September 4, 2009

How much more could babygirl endure?

So, yesterday (thursday) started out fine. We missed rounds again, we overslept again (can't imagine why??) so we were told by the nurse that Jenna was finally asleep, she had been up most of the night playing, so she encouraged to go get some breakfast before she woke up again. Before we left though, she said that general surgery was coming in to look at her, which she asked why and she said that just look her over. She said that they increased her Ativan medication back up to 3 because when she was examined by the doctor in the morning and she was "jittery". So, they wanted to give her a little more time before decreasing her levels. We came back and the occupational therapist came by and played with Jenna, this was fun. Jenna stretched her arms and played with her pinwheels. She enjoyed playing with her and waved bye bye when she left and blew her kisses. So, we watched Spongebob and xray stopped by and took a film of her belly. Her belly has been distended (like a pot belly pig) since her scope on Tuesday. Air tends to fill up in the belly, but apparently go away quickly after the test. Justin and I did not know that and assumed that her belly was still trying to go down. Well a short while later, the attending came in, friendly, asking how we were doing and we were cordial back. Then he said, "well you may not like me after we have this conversation". So, apparently Jenna had some "free air" in her belly, but not in her stomach or bowel area. It was located outside of that, in the cavity that surrounds all of her organs, known as Peritonitis (imflammation of the perotineal space surrounding the organs). They showed us on xray and the air was a large amount, which caused concern. She was showing any symptoms (high fever, high white count, vitals unstable), just that her belly hurt when asked and she guarded it some so it could not be touched. Also, she was not passing gas or pooping since before the scope, which is a symptom. So, the attending said that he had contacted GI and general surgery-Dr. Inge about the situation and they were coming to see her. If said that if her symptoms did develop and worsen and the situation was ignored, it can be fatal. So, they were acting quickly. They felt like it was possible that maybe her ulcer in her stomach was open and leaking acid fluid and/or air out into the cavity, which could have been caused by the pressure pushing into her body from the bipap machine, could forced just enough to push it open (the machine is designed to push air into the lungs, but her esophagus also can stay open causing air to go into the stomach and also Jenna is a mouth breather so she swallows air more than usual). But, it was also possible that the ulcer had just barely opened (like a pin sized hole) and then re-sealed itself. But in order to know, Dr. Inge felt the best way to check would be to give her contrast, take a few xrays and then see if it leaks into her body cavity. So, in order to do this, they had to but a tube into her throat to get the contrast in. Jenna is not strong to be on just nasal cannula hi flow so that the tube can be in, and the bipap will not seal on her face to give the correct pressure (plus it may make the ulcer worse), so the only other option was to re-intubate her. Great, right? So, they put her back on the ventilator, started all of her sedation medicines again, and got her settled. They gave her the contrast, did the xrays and within the hour, we found out that the contrast WAS NOT leaking, so that meant no surgery!! Yay!! As Dr. Marino (attending doc) said, she may have finally caught a break and we dodged a bullet. So, they of course will continue the xray daily as usual. And the plan was to decompress the stomach for 48 hours-which is done by having the tube in her stomach pulling air off at the very lowest rate (5) and only intermittent. So, we were concerned about the tube being in there because they had said that it could worsen the ulcer. We spoke with the GI doctor and he said, yes he did not want a tube in there, put position of it was checked on xray, it looks fine, and he said that we have to make sure no extra air stays in her belly, so it has to be there. It is the "lesser of two evils" by doing this, because they cannot have extra air going in there right now because of the ulcer and the free air in the space cavity should go away on its own, but there are going to watch her and make sure she does not show any symptoms of it worsening. So, at least we did not have to have surgery, but she would have to stay on the ventilator for 48 hours to allow the ulcer seal a little better. So, she remains on antibiotics, in case there is an infection that could have possibly caused her stomach to stretch and have little pin holes open, which could have caused the air. They do not want to take any chances with her. So, Jenna rested for the rest of the evening and did fine, no new developments or changes, so this was good. They did her vest therapy that night, which went well. But, she rested fine and we went to go to sleep ourselves.

So, we came in this morning, and of course once again, we missed rounds. It is just our luck. So, we spoke with the nurse and respiratory therapist this morning who said that the vest therapy is being stopped for now. The pain management team is being consulted to discuss her sedation concerns, because they do not want to get to the point we were at previously with knocking her out completely, but keeping her comfortable. He said that they are concerned that by placing her back on the bipap machine to quickly, that the ulcer area could be pushed open by pressure. So, the best option is to keep her on the ventilator tube, but change the settings to cpap which causes Jenna to breathe on her own and move muscles, but if she needs assistance, it will give it to her. The length that he was told that Jenna would be in this state is 2 weeks, until the next time they look at her stomach by scope (the original plan of no food or tubes for 2 weeks) or at least until they are comfortable with her being on the bipap again. So, here we go again, somehow finding her happy place of being comfortable for this period of time, which is going to be a challenge. This morning she was sleeping when we came, but is now completely awake and irritated from the tube-which I would be too. So, we are just trying to keep her happy.

So, yesterday was difficult, another setback unfortunately, but hopefully the last. We just hate that there is one more thing for her to go through. It stinks and we hope that will end soon. We are so tired and frustrated, but what do you do? She is in the best of care, the best nurses, doctors, staff-we could not ask for better and just place her care with them and hope that she gets better soon. So, keep praying for us, especially Jenna. We will keep you posted on her status.

Love, Jenny, Justin and Jenna


  1. Thank you so very much for keeping everyone updated on your amazing little girl, Jenna. My daughter and I check in daily to see how you guys are and continue to pray for you every night.

    Your story has truly inspired us as a family to hang onto each other just a little tighter and count every single blessing, no matter how small...

    Hoping that better days are just around the corner,

    Amy in New Orleans

  2. Guys, wow. I know sometimes you just want to say "leave her alone!",at all at the same time, you know it's in her best interest and look forward to the day you are back home with your happy healthy little girl. Praying for God to wrap His arms around Jenna and comfort her in ways that only He can, and praying for Him to hold your heart and sustain your sanity while you watch and wait. Sending love from TN, The Howards.

  3. Thanks, Jenny and Justin, for being candid and helping us to realize how difficult it can be when you cannot help the one you love the most You are right, she is in the best hands- Jesus. He also gave wonderous talents to the many doctors who care daily for our precious critical care babies. We pray daily for God's strength to envelope and keep you and His healing grace to comfort and sustain Jenna. May you all come home soon and enjoy your special times again.
    Jo, Don and Seth

  4. I stumbled across your blog this morning and wanted to thank you for sharing Jenna's story. Our daughter, Grace, also has TOF, PA and VSD. Our family will pray for your family.

    Marchese Family in Arizona

  5. Well, on a good note we are happy little Miss Jenna didn't have to have surgery. We know you guys are exhausted and just want to be able to take your baby girl home. Try to stay positive and that everything is in God's hands. He is watching over the three of you!! We pray that God will continue to give you three the strength to endure each and every day.

    Your Friends,
    Lori, Justin, and Tristan