September 22, 2009

Yet another hurdle possibly...will it ever end??

Hello everyone,

Just wanted to give a quick update on babygirl. Since Sunday she has been just resting quite a bit. She is still trying to catch up from her fun time outside. Yesterday they lowered her Methadone some, which she had a little trouble tolerating at first, but got used to it. They did a chest xray and noticed that it looked "a little wet", indicating a little fluid, so they gave her an extra dose of diuril (diuretic) to help pull the fluid out. This helped, she peed lots later after getting it. She continues to still get the medicine to help her poop each day, Colace, Miralax. Finally today she did do better in this department, so hopefully her belly will start feeling better soon. Poor thing, it is all poofy. :( Again on xray it was noted that her diaphragm is up again. Last week they were not too concerned with the situation, but she seemed to be making strides respiratory wise so they wanted to watch the situation. Well, since she became very tired over the weekend, required her support ventilation (cpap) more and had an apneic episode, they have started to become more concerned. The new attending for the week, Dr. Angie Lorts came on yesterday for the week. During rounds they discussed her respiratory situation and later she discussed it briefly with me. She said that the situation with her diaphragm has been in "the back of everyone (doctors) minds" since it showed on xray over a week ago. She said that they were hoping that she would be making quicker leaps (respiratory wise) since she now has the trach and should be more stable. Since Jenna is still requiring quite a bit of support through the ventilator (cpap) at night and oxygen via trach collar (humidified air at 50%) through the day, she has basically in a sense plateaud. She was moving forward, being able to do trials off of the support and being weaned, but then when they moved her out to being on the collar in the day and support at night, she was not able to be weaned. After being on the collar about 12 hours, she is too exhausted and has to go back on the support. So, she said they are concerned that her diaphragm is hindering her progress. Most kids do not need their diaphragm to function completely for daily activity, but Jenna is different. Now that she is attempting to be physically active (playing in bed, taking wagon rides), they are concerned since she is needing the help, that she will not be able to go home without the ventilation help and be a toddler (as before we came in). They are also concerned that with the diaphragm going back up, there is not much "reserve" for her if she gets sick, in order for air to flow fully through her lungs. Her blood gases are a little higher than they would like, 66 and norm is 40's/50's. She is normally a little higher, but this is higher than her normal. So, she said that they were calling the pulmonary team now to evaluate her completely, to make sure that she does not have any underlying issues in her lungs to cause her to not be able to come off of the support. Also, they were consulting Dr. Inge (surgeon that did her first plication surgery) to look at her recent films to determine what may have caused it to go up again. So, these groups will look at her and give their recommendation on the situation, the team will discuss the situation and determine her next step. The question is can they wait and see if she improves or does she need the diaphragm repaired again in order for her to function well long term. She said if they do decide the diaphragm to be fixed again, then they will opt to do the thoracotomy (open) surgery this time instead of the surgery before (thorascopic). So, pulmonary came in yesterday afternoon and looked at her. He said that they are recommending that a ventilation perfusion scan be done, which looks at the amount of air going into her lungs compared to the bloodflow going into her lungs. This will determine if this is the issues as to why she is needing the support. He said that her situation may be completely mechanical, which means it is the way her body is made and there can be no adjustments. In rounds yesterday evening, Dr. Lorts said that Dr. E and Dr. Inge discussed her diaphragm situation and they are not sure if the diaphragm relaxed and stretched from the surgery or if the stitches came undone. She said that the entire team is leaning toward the surgery being done, and Dr. E. could possibly do it as early as next week. But they are still discussing what to do. In rounds this am, they said that her bronchcoscopy and larygnoscopy will be next week on the 29th, not the 23rd (schedule miscommunication). This is to make sure her tissues are healing from where the vent tube was in her throat. No changes to her medications today. Last night she had another apneic episode for about an hour off and on. She was on support so she was able to breathe (it would trigger a breath for her), they placed her on the ventilator rate to help her for a little bit and then back on her cpap later in the night. They are not sure where the episodes are coming from, just possible that she is overdoing it through the day or maybe related to her Methadone because she got it right before it happened. But, the one before was not anywhere near the medicine being given, so I am not sure. The only thing she did activity wise yesterday was sit on the side of the bed for about 1/2 hour with PT. This was enough to make her tired. Dr. Inge came by this afternoon and talked to us a little about her diaphragm. He said that he did look at her films and her diaphragm has gone back up, almost in similarity to a month ago when she had her first plication. He said that he does not feel that the stitches have come loose, it is possible that her diaphragm relaxed and so the stitches are not as tight, but he wants to speak with Dr. E about the situation. He wanted to make sure that we did know that they were discussing doing surgery again, but thoracotomy (open incision). We said that we were aware that it was in discussion, but no decisions have been made. He said that if it were to be done, then it would be a setback for her. He said that he would like to do the surgery with Dr. E. together it it was done, but they are going to talk. He feels like it will be beneficial to her also, future wise. So, in rounds, they said no major changes, just waiting on the team to make the decision on her respiratory status. Cardiac she is doing great, still waiting on her stomach to heal. Dr. Putnam is aware that they are going in for a scope of her throat next week, but still does not want to go into her stomach. He wants it to heal more. Today, she mostly rested, but when awake she was very irritable. She wanted no part of anyone touching her at all. She was very frustrated and wanted you to set next to her, but not touch. So, that is what we did. This evening though, the attending felt that maybe she was really tired and this is why she was aggitated. So, she decided that she needed to go back on her support early and see if this would help. So, she went on about 6:30p and after that was much happier. She received Tylenol a little before this too for her pain from the flu shot she got, so this helped too. Mommy and Daddy got her flu shots today too! Mommy also got to hold her in her lap for a bit which was nice, babygirl just snored away. :) We had asked to speak with Dr. E sometime today, but he had a very busy day, two cases and we thought he was home, but he stopped by about 8p and said he just completed his cases. He said that he wanted to speak with us extensively about the situation and felt that that it would be best to talk tomorrow so we can talk longer. We told him that this was fine, he needed to go home and see his family. So, we will be talking tomorrow about what he thinks regarding her diaphragm. So, we have our questions lined up and will talk to him between meetings sometime tomorrow. So, we did all of Jenna's care this evening, trach care, helped with her new PICC dressing, changed the dressing on her face (her feeding tube). Now she is resting, she is very tired from all of the business. So, hopefully she will rest well tonight. We will keep everyone posted on her and when we speak with Dr. E. tomorrow. Hope all is well and keep praying for babygirl.

Love, Jenny, Justin and Jenna


  1. Hi - just wanted to post and let you know I am so happy Jenna has improved so much in the past couple weeks, and she will keep improving too! God is in control. Jenny & Justin - you are incredible parents. Keep leaning on God. Bless you all and the hospital staff too. Jerri Gibson. : )

  2. Thank you for this update. As you know, our thoughts and prayers are with you all. Give Jenna a squeeze and a kiss for Meme.God has brought her this far and will continue to do so. I pray for special strength for you and Justin.

    I love you,

  3. jenny and justin- just wanted you to know that we are keeping up even though we are OOT. i am so sad to hear that she may need another surgery. i am sure you are both reeling and trying to reign in your feelings. Babygirl will do great! call if you need anything. love, stacey

  4. Still praying... I hope this isn't a major set back... Hang in there... She is such a cutie and sooo strong willed for such a young age... What a little trooper.... You all seem like wonderful parents.... May god give you strength through the difficult times....
    Summer :0)

  5. Jenna, my hero, the right things are going to be done that is the best for you!!! I absolutely know you and God have this wonderful plan for the future and He's going to help you get better, bigger and stronger!!! I love you and your Mom and Dad like there are no words. Keep fighting, Angel!! You 3 inspire all of us
    Grandpa Cliff

  6. We will pray that God continues to give you all three the strength to get through this journey. You are all wonderful people and deserve only the best!!!! Hugs and kisses sent your way.

    Your Friends,
    Lori, Justin, and Tristan

  7. We pray that God helps that doctors with this important decision. We know it seems like another hill to climb, but hopefully this will lead you to the path of full recovery. Justin and Jenna, we know you must be emotionally and physically exhausted. May God give you courage, faith, and strengh to endure in these difficult times.

    Brent, Lisa, and Slaton

  8. Hi, Jenna, Jenny and Justin,
    We continue our prayers for you. Be strong and fully rely on God. You are in the best care and are greatly loved. Thanks for always letting us know how you are progressing.

    Love, Jo, Don and Seth

  9. Praying for the three of you. I love the pictures!

  10. JJJ,

    Praying for you always. I love you and will be there whenever/whatever they decide.
    Love, Aunt Missy