Tuesday, September 27, 2011

From then until now ...

Johnny, After you moved back home, it took a while to get into a routine. Maybe it was because you didn't have therapists coming to the house or maybe because it was summer. Slowly a routine started to emerge based around doctor appointments, ortho for Jackie and various other activities. After you were home a couple of months, mom got with your medical doctor and went over your medication list. Together they were able to eliminate several meds. On may 25th, Jackie turned 14!!! Johnny, she has changed so much. She's turning into a lady right before our eyes! In July you started outpatient speech therapy. You failed the dysphasia gram again because you don't like the taste of the barium and refused to swallow it! You'd think that they, the therapists, could come up with something else to test with. It's crazy for them to think that something is right for everyone! It's definitely not one size fits all with you Johnny! Well, mom couldn't see the therapist was doing anything for you that she couldn't do at home so you stopped going. We felt like the therapist was wasting what little outpatient benefits you had! Well, you pulled your trach out again! It took mom a while but she got it back in, wishing she had three hands! You thought it was funny and laughed at her for next hour! A few weeks later your lung doctor told mom to pull out the trach, he said you didn't need it! As I type this update, you are in the process of settling into your new live in rehab. I don't know for how long you'll be there or what the outcome will be. My prayer is that you can walk out of that place and come back home. Nothing is too big for God! Love you Johnny!! Xo Jen

Wednesday, April 27, 2011

Guess who's home...


Well it's been a long journey but you made it back home! Welcome home little brother!! You were so happy to be in your own bed today. It was good to see you happy. Mom made your room as homey as she could. She hung pictures of Jackie and the quilt granny made you. Your hockey sticks are there too. You seemed really tired after mom got you into bed and all hooked up to your oxygen and trach stuff. You were asleep by 8:00 pm. I have to tell you something funny that happened while you were sleeping ... Mickey brought home some Chinese food and after we had eaten and were cleaning up, Mickey said, " my fortune cookie tasted funny and then I realized I ate my fortune". I was in mid gulp when he said that and I spit my water all over mom's kitchen floor! I can only imagine what you would have said to him ... Ha! It's such a blessing to have you home Johnny!

For Johnny's friends that might not know, our mom has moved to midlothian. That's where you can visit Johnny. If you'd like to visit, I'd encourage you to call first and make sure johnny's not at a doctor's appointment. We would really love for Johnny to have visitors, come and stay a few minutes or all day. If you can't visit, feel free to write Johnny an email, snail mail, or post a comment on the blog. I'll be creating a Facebook page for Johnny soon and when I do, I'll post it on the blog so if you'd like to friend him, you can.

Johnny's new address: 740 High Point - Midlothian, Tx 76065
Nancy's cell: 972-345-0454
Jennifer's cell: 972-921-4335
Jennifer's email ... You can send Johnny an email here if you'd like to: jensmith769@yahoo.com

Thank you for continuing to pray for Johnny! We appreciate each and every one!!

Xo. Jen

Tuesday, March 22, 2011


You are doing so good! You got your trach in and that went well! The doctor suctioned your lungs and got a lot of stuff out that you couldn't cough up. Right now you are being given oxygen through your trach until you are strong enough to breath completely on your own. Last time I saw you I walked into your room and said hi Johnny! You stuck your tongue out at me. Jackie was with me and we both laughed out loud and you smiled. We had a great visit! Thank you everyone for praying for Johnny, we appreciate every single one!

Love you! XO Jen

Wednesday, March 9, 2011

Please pray for Johnny, he is having surgery in the morning to have the trach put in. Pray for a speedy recovery. Pray that the Lord guides the doctors hands. Pray for a good nights sleep tonight for both Johnny and his surgeon. Thank you for your dedication and prayer! Jen

Monday, March 7, 2011


Mom confronted the case manager and told her everything that we've been dealing with concerning the nurses and techs. She also told her that she wanted you out of that place as soon as possible. It's the families belief that if Diana hadn't been there last night you would have died. It was and is that serious! Mom has a call into the dr that will be putting in the trachea to see about getting you admitted asap. We don't feel like it will be a problem. Keep praying, johnny's not out of the woods yet. Thanks! Jen

Sunday, March 6, 2011

We are in need of prayers!!

Johnny is not doing good at all! Mickey and I took Ty to see his uncle Johnny today and when we got there we were told that it wasn't a good idea having the baby there so Mickey waited while I visited and then we left. Johnny was sleeping and usually I can wake him up just by saying his name but today that didn't work. I shook him, patted his chest, raised his eye lids ... Nothing worked. I asked the nurse if he had been given anything for sleep and she said yes that he was given something for pain. I didnt think anything about it ... I said my goodbyes and left. Dad and Diana visited after we had left and Diana has medical experience, she noticed his co2 level was real high ... This means that he's not breathing deep enough to remove the carbon dioxide again. The scary thing is that Diana had to tell the nurse that she needed to check that. The doctor was called and he ordered Johnny to be put back on the ventilator. They suctioned a lot of yellowish junk from his throat. He's too weak to cough it out himself. We fear the pneumonia could be back. It looks like Johnny getting a trachea is not a matter of if but a matter of when. I saw Johnny today ... He looked worse than I've seen him in a while. I really feel like if Diana hadn't shown up when she did and took charge, Johnny would not make it through the night. He really needs your prayers. Giving a patient who just came off a ventilator and is working on increasing oxygen level a sedative or any type of drug that relaxes is not good. He was so relaxed that he wasn't producing enough oxygen to be woken up when I shook him. He could have eventually just stopped breathing. Pray that Johnny can find the strength to fight. Pray that he overcomes this round of illness. Pray for wisdom for the doctors and nurses who are taking care of my brother. Pray for peace in the decisions that my parents have to make regarding my brothers care. Pray for Jackie, it's so hard for her to see her daddy this way and watch him on the roller coaster he's been on for nearly two years now. Pray that God's will be done ... It's hard to even attempt to understand! I miss my brother! Thank you for being so dedicated to Johnny. Jen

Wednesday, March 2, 2011

One giant leap forward!!


I feel like we're all playing the game of Johnny and you're making up the rules as we go along!

You did excellent on your blood gas test last night and this morning and as I type this you are having the ventilator tube removed from your throat. You will have the little tube thing that goes in your nose but it will not go into your nose, just rest there. I'm sure you will be more comfortable soon! Next hurdle is to decide where to send you for therapy ... Once your able to leave the hospital. I'm not sure if I posted this but your pneumonia is better and your off the antibiotics.

Praise God for answered prayers and thank you to all Johnny's prayer angels for praying so faithfully!

Love you! XO Jen

Tuesday, March 1, 2011

One step forward ... Two steps back!!


Last week you were transferred from the hospitals ICU to a LTAC (long term acute care facility). The week felt pretty grim! You still had/have the tube in your throat helping you breath. On Sunday we were told that you've been on the ventilator too long and that it's starting to damage the inside of your throat and mouth. The doctor said that the best thing for you is to have the trach put back in. This is something we absolutely did not want! Our fear being that if you have one again you won't be able to have it removed. Mom was told that we were given false information before and that it is possible to be weaned of the trach again. He also told her that it would be worse for Johnny having the ventilator any longer because of the tissue breakdown. So, you've been scheduled for a trach on Thursday.

Resent update: you were given a blood gas test today ... and you PASSED!!! A blood gas test is a test to see if the ventilator can be removed. Removing the ventilator means you will have to be able to breathe deep enough to remove the carbon dioxide from your lungs. This is really good news! If your able to breathe without the ventilator, you won't need the trach!! So, the doctor asked mom if she wanted to have the ventilator tube removed and mom said that she wanted another blood gas done first. You see, if you have the tube removed and then start breathing poorly, you'll have to have the tube again and then the trach ... Steps back! It's better to be safe and know for sure. So, you have time to study for your next test ... Ha! I know you'll do good because God answers prayers! Which leads me to my next subject ... God's will ... I've been having some trouble with knowing what exactly to pray for when I pray for you. I talked to a good friend about this and she told me that God already knows what we are wanting to pray about, even we don't . She left me a note in my mailbox this morning and I'd like to share it with you and those out there that are having some of the same troubles as me.

Romans 8:26
And the holy spirit helps us in our weakness. For example, we don't know what God wants us to pray for but the holy spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the spirit is saying, for the spirit pleads for us believers in harmony with God's own will.

Our pastor said on Sunday:
The spirit of God searches every inch of our lives - He intercedes in prayer for us. He knows stuff about us that we don't even know!

There is comfort in knowing that when I can't find the words to express what I want or need, it's okay because God already knows!

Praying for you! Looking forward to some excellent test scores! XO Jen

Friday, February 18, 2011


You are hurting your momma's heart! Mom called me today very upset ... You have been admitted to ICU again and they intubated you again. You've also been given sedation to help you tolerate the tubes. Your oxygen level is low and again you are not exhaling enough to release the carbon dioxide. Because of your lengthy stay in the hospital, you will more than likely not return to your rehab home. We are looking into having you moved to an acute care hospital, one that you'll have access to a pulmonary doctor. You are being given two different antibiotics to fight the pneumonia. Your family is very worried about you Johnny, you are one sick man! Praying for you to get better! Love you so much! Xo. Jen

P.s. I remembered something the doctor told mom ... I thought it was encouraging ... He told her this is just a bump in the road.

One more thing ... I saw a quote on anneliese's Facebook page that I thought was really funny. It made me think of you and your johnnyisms. It said: don't argue with an idiot, they will only bring you down to their level and beat you with experience. Ha!

Love you!

Tuesday, February 15, 2011

No X-Ray needed for the feeding tube, they were able to unblock the tube by sticking a wire in the tube. You are still in the ICU because a room isn't available still. Hopefully you can go from ICU back to rehab. Again, progress. Love you! Jen

You were scheduled to move from ICU into a regular room today but there isn't one available so you are still in ICU while we wait for one. Right now the problem seems to be in your peg tube ... Your feeding tube. It seems to be clogged and the nurses are having no luck flushing it out. You are going to have an X-Ray today to see what the problem is and they may decide to replace it with a new one. You had that done not too long ago and it's a simple procedure. The doctor switched your antibiotic to a different one that can be given to you in pill form. This means that the nurses dilute it in water and give it to you through your feeding tube. I'm guessing you still have the central line in your arm since they aren't able to give you your meds through your feeding tube right now. All in all, I'd consider this progress! Love you little brother and I'm praying for you!

XO Jen

Monday, February 14, 2011

Another update

Johnny finally got the tube out of his throat on Saturday. Dad said he was coughing a lot ... That's good, clear those lungs!! Johnny still has the central line in his arm ... This is for medication. He will probably be discharged on Tuesday. The newest problem is that he has to be approved by insurance to go back. Cross fingers that he's approved!

Thanks for the prayers, Johnny and his family appreciate them! Jen

Thursday, February 10, 2011

Update on Johnny's hospital visit...

Well, I'd like to say that everything is improved with johnny but the truth is, there's been no change. He's still in ICU and he is still intubated. The nurses did turn down the oxygen where he would be breathing his own but after 6 hours of that, they turned the oxygen back up. Johnny's sedation wore off and he was aware of the tubes in his mouth and nose and tolerated it for a while but the nurses started giving him that a little bit more too because he became agitated. He's had a few more CT scans ... One as recent as this morning but we've not been given the results yet. Please continue to pray for Johnny! Thanks! Jen

Tuesday, February 8, 2011

Prayer request for Johnny

Johnny was taken to the emergency room last night around midnight. He had an elevated blood pressure and a low oxygen level. Johnny was given a CT of his chest and it showed he has pneumonia in both lungs. Johnny has been intubated with a tube that goes into his lungs and inserts oxygen. Because he has pneumonia in both lungs, he's not breathing in deep enough and exhaling enough to remove the carbon dioxide from his lungs. The doctor said that Johnny is breathing on his own but the extra oxygen is helping. Johnny has also been sedated so he can rest more comfortably and to help with the gag reflex. There is also a tube in Johnny's nose to drain the blood off his stomach ... produced by the intubation. The doctor plans to ween Johnny off the oxygen sometime tomorrow. Please pray that this happens. It took so long to have his trach removed and our fear is that if he has another one, the build up of scar tissue will make it's removal difficult and possibly not possible. As I type this, I'm sitting in his ICU room waiting while they take him for another CT scan. It is really hard to see him hooked up to all the blue tubes again. It takes me back to parkland when he was in a coma fighting for his life. The other patients in this ICU unit are gray haired and have similar tubes and things ... Beeping machines and worried family members. I can't help but think how unfair it is that Johnny's got so much color left in his hair ... meaning he's too young for this! I also hate how familiar I've become with hospitals. I want to scream enough! Johnny's back from his CT scan ... I asked if he smiled for his picture ... they said he did ... you have to keep a sense of humor! The nurse got Johnny all situated and turned in his bed. They rotate to prevent skin breakdown and bedsores. Any movement like that can cause his tube to irritate and makes him cough. Watching you cough Johnny was just like before ... No sound but violent shaking. All I could do was stand and cry for you. My heart aches for this to be over for you! It's all just too much and unfair and hard to watch! I love you Johnny and would love to take this pain away for you! Best I can do Is pray and I'm doing that!

Love you!! XO Jen

Thursday, January 20, 2011

January 21, 2011

Your smiling while you tickle Ty ... I love this picture : )
I asked you what you call me and you typed this.

Showing your therapist how you work with magnetic letters. She was impressed!
This is a retired therapy dog. We saw him at the Mckinney Christmas on the square. You're petting him. I think the dog is telling you to get that stupid hat off him.

You were listening to some very loud music and enjoying every minute of it.

The picture doesn't show it but you were tapping your thumb to the beat.

Reindeers. Pretty cool!

You're making a donation to the Salvation Army.

Jackie pretending to let you go ... mom said your brakes were on ... what do you think?

The animals on your residence.

Resting in the shade.

Jackie ... hmmm, I don't know ... being Jackie : )

Christmas morning ... Jackie's asleep in your bed.

Newest member of the family ... Danny. Izzy is saying hello.

Saturday, January 8, 2011

January 8, 2011


Can you believe it? It's 2011!! Happy new year! I'm so looking forward to an amazing year, good things are going to happen!

I'd like to say that Christmas was uneventful for you but we both know that's not the case. You spent Christmas eve in the emergency room...you were sweating profusely but not running a temperature and you were groaning. The doctors had a ct scan done and found pnemonia in the lower part of one of your lungs. You were able to go back to your residence with some heavy duty antibiotics. Mom and Jackie spent the day with you, I spent the day at home with a sick baby waiting by the phone and dad and Diana did too. The weather was so terrible Christmas eve! Mom and Jackie spent the night in the apartment provided for family and Santa visited Jackie there. Then Christmas morning, mom and Jackie spent the morning with you and then dad and Diana spent the afternoon with you. You were not very pleasant company, you were feeling pretty terrible!!

Your nephew is growing up so fast! He turned 6 months right after Christmas and rang in the new year by crawling! It was so exciting! He is trying to pull up on everything and keeps a permanent red mark on his forehead where he face plants about a 100 times a day! I'm assuming you figured out by now which nephew I'm talking about...19 years with just one child, I'm used to talking about a single child ... Ha!

Cody is doing really good. We got him enrolled in another full load this semester. He looks and acts so much like you. I call him Johnny all the time. I guess that's a sign of old age ... Mom calls me Jackie and Jackie Jennifer all the time. Jackie and I have gotten to where we just answer her ... Whatever she calls us.

The other day I was on way to see you and I was driving through Dallas. I saw some homeless people on the side of the road with signs asking for money. It made me mad. I thought if my brother was able he would be out there working his butt off for everything he's got, wants or needs. I thought he would never be asking for hand outs. Well, then I was quickly ashamed of myself for judging ... Everyone has a story to tell and I'm certainly not the person to be judging. I just want my brother back and those low moments hit at the craziest times. When I finally got to your place, it was so wonderful to see you. You were clean shaven and your hair was soft like you just had it washed. You smelled good and seemed like you felt good. At one point you got cramps in you leg and you stiffened up ... You started saying my name over and over. It sounded like enifer, enifer, enifer.... I was in a panic and overjoyed all at the same time. I was rubbing your legs like crazy and beaming because you were saying my name. When you went to physical therapy, you were in a really good mood. Christy had two techs working on a leg each. She said she would be right back, she had to go to the ladies room. I leaned over and said, Johnny, when christy comes back ask her ... No. One or no. Two. You laughed out loud. The techs asked if we were making fun of them. And we both laughed again. When christy came back you were saying something to her but she couldn't understand you ... We know what you wanted to know, don't we! Ha!

I have a good friend who's dad is sick and was put in the hospital. The doctors said that he would need a stent put in his pancreas. They have him on antibiotics. They were giving the pancreas time to simmer down before they did the procedure. She told me that the day they were going to do the surgery for the stent the doctors said that he didn't need it. Praise god! That's what I told her! She said exactly. She said why is it that we pray to god for something to happen and when it does we question it. Are the doctors sure ... Did they miss something ... How can that be, that he would need it and now he doesn't. God answers prayers people! We shouldn't be surprised whe we pray to him and he hears us. Instead of being surprised, we need to expect his miracles and thank him and praise him for our answered prayers! After all, he is the master physician! The maker of all things! He has a plan! So, instead of being surprised, I'm saying ... My turn ... I'm ready for my miracle Lord ... Work your miracles on my brother Lord ... Let Johnny be a testimony to your miraculous works! Heal him as only you can Lord, I know you can, I want you to, I expect you to, I know you will. You have an awesome plan for Johnny Lord and we are ready! Shine your light on my brother Lord!

Johnny, you are on my mind constantly. I pray for you all the time. I have faith and I trust that the Lord will pull our family up out of this pit. Hang in there little brother, your miracle is coming! Love you so much and I won't stop believing in you!

Xo! Jen