Monday, January 25, 2010
Sunday January 24th Miss Jenna Bean turned 6 yrs old. Unfortunately it was NOT a birthday any of us would like to remember. As some of you know, from either reading the previous post or from Facebook, Jenna has been sick for going on three weeks now. On Thursday she was diagnosed with strep, bronchitis and an ear infection. We went home with Omnicef, Bromfed, Mucinex and albuterol to use with a nebulizer. Well okay so that was Thursday. I thought, "No problemo. She'll recover by Sunday for her birthday." That should be enough meds to knock this out of her. Right? RIGHT? Um...no. She got worse and worse every day. By Sunday she was hardly even sitting up anymore. We tried to entice her with birthday gifts. Nope. Didn't even have the strength to sit up for that. That was my last straw in this waiting game. I bundled her up and off we went to the ER. Not busy at all and we were taken in right away. Poor kid knows too much about hospitals. Once they had us in a room she started looking around and she FREAKED out. Ugh. They were thinking maybe pneumonia so they did a chest xray and ran some labs. Again she FREAKED at the mention of labs. She did really good though. I guess they expected a fight because the phlebotomist came in with two nurses. She cried of course but held herself REAL still. The phlebotomist was awesome! Got in nice and smooth. I told Jenna I would put him in my purse so we could keep him with us :P We then waited for what seemed like an eternity. She was in and out of sleep. Me too I think. The ER doc came back in and said her chest xray was clear so no pneumonia. And her labs were about as normal as Jenna can get. So...that's all good news. But...the bad news is she is really sick but there is nothing that can be done but wait it out. Seems she developed a viral respiratory infection on top of everything else. He said a "normal, healthy" kid would likely take at least two weeks, possibly 18 days to recover. Jenna will take even longer because of her immune suppressing medications. Ugh. So we headed back home. She did manage to sit up long enough to open her presents when we got home but that was it. No cake or ice cream for Bean. No birthday dinner. Really no celebration at all. Daddy and I told her she gets a do-over. She likes that idea.
Saturday, January 16, 2010
I really am. I am just so sick of it. Just a warning, a disclaimer perhaps, I really feel like complaining today. Maybe I feel I'm entitled to just one day, one moment of complaining. Probably a lot of this will come across as offensive too. I really do not mean to offend anyone. I just need to purge my feelings.
Parents of "normal", "healthy" kids just don't seem to really get it. When your kid is sick and running a fever, yes it's scary, yes it sucks, yes it's sad. All that and much more. When a child with a medically suppressed immune system gets sick it is down right frightening, frustrating, maddening, stressful, I can't even begin to find all the words I need to express how I am feeling. Jenna, along with SO many kids just like her, is on some heavy duty meds. I really don't even understand them or how they work. One of the meds she is on is a chemotherapy drug. Yup...used to treat cancer. Her dosage of that was recently doubled and switched from oral consumption to a sub cutaneous injection. That scares the He!! out of me.
Since before Christmas she has had this nagging cough. Nothing major. Just a nuisance that wouldn't go away. This past Monday I kept her home from school because the cough had a new friend. A headache. So we went to the peds office. Couldn't find anything obvious. At that point she didn't even have a fever. Even though there was nothing obvious she was put on three days of Zithromax to try to battle whatever was ailing her. That night the fever started. It has been all over the place. As high as 104. As low as 99.2. Is it influenza? Beats me but even if it is I know there is nothing that can be done other than fluids, rest and Motrin. So that's what we have been doing ALL week. She hasn't been to school since Friday January 8th. From Thursday afternoon through Friday late morning she was fever free, headache free. Just still that stupid cough. So, I thought maybe she was coming out of whatever she had. It was SO beautiful here yesterday. I thought some fresh air and sunshine was in order for us. Off to the park we went. How harmful can that be? We were there about 30 minutes and she suddenly looked awful. Completely wiped out. Headache was back as well as a tummy ache. *sigh* I was hoping she was just on the swings to long? No such luck. Got her home, took her temp. Son of a gun it's back. Nothing major. Just been hovering right around 100. But still. It's there. I really don't think she has any kind of major illness going on. It's just that with the meds she's on she can't fight off whatever it is she does have. But stopping the meds means her eyes and joints get worse. We can't win. What am I supposed to do for her?
Well I don't know how cathartic that was but it's out there now.
Tuesday, January 5, 2010
Last Wednesday, December 30th, Jenna went to Duke for her follow up appointments with rheumatology, opthomalogy and labs. Opthamology was up first on the agenda. I didn't have good feelings going into this appointment. She'd been complaining of pain, light sensitivity and "feeling things" in her eyes. She did SUPER good letting them check her pressures. SO proud. Best she has done yet. Pressures are good at 17 each eye. Then Dr. Wallace's fellow came in to take a look. I held my breath and prayed. She said everything looks the same as last time just a trace cell in one eye, other is clear. PHEW! What a relief! I asked her why Jenna would be complaining of pain and photophobia. She said Jenna has a bit of a "dry spot"? Okay. I'll take it. Then Dr. Wallace came in and checked her out. He says, "No, things are not at all the same." WHAT?! He says his fellow is wrong and he goes to get her to take another look. They come back in ad he tells her to make some adjustments to the slit lamp. Then she sees it too. Not a terrible flare, 10 cells in each eye, but considering that just one month before she was quiet. It is indeed bad news. We're trying a different drop since pred forte makes her pressures sky rocket. She is doing Lotemax 4x daily and will see him again in one month. So that was the "bad".
Next up is rheumatology. This always makes me nervous. I don't know really why, just does. So again I hold my breath and pray. The doctor comes in and looks Jenna all over, moves her joints all around. They are VERY thorough and for that I am so thankful. After looking her all over the doctor says her joints all look GREAT! Excellent range of motion and flexibility, just a tiny bit of fluid on her right knee, nothing to be concerned about. YES! Thank you God! What a relief. That is the "good".So then we talk about her meds. They have been wanting to tweak them since her first visit in August but they wanted her eyes clear, then she got sick and now her eyes are flared again. We are all in agreement that we can't keep waiting. AMEN! While her joints seem to be responding well to her current meds (Enbrel and MTX) her eyes obviously aren't. So the question asked of me was, "Do you want to change the dose of the MTX and make it sub cu and wait 3 months to see if that works and keep her on Enbrel? Or, make the switch NOW from Enbrel to Humira along with changing the MTX?" I told them I am all done with waiting. If they are on board with switching everything now then so am I. They agreed. No sense in waiting anymore. Although Humira injections are painful, if they work then we'll cope somehow.
Next up was labs. Jenna HATES labs. I try to remain calm because she isn't. Not easy to do knowing how she reacted last time. Took three of us to hold her down. The worst part is the "noodle" on her arm. She does MUCH better if that isn't used. We had phlebs in Maine that could do a draw without it but here they insist they need it. Thankfully it's been chilly here so Jenna was wearing a long sleeved top. She put the "noodle" over her shirt sleeve ;o) Didn't pull the skin so much. My big, brave girl cried her heart out but she didn't move an inch and she didn't fight. Again, SO proud of her!! More "good"! Poor pumpkin slept nearly the whole two hour drive home. She did so well with everything.
Now we move onto the "ugly". When we got home that night Larry headed out to the Walmart pharmacy with all her new scrips. I seriously do NOT know WHY we keep using them! They tell Larry they can have them all filled, ALL filled in 45 minutes. I tell him to just come home, he can go back in the morning for them. So he goes back in the morning, and comes home with just her eye drops, Methotrexate and syringes. No Humira or lidocaine. They said they are waiting to hear back from the doctors office with a question on dosage. You didn't know this last night?? So I check her account online later that afternoon and I see the Humira has been filled. Larry goes back AGAIN and comes home AGAIN empty handed. Are you kidding me?! They tell him they don't have it. They need to order it. Seriously?? You didn't know this last night? Or this morning? And why is it filled on her account? Who know. Certainly not them. They tell us they'll have it Monday. Only one day past "shot day". Not too bad. So Monday afternoon we go back. The order is in but not sorted. Uh huh...we'll come back. We have nothing else to do really. So Larry goes back a few hours later. He comes through the door...EMPTY HANDED. WHAT NOW?!! Apparently she is no longer covered by Medicaid. Really?? They wanted $2,000 for her scrips. Gee...thanks DSS for notifying us! It's now 4:30. DSS closes at 5. Good luck getting anyone to answer the phone. He managed to connect with two actual human beings. Unfortunately, they couldn't help him. Awesome. So he has been sitting in their waiting room since before 9 this morning waiting to speak to someone to find out what in the heck is going on. We are really hoping someone has made a mistake and she will be reinstated immediately. If not...I have no idea. We have no other options.