I have always been real on this blog about Kendi's health. I've been real about the fact that HIV has been an extremely EASY special need to "deal with." I've been real when I've said that the gtube (for taking nasty meds) was a no brainer and so NOT a big deal. I've been real when I said Kendi seemed to have a BETTER immune system than the rest of my kids--not getting sick when they would during the cold winter months! But my gut tells me something is way wrong with my baby girl right now.
At the beginning of December she got a cold. No biggie. Snotty nose, sore throat, headache. She never got *really* sick, but also didn't get over it totally. Snotty nose continued. Then 7-10 days later she came down with some sort of raging virus that had 103-104 temps. That lasted 2-3 days, but she got better. Except for the snotty nose. Weeks of snotty nose, mixed with varying degrees of sore throat and less energy. Some days she'd be almost normal. Other days she'd be sick enough to lay around most of the day. Every week we'd have a few days with temps, but not super high. Then several days ago she came down with another raging virus thing with a highest temp of 104.5. She had temps for 3 days with that one. Now we're over that but she is still left with a horrible runny nose, sore throat, and things are going into her chest for the first time.
Please understand that I'm not some cold-hearted person that never takes her kid to the doctor, but I have been a mom long enough to know that docs can't do anything for a cold. None of Kendi's snot is anything but clear. It's just constant. And it was never in her chest until the last few days. Our regular Ped is changing practices so between November 9th and January 9th we don't have her. [We could take our kids to one of the other docs in a pinch, but those other docs know nothing about our kids' history, which I think is important.] This was all happening during the super busy holidays, and most days was just a snotty nose. So now it's been a month that my baby has been less than herself, not able to get over anything--or getting everything she is exposed to (we don't know which).
Mid December after about 2 weeks of this my mom radar really started going off. Something didn't seem right. Kendi has never gotten sick and stayed sick. She is a super vivacious, super energetic child, and yet over the past month I have watched her energy go down and down. Kendi is also a cryer--she will TELL you her needs with a big 'ol fit! In my heart, I have felt that maybe her HIV meds aren't working like they should be, and maybe the virus is once again multiplying in her body. Our Peds Infectious Disease doc is not a PCP. He makes a big deal about that. You don't take your kids there when they have the sniffles. But by mid-December I felt it was more than sniffles. She needed to be retested and seen BY HIM. Unfortunately, the office closed a week before Christmas week (right when I was calling) and only opened up this morning.
When I finally got ahold of the office this morning I basically said I needed her to be seem today or tomorrow, or was probably going to take her to the emergency room (where the doc would be paged anyway). When I described what has been going on with Kendi the nurse told me the doc would be in at 10am but she felt strongly that when he came in, he would want to admit Kendi--that this absolutely sounded as if her immune system is compromised (therefore HIV numbers high). She told me I should get everybody packed and to make arrangements for my kids, etc.. and she would call me when she knew more. As it happens, she was wrong about the doc coming in today. Tomorrow is his first day. He said that unless she takes a turn for the worse tonight and I need to bring her to the ER, to come in tomorrow at 1pm, where we will assess and possibly admit her to the hospital.
That's where we are. I know that this child is absolutely in God's hands. I have literally felt His healing power run through my body when He healed Samren of autoimmune enteropathy (and I was holding him). I know that the Lord can heal Kendi (of course of this acute illness, but also of HIV itself). I also know that He may choose not to. I am not a "name it and claim it" sort of girl. I think He has many reasons NOT to heal a person sometimes. Just think what a testimony my Type I, mostly blind, 3 years post kidney transplant husband has to our kids with special needs. He has LIVED medical diversity for 30 of his 40 years, so when he tells them to persevere...to fight harder...that he knows what it's like...he really does. The Lord has chosen not to heal my husband, to the benefit of my children.
As I write this Kendi is sleeping on the couch. When she woke up this morning she was just sort of staring into space. She found a corner and sat in it, making herself into a tiny 30 lb ball. No desire to eat. No desire to jump around or laugh, or even to throw a fit when she wasn't getting something she wanted! I spoon fed her about 1/2 a cup of her favorite cereal before she wouldn't take anymore. [This is after her not eating any dinner last night.] This was/is our first day back to school after the holidays so she wanted to do that. She made it about 20 minutes, sneezing and snot-running, and eyes that don't seem to want to stay open because of swelling in her face. I don't know how she made it 20 minutes, but at that point she seemed to be drowning in all of the bodily fluids coming out of her. I asked her if she needed to lay down and maybe do a Leap Frog toy (educational). She did that for about 5 minutes before she fell asleep.
Is thi HIV-related? That remains to be seen. Something in my gut says things aren't right in that area. But we do know that my sweet daughter is failing in some way. Every day, every week, she seems not to bounce back with the same fervor. There is less of her. Please PRAY for healing. PRAY for restoration in her body, down to the cell level. PRAY that my girl gets her bounce back.