Plea for Help

We made it! Jack is finally getting to go home after nearly three months, five more days & he would have made the three month mark. I did not know what to expect with all the things that was wrong with Jack, but I knew when our complete faith was in the Lord, Jack would be okay. To recap all of his issues in case you’re new to my blogs:

After 100’s of labs, chest X-rays, consults with nearly every type of doctor, seizures, sleepless nights, blood clots all throughout his body, a vent, a self-extubation, four extubations & intubations, a trach, a GI bleed, taking the trach out, countless bags of blood & plasma, crazy lab work, a collapsed lung, going from complete tube feeds to now all regular food, a tremendous bed sore on his bum, staff medication mistakes causing issues, & stealing the hearts of all the staff, he has made it! The road was hard. It was particularly difficult due to Covid. Lee getting it so severely, I had it but not bad at all but I am still suffering with a the most terrible thing I can think of to smell-cigarettes! It is like living in the 80’s again! All day long I smell cigs as a result of Covid. As a child, I was tormented by cigarette smoke, have always hated it & complained about it (my parents automatically caused me to be a complainer every time they lit up). My Mama & her girlfriends or sisters would sit around the table smoking, drinking coffee & Cold Duck all hours of the night, it kilt me! Daddy would smoke with all the windows rolled up while I lay gasping for fresh air. Now I am plagued with my nemesis! The things we witnessed Jack go through are images we will never forget. The unanswered questions, doctors not knowing what was wrong with Jack on many occasions. doctors saying Jack would be vent dependent for the rest of his life, being torn away from my family, our dog Teddy, the sun, the moon , the stars. For days on end, I never went outside. I started to think rickets was in my future. The terrible food choices, the isolation because I didn’t want anyone coming in giving Jack Covid, the horrific sleep arrangements, the noise of the PICU, transferring to another hospital for rehab, it was all such a blur of time & also a long span of time in the same breath.

Now that Jack has graduated from rehab, he will be returning home. Up until today, he has been very kind & understanding about all that has taken place. Jack missed Christmas which he has always gone nuts over, hasn’t mentioned it once during his stay. He is forgetting a chunk of time. His Santa gifts are setup in his room for when he returns. Today with Mama & me, he has been antsy, sassy & irritable. He got angry with me about his feeding tube. This is what has caused such a delay in Jack’s care & the decline of his health. He got angry when I told him we were going to have to go to back to the main hospital to check his gtube. He demanded for it to come out. If you’ve read any of my blogs, y’all know Jack is difficult, is a picker & can be violent. If he doesn’t keep this tube, he will go through this same type of illness again & again until he can’t. I don’t know how we will make it with the gtube in place other than prayers. Jack is apt to pull it out completely. It is such a helpful tool to have with someone like Jack . If he gets in a non-eating cycle, we can tube feed him, hydrate him, meds go in it also so he doesn’t have to swallow pills any more & we can give the constipation meds in it . It is a win-win, but not in his eyes.

There are going to be more doctors appointments now & y’all know Jack doesn’t willingly go to appointments. As he gets stronger, it is also a worry of Lee’s & myself that he will get angrier over the new stuff & show-out. Now that we have beat one obstacle the size of a football field, we have another giant one to feat. This is one is going to take the same amount of faith & prayers. What sustained me & gave me strength on the countless nights I sat in Jack’s PICU room & cried my eyeballs out, was the prayers from family & friends. I wanted to lay down & die-truly! But I didn’t, nor did Jack. He hasn’t come this far to go back through it again. I’m asking for prayers once again from y’all for Jack to be accepting of his gtube & never be violent again. Thank you each that lifted us up through this whole ordeal, sent gifts, cards, monetary assistance, donating blood, offers to help at the Berry Patch, everything! We need our prayer warriors to continue to help us fight for Jack. Jack is really going to miss the luxuries of room service. There were times he would order five plates, those poor food & nutrition employees. This might be a ploy to get back to room service! You know, Hugh Hefner will do whatever it takes to get his way! 🤣🤣🤣 Thank you all! 💜💜💜

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

3 thoughts on “Plea for Help”

  1. Amy, I will be praying Jack accepts the gtube. That the violence will cease. You have not come this far to let anything stop you now. He will accept this in JESUS NAME!!. I love you all, n pray for you daily. Kaye

    Liked by 1 person

  2. I love your blogs and the way you explain everything! Jack is going to do fine with this gtube, we all just know it because God didn’t bring him this far for him to go through it again! Tell Jack he has a fan club out there and let’s start a group just for Jack to talk to about this that has been following him and let’s show him how much he means to all of us! Let mama accept the friends he can talk to and maybe it will keep him focused on what he has to do to stay well! Maybe after a podcast all about Jack, idk. There’s going to be some kind of group you can make just for people to talk to Jack! Make him believe he is famous by what he has gone through! I think will all the prayers and so much faith, we can all help Jack stay busy with something like this to keep his mind fixed on what he has to do to stay well. It’sa thought!

    Liked by 1 person

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