Little Jaden Michael Everett is out of the hospital, much to his mother's delight; however, he continues to battle for his life. (Jaden, two, has Tay-Sach's disease.)
Beatrice Everett here. Sorry for not writing; things have been crazy around our house, especially since Jaden got out of the hospital. (He just got out on Monday, the fifth.)
Jaden is over his respiratory crisis; however, he is very weakened, and he sleeps most of the day. Might as well let him get his rest, but I thought he got plenty while in the hospital. It is troubling, though, to see him not responding when we change his diapers, or try to feed him.
I've talked to our doctor regarding his sluggishness; he says that it is normal for children to regress backwards following a serious illness/hospitalization; we shouldn't be too concerned. Easier said than done; he's not the parent. I am; I know what's going on with Jaden, and I don't like what I see happening!
Jaden is on oxygen now. Small, plastic prongs rest in his nostrils, delivering oxygen to his recovering lungs. Seems funny, but he does seem to be breathing easier since getting on the oxygen. He's on a whole plethora of meds, and he has to have breathing treatments up to three/four times a day, to help keep his lungs clear as possible. In addition, he gets chest pounding therapy three times a day, an hour a pop.
I sit here by his crib, watching him sleep. For the first time since getting out of the hospital, he looks peaceful. He doesn't have to worry about numerous pokes, proddings, interruptions; for this, I am eternally grateful.
It is so nice seeing Jaden look like a normal little boy for once, without the tubes crisscrossing his small body. He looks pretty good for what he's had to go through lately!
Our doctor says it will take time for Jaden to recover from his latest illness; I should learn to be patient, take one day at a time. Any day where he isn't coughing or gasping for breath is indeed a miracle from God!
It shouldn't be too long for Jaden to regain his happy nature; soon he will be laughing again as we tend to him, or cooing when we talk to him. I just hope that he can get through the remainder of the winter months without a relapse of sickness! If he gets sick again to where he chokes, our doctor may have to move up the insertion of the gastrostomy tube sooner; I pray that doesn't happen!
Well, I am going to go. Jaden is waking up; maybe he's hungry or needs changed. I will write in here again soon; until later, take care and may God bless you! Just keep us in your prayers/thoughts; pray for little Jaden as he recovers from his latest setback! We would greatly appreciate it!
SO sad it is touching. The only thing that makes sence to me about kids being so sick that it is the expereince in life God is with us to help us walk through life but God wont stop things from happening cause it is our expreince to live. That is the only thought that comes to me that makes me not upset to see how much children suffer and adults some people suffer way more than others do.
You have a way of writing keep it up you touch so many people.
Hugs Angela
I never understood why the children have to suffer so. I love God, have much faith and will always trust in Him. It's just so, so hard to understand. As adults, sometimes we get what we deserve; but little children are innocent.
Don't delay too long with the G-tube. Doctor's told my mom she was too weak for major surgery for cancer, but if they had inserted the G-tube earlier, her inability to eat, because of the stomach and throat cancer wouldn't have weakened her as quickly, and she may have lasted longer, enough to have the surgery, but know who knows now?. I hate it when the doctor's guess at the problem and poo poo it, and don't trust the caretaker's judgment. Deadly arrogance! You DEMAND tests and action, NOW! Do not lie down and don't accept crap for brains judgment. They don't know your child like you do.
