeks to come. The splints don't hurt her, in fact they will help her not develop future problems.

Successful surgery- fully wired

Today was a long day for Sophia, the surgeons and us. She was wheeled to the OR for surgery around 8:00 a.m. and did not return until around 3:00 p.m. One surgeon told us that while they were in removing scar tissue they could see why Sophia could not move food from her tummy to her intestine and they feel that they have fixed the issue. The surgery also included, removing her Appendix, the Nissen procedure (for her acid reflux), Placement of the G-tube also called a Mallencot and her fascia was closed( tummy hernia). You can see in the picture blow that she is "fully wired" but should with in the next week have a lot disappear again. Most of what you see in the picture below is to support her while she is sedated...When someone is sedated they are less likely to breath on their own so the vent initiates breaths if Sophia is to sedated to do it. She has an Arterial Line that is used to draw blood for blood gas tests instead of doing heal sticks. We are fairly certain that the Art line will be removed in the next day or so. She has a cathider so they can monitor her urine output and should have that removed soon as well. So although there is allot of equipment in the photo below there are really good reasons that she has them and most will be gone before we head home. The one thing that you'll see that she'll have for a while is the g-tube. It is the yellow tube coming from her belly. There is a nipple on the tube to keep it at a 90 degree angle so it doesn't close off. As you have heard in past blogs the first 24 hours is an indication of how she'll do. Tonight she is sleeping peacefully due to the medicine she got in the OR. Tomorrow will be a little harder for her due to that medicine wearing off and having the new pain medicine start. She is one tough little cookie and has amazed the staff so far so we are hoping and praying that she'll keep it up and have a fast very speedy recovery.