It’s been a long six weeks since our Audrey girl came home from the hospital. We’ve had some rough days, we’ve had good days, we see improvements and things that still just don’t seem right. We’ve spent a lot of time at home, not going places, not having people around, doing our very best to avoid any additional illness for our Rosebud, to give her little body a fighting chance. All the while, waiting for the last two days, of doctors appointments to give us answers.
Yesterday Audrey and I loaded into the van and headed for Surrey, off to see a pediatric urologist who specializes in kidney issues. The drive was good (I didn’t get lost! On the way there, we’re not discussing the way out), we waited a long time in his office – these guys are few and far between which means there are a lot of kids who need to see them. Audrey was gold, she sat and talked with me, visited with another little girl and was patient. I wish I could say the same for a few of the other parents -we’ll all get seen , yes it sucks to wait but just be glad you’re only waiting an hour to see a doctor rather than 6 months on a wait list.
Here’s what he had to say:
– Audrey’s latest ultrasound in the hospital shows both kidneys measuring the same!!! This is a huge improvement because the one previous had showed her right kidney enlarged and showing scarring. If he’d only ever seen the most recent ultrasound he said he’d never have know she’d been sick. Praise the Lord.
– From all the other tests she has had, he can’t see any cause for the infections, we know that Corey and I are doing everything in our power to prevent them and that’s apparent. So, his best guess is that they are caused by a few things, one being the fact that she holds her pee for a crazy length of time, she has done since she was a teeny baby. The longer the pee is in the larger the risk for infection. The other being some kids are just very susceptible to these infections while they are in diapers/pull-ups and the hope is that once she’s potty trained these will go away. We’re doing our very best to complete that process (which if you’ve ever helped a child potty train you know can only be done on their schedule). Until then she’s on a new medication to help prevent an infection from occurring or taking root, that means at least 6 months of medication, this one a little less powerful than the last. We will have to be a few months past being trained before we’ll be able to stop these meds. Which in our eyes is a much better option than facing the consequence of another infection.
– He also said that he thinks the reason Audrey’s been losing so much hair (the kid’s thinning on top a little) is because when you are really sick, your body only produces 1/3 of your hair. It’s so busy putting all it’s resources into helping your body heal and that means stopping hair production. Then once you begin to get well, the 1/3 that was growing takes a break and falls out. That was his best guess, our pediatrician said she’d be watching it.
– As far as this doctor is concerned we don’t need to see him again!!! Unless something else happens another UTI or Kidney infection he feels we’re on the right track and our girl should be clear of this soon!
That was so great to hear! We’ve been worried so much about the consequence to her kidneys and the ramifications to the rest of her life – God really answered our prayers for healing and well being!
Then today it was off to Dr. H our fantastic pediatrician. She has been wonderful and Audrey loves her, which for a shy little girl is saying something. Her news was both good and a little open ended, here’s what she had to say
– First off, she noticed right away that Audrey’s color has improved wonderfully since she last saw her! We knew that but hearing it is always so nice.
– Audrey has lost some weight since coming home from the hospital, in spite of her excellent eating habits (baby girl can eat!). She’s still doing fine on the curve and as long as she gains back a pound and half over the next 6 months we’re not going to worry about it
– Dr. H wants to keep an eye on the fact that Audrey has some different red marking on her scalp and her hair falling out. It’s not, I repeat NOT coming out in clumps so the Urologist guy could be right, we’ll just see. Not worried, just not writing it off
– She agreed with the medicine change, as long as Audrey’s body tolerates it well then it will be our choice for the next 6 months.
– The fact that Audrey still gets dips and spells where she’ll get intensely pale or really tired, is due to how sick she was. She believes as do we that Audrey is getting better, but she sent us for a huge panel of blood work**. Those results should hopefully be back tomorrow, so I’ll have some numbers to go on. We trust God and know He’s in control and unless we hear otherwise we believe He’s working in our girl.
– We have an outstanding order for a urology test. That means any weird symptoms or any fever at all and there’s pee in a cup on its way to a lucky lady at the lab. Dr. H doesn’t want to take any chances, and we’re so glad.
– Here’s where the news wasn’t what I wanted to hear. I asked her about what would happen if Audrey got sick, with anything right now. Dr. H’s answer? She’ll drop way down to where she was with her anemia again or worse. Audrey was very sick, and her body really struggled with that, so it’s going to take time to recover from that. She didn’t have a time frame for how long that will go on for, but for now she’s still cautioning us to be careful. Sigh
Don’t get me wrong, I’m so happy with the majority of what we heard the past two days! We didn’t hear that our little girl was facing a lifetime of pain, we didn’t hear that they wanted to put her back in the hospital and she’s not leaving us anytime soon. Those are things to rejoice about!!! But we wanted to hear that she’s out of the woods, we wanted to hear that we can resume life as normal and not be afraid of the consequence of an illness. I didn’t want to hear that.
She wasn’t saying that we can’t go out anywhere, or that we can’t visit or have people around. But we do have to weigh out the consequence, we do have to be very careful and until we get the numbers back on her hemoglobin and retics (baby red blood cells) we won’t know how seriously we have to take that.
So, tonight we’re rejoicing and we’re praying! God is good, our girl is on the mend and that is something to be happy about. We are just praying that her numbers come back good and improved, that each day will get better and that she (and her super wonderful and strong big sister) don’t get sick. I don’t think anybody could face that.
Thank you all for your love and support! We could still really use your prayer, this journey isn’t finished for us yet and knowing you all are behind us makes it a much easier road to be on. Once the numbers come in, I’ll let you know, and as time rolls on we can’t wait for life to resume to normal.
** Audrey and I headed straight for the blood lab today after her appointment to get the “pokes” over with. This way the results should be back tomorrow and we would know something before the long weekend hit. This lab is directly across the street from two pediatricians offices, and is in a building with other medical professional. We hardly waited, Audrey sat there nervous but being good as gold. As we sat down the lady informed us (very apologetic because it wasn’t in her control) that not only did they not have any butterfly needles, they didn’t have any children’s sized gauge or small adult gauge. All they had were large, adult gauged needles and that was what they were going to use. This is a size they don’t even use on my usually because I have
totally destroyed and crappy delicate veins. My stomach bottomed out.
The technician drawing the blood kept apologizing to my only whimpering little girl as she attempted to fill the vials off the first poke, the other tech (who obviously was “in charge”) told her to stop, she felt bad enough about not having a smaller size without her colleague making her feel bad. I considered kicking her in the shins.
Then they hit a road block and collapsed the vein, before they filled the final vial. The wiggled the needle around and nothing, except silent tears from my sweet girl. Then they announced they had to do it again on the other side. This time Audrey cried and they warned me that it didn’t “go too well and she’ll be bruised here”, Audrey was an angel and held still the whole time. It ended, the tech apologized one more time and stocked Audrey up with stickers. It was a gong show and I’m glad its over! Seriously, how do you run out of all those needles?!