October 12, 2009

Another surgery is in the works.....

Soooooooo.....as per the title, you will see the we are yet preparing for another surgery. Yesterday went ok, it started out with me coming over early in the morning, while Justin rested. I started my day with the nurse coming in and right behind her was the attending doctor. He wanted to "chat" about what is going on with Jenna. Apparently around 6am (sunday) she had another episode of vomit, which had blood in it, more than the times previously. So, the plan was stopping her feeds and holding them until GI and ENT were consulted again, to determine any more thoughts on what could be happening. Also, he was passing all that had occurred this week and was recommending the G tube be placed, because the bleeding is not going to stop until the tube is no longer there. She has to be on the tube until she is off pressure support, because of the risk of aspirating, so who knows how long that will be. So, GI came in late morning, discussed her situation and that she was just scoped on Friday. The doctor said that it seems that there is an irritated area in her esophagus (a polyp) and plus two small areas where the NG tube lays at times in her stomach. She said that from her stand point, it seems that Jenna is really sensitive, and the NG tube is rubbing these areas just enough to make them bleed. Based on her history and the length in which she will need the feeding tube, it would be best for her to have the G tube placed in her stomach. There is also the option of putting what they call a Nissen in, which means that they place a clamp around the area between the esophagus and stomach, to narrow the area to help with reflux. She is not sure if the surgeon (Dr. Inge) doing the procedure, would think this would be necessary. But, long term the tube is the best thing for her. So, ENT came in later in the day. They wanted to scope her nasal passages and through her trach to see if there was any bleeding coming from these areas, to rule out this as the possibility of the cause. So, this was done at bedside and required sedation to calm her enough to do the procedure. So, needless to say, this was a process in itself. Of course Jenna broke through all kinds of narcotics, Versed, Morphine, Methadone, multiple doses of these and then was given Etomidate (sp?) twice, which is used to "knock out" the patient, but Jenna was still going after the first dose, after the second she went out for about 2 minutes and began waking up. But she was asleep long enough for the ENT doc to put the camara in and look around to determine if the areas were irritated. Of course, during this whole thing, Jenna was cracking everyone up. She was looking around, smiling and being goofy. As the time went on she just got even loopier, being funny and cheesing it. Eventually, she was putting her hands up like "what's the big deal?" The fellow on just kept saying, is she asleep yet? He and the ENT came in and her eyes were closed, but once they turned their backs, Jenna was pushing her self up in bed to sit up. They turned around and were like, "WHAT?!?!" So, like I said, it was an event in itself and everyone was just laughing ar how silly she was. The test ended up turning out fine, no issues, not the cause for bleeding. So, she fell asleep about an hour later, for a few hours and Justin and I stepped out for the afternoon/evening to get away for a bit. It was nice to get out and try to be "normal". Hospital life sucks.

So, this morning we rushed over here, because it was a new week with a new doc. Well, things were wild on the unit today, so they did not make it to rounds with us until 12pm. Even then, the attending got pulled away from everything that was happening. Mondays are always bad it seems. So, Jenna played well this morning with OT and Speech. She rested on daddy for a bit, watching tv and napping. SO, the plan for her today was to do trach collar trials again, the fellow was wanting to do longer than we felt comfortable with, but we insisted that we felt she needed to be on a schedule for these trials and she would be good at a max of two hours at a time. SO, he said, how about 3 1 hour trials today. We agreed, and then we will work up over the next few days. She remains on cpap support through the day (8a-8p) and then at night when sleeping at a rate of 10 on the vent. Cardiac wise she looks good, still on Lasix. GI wise, she is still going up on her feeds every 6 hours at 2ml. They are still consulting with GI, Dr. Inge about the G tube placement, when and what type. So, this afternoon she did ok, until about 3p and she had an apnea episode, where she paused in her breathing 3 times in about 15 minutes, and then once she was placed back on her rate, she rode the vent for a few minutes. They thought that she was just realllllllly tired, because her heartrate was lower than norm and her sats went down because she was not breathing as deep. So, she slept from about 12:30 to 6. Great, up all night again. So, around 7 she was laying down and she got sick (second time today), so she was a mess. We decided to go ahead and wash her hair, give her a bath and do trach care. She did pretty well for the most part, just tired. After this the attending Dr. Marino stopped by. He wanted to talk to us a little about the situation with the G tube. He said that he discussed with Dr. E about her situation and the team is in agreement that she needs the tube based on what is occurring. He said that he is in contact with Dr. Inge and Dr. Putnam (if he can be reached, he is out of town) about when and what type should be placed. He said that the discussion about the Nissen is also up in the air. He said that right now, they do not think that she needs it, but they are also going to do pre tests to gather figures before surgery. He said that his hopes are for the tube to be placed this week and if not, next week. He said, "You know me, I push for what I want." Which we know all too well since he had her trach scheduled in less than 12 hours. SO, they are planning on doing a few tests to look at her anatomy to make sure of everything and plus to determine the amount of acid which goes back up into her esophagus when food goes in her belly. This will help with the decision of the Nissen. So, he said that she should be getting food within 24 hours after surgery and at that point she should be to full feeds, so they will increase back up at a slower rate. He said that when the tube is placed, the original piece sticks out of her belly some, but once the stoma is in place, then they put a button in, which is flush with her skin. He said that the tube goes through her lining, muscle, and in her stomach and just hangs there, not laying against anything. He said that she will probably pick around a little at the site, but as long as we keep the area clean, we should be fine. He knows that we will do a good job taking care of it he said. So, he said that the goal is for her to make it to her max feeds, or calorie intake which is healthy for her. They want the tube to be in until she is strong enough to take care of herself, eating more and better. We told him that she was not a great eater before we came in, and not even on the growth chart for her weight. He said that he feels like at this point, her trach will come out before her G tube. He said that she could have it in 1-2 years, depending on how strong she gets, and is able to maintain the calories needed, able to grow well, etc. Also, he is not sure if the surgery will be open or laporascopic, depends on what Dr. Inge thinks is best. So, we will see. Something else to learn about, to take care of this. So, we will wait until they schedule her tests this week. This evening she vomited again, within an hour of her feeds going up to 31ml/hr, so the fellow decided to decrease her back to 28ml/hr for the night and begin again in the morning increasing her. No blood in the vomit, which is good. A concern we have at this point is the goal they want for her feeds, will she be able to maintain it once she makes it there via the tube, once she is taking food orally. She came in taking 22oz a day and the goal is 32, so we are not sure if she will ever be able to maintain that amount, much less the calories. So, we are going to talk to the dietician tomorrow about this, since she is now 29lbs, and the original goal was 24. Maybe the goal will change now, who knows. So, she decided that she wanted to play some, then set up in my lap, and then back in bed. So right now she has finally fallen asleep. We are going to get some rest. Keep praying for her, especially since we have to have another surgery again. THanks to everyone for everything, it means so much to us. Love you all.

Love, Jenny, Justin and Jenna


  1. wow- wounds like a busy day on the unit! keep your chins up- jenna will do well with this....and so will you! from what i gather from other blogs this isnt too uncommon for these babies. love much- stacey

  2. Your little girl is a trooper to go through all of this! You all are wonderful parents. I am glad you all find the time in your busy schedules to keep others updated. I haven't talked to Justin in years but my heart aches for you all to be going through such a hard time. But years from now you will have great stories to tell your little girl what a miracle she really is. You all are in my thoughts and prayers!!!

  3. my oh my guys...thinking of you and hoping that this is the final step before you get to go home. Praying that this goes well and that she is back to normal soon. Try and hang tight, it is almost over! I promise to make some good meals and bring over some bigger clothes! Love ya, marci

  4. Wow, poor little girl just can't get a break. I am just amazed at how strong the three of you are being through all of this. Please know that we are praying for you daily. Lots of hugs and kisses sent your way.

    Your Friends,
    Lori, Justin, and Tristan

  5. We are just speechless. Words can't describe how we feel for your family. We look up to you because you all have been through so much,but have been so strong. Our best advice is to stay strong and positive. Please let us know if we can do anything at all for your family. We pray daily that Jenna gets better so you can go home sometime in the near future.

    Hugs and kisses from the Wheeling bunch,
    Brent, Lisa, and Slaton