Baby Steps

22 Sep

Today marks one week since Jody was given the gift of life; a new pair of healthy lungs, for which we’ve all been praying.  Truthfully it’s hard to believe one week has come and gone.  It has been an intense week with many highs, most notably Jody’s first breath with his new lungs, but the week had it’s fair share of low points as well.  Lately it felt like we were having more low points than high points, as if Jody’s progress had come to a halt. We continued to rejoice in these new lungs and believed things would get better.  Jody has said a few times over this past week, “I didn’t know it was going to be like this.”  “They don’t tell you all of this beforehand.”  That being said, he has no regret in his decision to have the transplant done because he realizes that what he is experiencing right now is temporary, and will get better.  He knows that down the road, when he’s enjoying life again, watching his girls grow up, and free of his sick and diseased lungs, it will be the reward for his current suffering.

In my last post I talked mostly of the swallowing study and Jody’s need for a feeding tube.  Surgery for this is scheduled for today at 3:30 pm.  Since we are in a hospital its doubtful that this will be the actual time of surgery, but keep him in your prayers around that time.

Since that last post it seems Jody’s biggest issues have been finding the balance between pain management and low blood pressure.  The doctors believe his thoracic epidural is likely the culprit for his low blood pressure.  He was weaned off of the continuous IV medication which was helping this since he was doing so well and his pressures were stable (that was when he was still able to get up and walk).  In the three days since that time Jody hasn’t really been able to get out of bed or walked because every time he tries, his blood pressure drops and he nearly passes out.

The epidural Jody had been using up to that point was not a narcotic.  It was strictly a numbing agent.  He was getting a continuous rate of this medication to keep his chest area numb, and he had a trigger button which could be pushed for additional pain relief.  He was also getting IV Tylenol and on occasion IV Dilaudid to help when his pain level jumped (usually because of coughing or movement).  The night before last, the doctor covering the floor decided to restart the Dopamine (the medication to increase his pressure) and trial turning off Jody’s epidural to see if it would help with his blood pressure which was in the 60’s again.  While I believed he needed this medication to help with is BP, I was completely and totally against the decision to turn off the epidural.  I don’t think Jody quite understood the implications of this decision.  Slowly, but surely, as the numbing agent wore off, the pain increased… and increased… and increased!  It got to the point where Jody was quietly moaning, writhing, entire body tense, tears flowing.  Again, it was awful to watch!  Again, all I could do was hold his hand, and acknowledge how beyond horrible he must have felt, even tortured.  Thankfully the nurse he had was great and could see his obvious distress.  After multiple phone calls, and probably a good 20 minutes of this (which I’m sure felt like a lifetime to Jody) that same doctor finally returned the nurses page and ordered stronger IV pain medication.  Honestly I wanted to wring his neck for the unnecessary pain he had just caused my husband.  After an hour without use of his epidural, it was turned back on.  Prior to this episode Jody hadn’t been pushing his button for extra numbing medication too often.  They doctors kept reminding him that it was programmed so he couldn’t get too much and that he could and should push the button more often. Once the epidural was turned back on we had a lot of catching up to do in the area of pain management.  During that time they said Jody pushed his button something like 132 times, desperate for relief (not to worry, he wasn’t dosed with the medication that many times because the machine knew better).  It took awhile for Jody to get comfortable again, but by about 1:30 am he finally fell asleep and I did the same.

In the morning (yesterday) I woke up to the sound of Jody talking to his nurse.  Instantly I could tell his speech was off, that he was slurring his words.  I recognized it, and figured it was medication induced but he seemed fairly comfortable.  Late morning it was decided by a team of physicians, that they would once again turn off Jody’s epidural (again with the intent of improving his blood pressure), only this time they would give him a Dilaudid PCA instead.  This is a continuous dose of narcotic into his IV and another button to push for extra doses of pain relief when he needed them.  In addition, they also gave him some volume expanders to help with his blood pressure.  As the day progressed it seemed like Jody was getting worse.  His skin was cool and clammy and he was incredibly diaphoretic (sweating buckets).  We were changing his pillow cases constantly.  Just to touch his arm my glove was coated in sweat.  He was pale and felt and looked awful.  Whenever Jody had been given this drug before (at a much lower dose) he always asked the nurses to push it really slowly because if given too fast he felt chest tightness and shortness of breath.  The problem with the PCA was that when he pushed the button it dosed rapidly and Jody felt the effects of that.  He preferred not to push his button because of that, however the pain was too unbearable not to push it.  Finally, late afternoon I had watched him suffer enough and asked his nurse to have the doctor come and evaluate him.  I knew something was not right and I suspected it was the Dilaudid PCA which was causing all of this.  Dr. Shah, the surgeon came to see Jody and while it seemed he didn’t necessarily agree with me, decided to switch him back to the Bupivacaine epidural (numbing medication), and take the narcotic PCA away.  Dr. Shah is a very smart man, and he runs a tight ship and an excellent lung transplant program, but I knew something had to change and that Jody could not stay in his current condition.  Honestly I’m thankful that I spoke up, because once Jody got back on the epidural he was able to take a nap, and when he woke up, he looked so much better.  His speech was clear, he was processing his thoughts and carrying on a normal conversation.  The sweating had mostly subsided, and he looked comfortable.  By 5:00 pm he even stood in place for a minute or two without feeling dizzy.  It was the best he looked in the last three days.  Additionally, his blood pressure was fine.

Since that time I learned that there was apparently a disagreement that morning among the doctors about stopping the epidural in the first place.  When the anesthesiologist came to see us in the evening he said he was waiting all day for the phone call to restart the epidural (He knew Jody would need it).  In young people like Jody whose nerves are fully functioning he said a PCA just isn’t effective for pain with a clam shell incision.  That was quite evident (not to mention all the negative effects of the drug mentioned above).

Jody had a decent night of sleep and looked good when he woke up today.  It strikes me as ironic to think that when he came from the ICU into the Cardiovascular Progressive Care Unit (CVPCU) he was on the Dopamine for his blood pressure and had the epidural and was doing well and making great progress.  He was weaned very fast from the Dopamine and they changed his pain management as I described and things went down hill fast.  He has come full circle and is now back on both the Dopamine and the epidural, just like when he arrived on the unit, and he is finally looking well.  He’s taking baby steps now in his recovery but even though they are small they are moving him forward, and we thank The Lord for that.  I know that they don’t want to keep him on the Dopamine for too long and it’s a scary thought to think of having to go through what we just went through so we ask that you would join us in praying that Jody would be able to hold his blood pressure when they do wean him, especially while on the epidural which he needs for pain relief.

A final positive report, Jody just got out of bed and walked about 250 feet!  Considering he could barely pivot from bed to chair over the last three days this was wonderful to see. I’m hoping this slow progress continues.

Lots of people have been asking about visits.  Because Jody is on large doses of drugs to suppress his immune system, we are limiting the number of visitors in to see him.  This past week he hasn’t really been up for visits period just because of how lousy he has been feeling.  His days are pretty busy and we also want to make sure he is getting the rest he needs.  If this changes, we will let you know.  Feel free to send him emails, texts, and phone calls and he will respond as he is able.  He is encouraged by all your kind words, cheering him on, and helping him through this journey to new life.

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11 Responses to “Baby Steps”

  1. Rich Ragan September 22, 2014 at 1:45 pm #

    Tiff please tell Jody I am the rest of the Steady men Of God Love you bother VERY much and we are praying for him and You! This is what I sent to all of our group and other a few minutes ago.

    My Brothers,

    I know full well that we all get so many, too many, emails to read but I just had to send this to you (Tiffany’s Blog) and I promise it will be worth your time to read because it’s from JODY’S WIFE TIFFANY with an update from her blog on Jody’s progress SCROLL DOWN AND SEE HIS PICTURE AT THE END. Read it and lets ALL keep praying as I know God is listening AND RESPONDING TO SO MANY PRAYERS FOR THE Snellbaker family.

    But before you read it, I could not help copying you on Steve Sabol’s Thought for The Day From last Friday September 19.

    We are all a “Band of Brothers”! Let’s get out of our comfort zone for Jesus Christ and Jody Snellbaker!!

    “Years ago I taught a lesson to my staff titled, ‘Comfort Zone or End Zone.’ At Knights of the 21st Century, we strive to encourage men to leave their comfort zones for the new manhood awaiting them. However, all the concepts about stepping out of your comfort zone mean nothing until you first decide that your purpose, vision and goals are more important than your self-imposed limitations. May the loftiness of your calling lift you out of your comfort zone and catapult you into your end zone today!”
    Steve Sabol
    Knights of the 21st Century

    Rich Isaiah 61:1
    “There are no shortcuts to greatness.”
    Romans 12:1-2; Rom 10:17;. Hebrews 12:1-2

  2. LaRae September 22, 2014 at 2:10 pm #

    My heart breaks for all of the pain he is having to endure. Thanking God for your care giving and advocacy that you give to Jody. Thankful things are starting to look better. Praying it continues and that each day is an improvement. Love & hugs

  3. Jamie September 22, 2014 at 2:29 pm #

    Baby steps or not, I am SO glad to hear that the pain and blood pressure issues have been resolved for now. I imagine you can both breathe a little easier. I’m praying that when the time comes to make changes to pain/blood pressure meds that the transition is seamless, without any of the experiments and pain that ensured this time around!

  4. Xander Forney September 22, 2014 at 2:38 pm #

    I hope you feel better. Get better soon. I’m happy that you got your new lungs. I love you. Love Xander

  5. Marian Ressel September 22, 2014 at 2:55 pm #

    I can’t imagine how hard this week has been for you two..Tiffany, I am so glad that you are with Jody. You are a fantastic advocate for him. On another note, I was a little overwhelmed when I saw his IV pumps. So many tubes! Scary.

  6. Megan September 22, 2014 at 3:55 pm #

    WOW!!! Every time I read a new post I am amazed for so many different reasons! God is SO GOOD!! The awesome team that you two are together is the perfect picture of Gods love for us!
    Tiffany, you are doing such a fabulous job of being Jody’s wife, his helpmate. A balanced support for Jody and knowing him better than any nurse or doctor! I couldn’t help but weep at your last post when you wrote about “of all the things he could’ve said, he said, ‘I love you’.” The comfort and protection that he must of felt knowing that you were right there by his side every step of the way, being his voice and his advocate when he couldn’t.

    And Jody, what an example of strength, determination, and perseverance you are! You are in it to WIN it!!! Keep your eyes on the prize! You are COURAGEOUS!! the definition of courageous is: adj; NOT DETERRED by danger or PAIN!
    I feel blessed to be able to be praying for your family and your journey.
    Thank you for keeping us updated!

  7. Anne September 22, 2014 at 5:57 pm #

    Thank God for the better news. We are continuing to pray for you. Hugs!

  8. Linda Hess September 22, 2014 at 6:13 pm #

    Tiffany,
    Just returned over the weekend from vacation and heard the wonderful news about Jody. I am so happy for your family as I know this was a day you have been praying for. I read over your daily posts from the beginning and they are quite impressive. Tiffany, you have been an inspiration to Jody and the two of you appear to be an awesome team. I’m sure this entire process has been quite hard on you but please know that I am praying for you, Jody and your girls and this journey that you may all be together as a family again with Jody’s healthy new lungs! Please keep the updates coming.

  9. klesh99 September 23, 2014 at 12:35 am #

    I’m proud of you, Tiffany, for being such a good advocate for Jody. And Jody, here you go being a hero to all of us… one day at a time… you can do this!!! So sorry about the extreme pain and the difficult last few days. But kudos to you for standing up today and trying it again. You got this. You two are dynamite and you have the best ever Great Physician with you in the palm of his hand. Love to you from the Gaschos.

  10. Gala Marshall September 23, 2014 at 9:25 am #

    Tiffany, I’m praying for and Jody every single day and I fall asleep at night praying for some rest for both of you. Your story is such an inspiration to all of us. Jody is going to have quite the testimony when he is well and able to tell all of us from his own mouth with his own breath how wonderful and mighty our God is. I’m giving all praise and glory to God for Jody’s complete healing and that’s what I picture in my head while I’m praying. I love you my dear friend and I’m praying for you as well. Call me if you need me, night or day I will answer your call. Thank you Jesus for touching their lives!!

  11. Jamie Hess September 24, 2014 at 4:02 pm #

    I will say extra prayers for Jody today as he has his feeding tube placed. Tiff, you are an amazing advocate for him! Thinking of you all and hope Jody’s recovery continues to progress in a positive direction!

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