From the outside looking in...it almost looks like I invent stuff to stress about. Trust me though....I don't. I will admit that at this point my anxiety levels have periods of being off the chart but then David smiles or laughs or "yee haws" and I remember that we WILL get through this.
Last night though....I started getting more concerned about his skin break down. I have duo-derm patches anywhere his skin is starting to look raw, but I keep feeling as if there is something I should be doing to prevent it. Again....no real instruction upon leaving the hospital. The instruction I was given was for when his legs and feet were swollen. That is no longer the case. I did put a facebook call out for suggestions. I got some great ones.....the best of which was "use the emerging bed sores as a way to spur on home health care coverage." I am on it! Then as I was getting David ready for bed last night....I noticed something in his lower regions that concerned me. One of his testicles does not look right. I can't imagine that the surgery would effect that in anyway....but one just isn't right.
When David was born and in the NICU....he had a testicular hernia. They did surgery and put in (as I recall) a mesh "ball"! At the time it was no big deal and way down low on the things that I was concerned about with his health. It has kind of gone to the back burner in my thoughts over the years. My question now is....is this just the result of the old surgery or is there something new and concerning going on? I have no intention of waiting and worrying further about something that may or may not be worth worrying about. So because of all this......David is taking his first outing today to the pediatrician. I think we are ready for this and with this trip we will kill two birds with one stone as I will have the doctor look at his sores. It will be a win win for us all. Hopefully this is nothing and it will once again be stored in the recesses of my mind....seldom if ever thought of again.
You see what I mean??? I am still waiting for that other shoe to drop. Outside my neuroticness (making up words again) David seems to be much better today. The only REAL issue I am having with him aside from the bed sores and the pain......is that he keeps sitting up straight in bed and then bending forward. While I am more than impressed at his stunning flexibility....I know that the reasons behind this behavior probably have much to do with his comfort. He still hates being on his stomach and fights me every second....but I think his bending forward is possibly a stretch that makes him feel better. Once in a upright position it is visibly obvious that lowering himself back down into a lying position is painful. He will do it, but he does it slowly and cautiously and if forced in the slightest will scream in pain. Last night during the night I had to get onto him numerous times for sitting up and trying to sleep lying forward....partly because it hurt me to see him sleep like that and partly because I can't imagine that it is good for his back. Maybe Dr. P can give me some guidance today....God knows I need every pearl of wisdom possible.
Aside from worrying some....I am feeling better. Yesterday I had my first volunteer come by. Wendy is a lady who is one of Z best friends mom. She stood watch on David and did a few little odd jobs while I took two misbehaving dogs to the vet and ran a few essential errands. It was wonderful to be able to mark some things off my "to do" list and also to get out of the house for a bit. I hope Wendy knows how much I appreciated her being here. It is such an "out of my box" type thing to have people come into my house and "help" me (Berty and Thiry don't count). I just know that after this experience.....I will be spending the rest of my life giving back. You have no idea how humbling this all can be and eye opening. Sometimes you have to throw upbringing and pride aside and just allow others to step in and help. Despite how much I wanted to believe differently....I simply can't do it all and that which I can't do will drive me insane until it gets done. Having help means I can keep my sanity and survive the sleepless nights and the days when pain rules David's day. It also insures that I have the time to do basic PT with David, give him baths, make sure he gets tummy time in and does his transfers to the wheelchair. Believe it or not...those all take a huge chunk from the day. So I admit it....help is necessary and I am truly grateful. I guess you could say that I am getting a major lesson in gratitude!
And speaking of grateful....as I was typing this....my phone rang. It was someone ordering cheesecakes. They had just heard about "Cheesecakes for David" on local radio station KEYN. While talking to this individual my call waiting went off. And then it went off again! Apparently the minute they heard about David they started calling to order. I am speechless. I have no idea who put this in motion but you can't imagine how grateful I am. I was wondering if after our hiatus if anyone would be interested in ordering again. Thank you whoever did this and thank you KEYN for telling the area about David and our cheesecakes!
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