September 8, 2009

Not a situation which we were expecting....

Hello everyone,

As I stated Sunday on the post, we have a had busy last few days. So, I will try to catch everyone up on Jenna's status since Friday. Here we go.....

Friday Sept. 4, 2009

The last time I blogged, Jenna was irritated from her ventilator tube, and was having trouble becoming comfortable with her tube. They ended up giving her some more sedation medicine, which helped and she finally relaxed enough to rest. Justin and I were fortunate to have a visitor from home come up-Marci, Jenna's development specialist and a great friend!-and take us to a local but nationally known grocery store, Jungle Jims. We had a wonderful time there, ate a great lunch and came back to the hospital around 4:30pm. Jenna seemed to be ok when we came back, but while we were gone, they had placed a new device in place of the tape holding the breathing tube in, which was a lot less harsh on her skin. This was not as secure as the tube, but they really did not have a choice, because they were not able to continue putting tape on her skin, but it was bleeding/oozing from removing the tape and reapplying and trying to keep everything in. So, the unfortunate part of the device, was that it was not completely secure, so when she got upset and started to move around a lot, the chance of the tube coming out went up. So, they were trying to avoid this, but were having trouble keeping her calm, she was very irritated. So, the doctors came by early before rounds to discuss the plan of her care. Dr. Marino said that the entire group had conferenced regarding her situation. He said that in order to keep the original plan of making sure her stomach heals (no food for 2 weeks), the ventilator tube has to be in since she cannot be on the bipap machine because it forces air into her stomach which could cause her ulcer to open her stomach; she needs to be able to heal respiratory wise, but stomach wise as well. So, the decision from the group was to perform a tracheotomy on her. This is where they cut open into her neck (very small incision) at the vocal cords and place a device in, so that she can breathe through this and instead of her mouth and nose only. A drawback is that while she is on it, we cannot hear her talk. :( With this device they are able to place her on bipap settings on the machine since the trach only goes into her airway and not her stomach. The bipap machine was a mask on her face that made her airway and esophagus open up because of the pressure, forcing air into her stomach, which was not good for her stomach. The goal is to start healing her respiratory wise while her stomach heals. They hope that her stomach will heal shortly so that they can start feeds again. Also, they felt that she was having a continuous cycle of issues and typically when children have trachs put in, they bounce forward quicker. The incision also heals quickly on its own, no new surgery needing to be done to close it, the hole is probably as small as a pencil eraser end. This way she would be a lot less irritated from the tube in her throat, not have to be continuously sedated and paralyzed (so she would not pull the tube out), and she can be awake, working with physical and occupational therapy, trying to get better. The attending doctor felt like that if she is not trached, then we would not be going home for another 3-4 months. But with this being done, then we are still on the route to going home in 6-8 weeks. So, the news of the situation was very shocking, not something we were expecting at all. Dr. Marino sat and talked to us for some time about the situation. He said that it is a temporary situation that will get us through the current situation, so that she will get better faster. He said that his hope is that she will not have to go home on it at all, but if she does, just to be on cpap pressure (this is where she has an extra boost of air pressure when she breathes out) at night only. He said that if she does have to go home on it, then it should be out in less than 6 months. Most of these children do very well, and her situation is not like a typical child that has lung disease. So, we are hopeful that she will do well with it, and start moving forward in her recovery. The surgeon that would perform the surgery is an ear nose and throat doctor, which we were told that this group is one of the best in the country, which made us feel more comfortable. So, Justin and I decided to take the recommendation of having the trach put in, since we felt that this was the best option in order to help her recover. We were nervous about the situation, but felt that this was best. We did not think that it was fair to put her through being on sedation medifine for another two weeks. So, the attending wanted to have the surgery done as soon as possible. He said that ENT surgeons do surgery on the weekend and were on service this weekend, so he called and she was on the schedule for Saturday morning. So, here we were, preparing for another surgery, her fourth in 38 days. Very overwhelming. If we do by chance go home with the trach, we are extensively trained on the care of being on a trach, to the point where feel comfortable. Two people have to be trained for these situations. There is a special unit here in the hospital that does this for families, and we will go there and then home. Hopefully we will not have to.

Saturday September 5, 2009

So we arrived early this day, to prepare for surgery, since she was going to be one of the first cases. The cardiac anesthesia team came up around 8:30, gathered everything together, and we headed to the OR. We met Dr. Argjamond (sp?) the surgeon placing the trach in briefly before the surgery, and he explained the surgery in detail and that they would be doing a scope prior also to make sure everything looked ok. This was close to 9am and she was out by 10a. We spoke with him about how the surgery went, he said that she did fantastic, no issues during the case. He said that when they scoped, they did notice that around her vocal cord area/opening of her airway, there was some "flattening" in the lining. He said that this was an indication from where she had had the tube in for a long period of time and it can eventually cause some scar tissue. He said that he felt that they were in the early stages of this, but wanted to do another scope in 3 weeks to make sure that the irritated area was healing. So, that is on the books. So while they were taking her upstairs, we cleaned out our room, because we were the only child left in our "pod" on the unit, so they moved us to the other side, with the other patients. A little bit of a task, but it is ok, because we went from a shack (the smallest room on the unit) to a penthouse (the biggest on the unit). Hey, when Jenna does it, she does it right. Way more room to move! So, now we just have to redecorate :) We saw her after about an hour or so, this was a little hard at first because we are not used to a trach-we do not know anyone with one-so it was hard. Plus, this is our baby and we just were sad for her. But, she seemed so much more comfortable, no jerking all over the place, just laying quietly. She did say that her neck hurt, but that is to be expected. By the evening, they had her settings on the ventilator machine down to 5 from 20 on the rate and her pressures were at bipap settings. So, she was just getting a little boost every 5 breathes on the ventilator, but this will eventually come off once she is strong enough. Her morphine drip came down to 0.4 from 0.6 and she did well. The only other change for the evening was to have a new PICC line placed, the one she had the area where medication is put in, the port cracked. So now it is in her right arm, but she did well in the process. They also did trach care for the first time and she did ok.

Sunday, September 6, 2009

We came in this am and she was resting well, had all night. This day was basically just a day to help wake her up a little more from yesterday. She has even tried smiling for us, which is so great to see her face! She is healing nicely from all of the skin break down on her face.They made a change of her Ativan medicine, she was getting 4 every 2 hours, but they stretched her to every 4 hours. She did well with the transition. Also, they decided to try and come down on her oxygen settings on the machine, she moved down to 40 and did well. We saw her open her eyes a few times, but mostly she just tried to rest. This was ok, because now she seemed comfortable enough to do that. She still has not really acknowledged the trach being in, she just knows that that horrible tube is not down her throat anymore. The only tube that is there is a small ropogul ( a tube), which helps keep extra air off of her belly, very little drainage has been coming from this also. We tried to let her rest for the most part. We left the hospital for some time, and went to the IKEA store, which was a nice change of scenary. It is a cool furniture store, and we got lots of ideas for in the future. So, the day was mostly quiet. We watched the fireworks that evening, which was fun, but wished babygirl could have been there, because she loves them. Maybe next time. Today was sad because Nonny, Meme and Pawpaw all went home. We enjoyed their stay, and it helped a lot since we had so many new changes going on. On a funny note, the nurse today tried to turn off SPongebob on the tv, because Jenna appeared to be sleeping and she thought it would help. However, Jenna was actually playing what I call "possum" and not actually asleep and as soon as it went off, she flew her hand and pointed at the tv (like, put it back on!!), so the nurse obliged. We thought that this was funny.

Monday, September 7, 2009

So, again, today was a day to help wake Jenna up a little more. Today, they lowered her Morphine drip tp 0.2 from 0.4, she did well from the change. They were able to lower the oxygen on her machine down to 30 today, which is good. Room air is 21% so we are getting there. The new attending said that he did not want to rock the boat with her, so we were going to be moving slow. They said that they wanted to contact general surgery to discuss their thoughts on when she could start feeds again. They decided to call them on Tuesday after the holiday to discuss the situation. Dr. E her heart surgeon feels that she has done so well, that she is ready. He also said that because of her heart, it would be fine for her oxygen level to be in the 80's, not always in the 90's so she would be fine to lower down in the level. So, she is maintaining for now. She did wake up more today, and sat up in bed while we were out and played with occupational therapy, but after about 15 minutes she fell asleep. They helped her sit up, changed her bed and watched tv together. The nurses said that she is finally getting to actually sleep regularly, not on sedation. So, she is just trying to catch up. But she did well today, and we can only hope that for tomorrow. Today was sad again, because more family left, Aunt Missy, Aunt Stacey, Uncle Mike and cousin Sophie. We enjoyed them being here and it helped take our mind off of things.

Today September 8, 2009

We slept in this am, go figure-we missed rounds. We did not make it over here until about 11. So, we had to catch up from everything. Occupational therapy came in, and worked with her some, which she attempted to play. Also, we got a note from the night nurse saying that she did well, she even had time to do her hair again, YAY pigtails! The nurse spoke with general surgery about starting her feeds, and they said that they would be doing a test with contrast (the one like last week) to make sure her stomach is not perforated and possibly start giving her food via the tube. So, we spoke with the nurse, expressed our concern. We were under the impression that the goal was to wait two weeks, do a scope and see if her stomach was healing, then decide on food. She understood, expressed the same concern and the let the attending doctor know. He came by shortly, the new one on this week is Dr. Chima. He said that he was speaking with general surgery and with GI team, Dr. Putnam. The plan is to possibly do the contrast test, verify if everyone is on the same page of her care. I informed him that even before her perforation last week, the plan of no food was for 2 weeks and do a scope. He said that he is talking with the team, to see what they decide. He said that he did lower her Morphine drip down to 0.1 and stretch her Ativan medication out to every 6 hours, back to her original dose plan for her withdrawl. They have given her extra Diuril (a water pill) to help because she has a little extra fluid on her for the past two days also. Later the doctor and fellow stopped by again and let us know that they spoke with Dr. Putnam-GI doctor about starting her feeds. He said that Dr. Putnam was agreeable to do the contrast test and if everything was ok, then she would be ok to have a NJ tube put in. This is different from before, it bypasses her stomach and is placed in her small intestines, so it will not be just sitting her stomach, rubbing against her ulcer, the tip will in the intestinal area. They have to do an xray to make sure it is in the correct place. So, we will see how this goes. Justin and I are a little nervous, because we are concerned about her ulcer, but the GI doctor is ok with the plan, so I hopefully it will go well. The physical therapist stopped by this afternoon and attempted to play, but Jenna did not know her and she is apprehensive about new people, and she was too tired also to play, but she is going to stop by tomorrow. All of the nurses have been visiting her, now that she is opening her eyes more. They said that if it is ok with mommy, then they want to paint her toenails! They hope to do that soon :) If she does well in the next day or so, they may start the hour trials of being just on cpap (one pressure when breathing out). We will see, she is still on the rate of 5, but her pressure has lowered from 20/8 to 18/6. She has tolerated it well so far.

Justin and I have been alternating turns today, sitting at her bedside. She has been enjoying us being beside her while awake. We had quite a weekend, starting out kind of bumpy, but is ending better. We were completely overwhelmed at first regarding the surgery and the trach itself, but we are getting used to it. It was just such a shock at first. We are just taking it day by day. The staff is encouraging us to be involved in the care for the trach, which we are trying to do. But hopefully we will not have to go home on it, but you never know. So, thanks to everyone for being so understanding about this weekend. We just needed to have some time to absorb everything, so many new emotions. It was just hard that she had to go through yet another surgery, and especially this, because we were not prepared at all. But we are leaning on each other and just trying to make it through. We will see. So, she is resting now, with Dora on the DVD. Thanks again to everyone for understanding us needing a break. Keep praying for baby girl and thanks for all the love, support, thoughts and prayers. We will keep you posted on her status.

Love, Jenny, Justin and Jenna


  1. Jenny it sounds like things are on the way up for lil Miss Jenna! I am amazed at the strength of both you and Justin. Stay strong and love on your daughter everyday. I Love you guys, especially you lil miss, Uncle Stu

    Need I say more?
    Love to you all,
    The McGraths

  3. My heart is flying right now!! I'll say PRAISE GOD!!! I am so in love with and so proud of you three!!! Jenna and you two are the three most amazing, inspirational people I know. Our little fighter is going to overcome this too and the next few weeks will fly by!!! Everyone's prayers are being answered, God and Jenna are doing the rest. I wish I could see her smile... Grandpa Cliff

  4. It probably seems like a never ending rollarcoaster. We know you had a emotional and stressful weekend, but looking on the bright side it sounds as if the surgery went well and is helping Jenna recover. Our thoughts and prayers continue...I have been keeping Lori and Justin posted because their internet is down...They also are praying for you!

    Love you all,
    Brent, Lisa, Slaton, Justin, Lori, and Tristan

  5. I know all of this has been very difficult for you but I believe that God is guiding the doctors and showing them the best plan for helping Jenna to heal. You're in our prayers always.

  6. This is such an uplifting story. I think Lil' Miss is on the positive road now. You have all gone through so much, but God has held you close. Praise the Lord that things are heading the right direction.
    Jo, Don, and Seth Burns

  7. I have had a permanent trach for over 10 years. If Jenna comes home with hers, maybe it would be interesting to her to see someone else with "their tube". Maye she's too young to make the connection, but if you need me, just let me know.
    Donna Smith

  8. JJJ,
    Whew! I am so glad that things are moving forward even more so, since I left on Monday! Hang in there and I love you!
    Aunt Missy

  9. Hi guys - Still praying and feel better about this news. Lots of people still asking and keeping prayers going. God is good. Jerri Gibson

  10. Hi... Still praing for Jenna and your family...My friend Lesli (One Day at a Time) Blog... told me about your story and I had actually met a family member of yours at Lesli's little girl's B-Day party... Anywho you are in our prayers... And praise god... for everything moving forward...

  11. Hello there, just wanted you to know that my church family is praying for Jenna and your family. God is still in the healing business. Hang in there. Love & Prayers Phyllis Cline

  12. thank god baby jenna is healing