Madison's Birthday:

June 8, 2010

From the Word:

"Before I formed you in the womb I knew you, before you were born I set you apart." Jeremiah 1:5

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13-14

Wednesday, June 29, 2011

Her Health in Question- Now We Have an Answer

This post is meant to serve as an update on Madison from recent events at her 1 year check-up with her Pediatrician.

Madison's 1 year check-up was on Monday, 6/27 and I'll confess that I just knew in my heart I was gonna get bad news about Madison's weight at that visit. Call it my mother's intuition or my ESP, but I had a feeling her weight was not going to be satisfactory. For about a month now Madison's appetite has slowly diminished and she has been very cranky at meal time. I was not bothered by this at first because she had two teeth come in within a week of each other so I figured the slowdown in appetite was because of that. But lately she's grown increasingly finicky over food and really doesn't eat much at all. But she loves her sippy cup with some milk or juice in it. Back to the doctor's visit. To my shock and horror, when I put Madison on the scale on Monday she weighed only 20 pounds and 6 ounces- that was 3 ounces less than she weighed 3 MONTHS AGO at her 9 month check-up. She had not gained a SINGLE ounce in a 3 month time period and had lost a few ounces at that. The pediatrician's growth charts indicate Madison should weigh upwards of 25 pounds by this point and be closer to 31 inches long- she measured 29 inches. So, yet again Madison has a deficit: 5 pounds and 3 inches.

As I suspected, the pediatrician was a little freaked out by the lack of growth and blurted out words I was not expecting to hear about Madison. She said, "This is a case of failure to thrive in childhood." Now, I fully embrace that I tend to be over-reactive and admit that every little thing freaks me out about Madison's health but give me a break!!!! She just said my child wasn't thriving!!!! I temporarily froze in my chair when I heard those words. Because I am not a medical professional and really had no idea what that meant my mind began racing with horrible thoughts. It was not a pretty picture of what was gonna happen to my poor little girl if she didn't grow. But the doctor quickly moved on and I struggled to snap out of my panicked mental state to listen to the rest of her report. She suspected Madison might have another urinary tract infection which would result in a decreased appetite and before I knew it she was giving me instructions to report to the hospital for bloodwork. Before we could go, the doctor wanted me to cath Madison for a urine sample they could test in house. Insert funny story #1 here: as previously mentioned I had to put Madison on the scale to weigh her at the beginning of our visit. What I didn't mention was that when it was time to weigh Madison, she took THE world's largest pee-pee while I was trying to take her diaper off and get her naked self on the scale. Pee was everywhere followed by a poop. The nurse stood there for 5 minutes waiting on Madison to finish her business so we could weigh her- seemed like an eternity. Because Madison had so thoroughly emptied her bladder during the weigh-in incident, I retrieved virtually nothing for a urine sample when I cathed her.

At this point it is important for me to insert that Madison developed a horrible urinary tract infection in April this year after a battle with a very nasty gastrointestinal bug. She quit eating all together, ran a fever, turned white as a ghost, had constant vomiting and diarhhea, and was lethargic for days. Scared us to death. As a result, we took a lovely trip (insert sarcastic tone here) to the ER for bloodwork and IV antibiotics. But the infection cleared and Madison became Madison again.

Back to the doctor's visit. After the doctor's check-up and diagnoses, the nurse returned with our hospital orders and the vile of urine for me to take to the hospital for testing. She said that because there was so little urine, they couldn't do a dip-stick test in-house and that the hospital would have to do lab work on it.

On my quick drive to the hospital I called Da-Da to inform him of our trip to CRMC and of course, began having flashbacks to our visit in April and how sick Madison got from that UTI. We arrived and went to the lab with our orders and they began working on Madison. I was asked for the urine sample and now I insert funny story #2: upon handing over the bag with Madison's urine sample the lab tech exclaimed, "There's nothing in here!" To which I thought, of course there is, they gave it to me at the pediatrician's office and put it in this special bag for me to carry over here- why would they send it with me if there wasn't anything in there? But she kept on commenting on the empty nature of the vile. So, I go look at it while she's holding it and sure enough- there's no urine sample in there. I immediately started feeling through Madison's diaper bag to see if the sample had spilled inside or if there was a hole in the transport bag that allowed it to leak out. But alas, there was no explanation for the non-existence of the pee pee. I'm sure to the lab techs it seemed odd because I was perplexed myself and began trying to offer explanations for why there was no sample. The more I tried to explain to the lab techs the more curious they got. I thought to myself- do they think I stole my daughter's pee? What would I have done with it? Do they think I dumped it out? Do they think I would knowingly bring an empty vile here for testing? I don't know what they were thinking but I knew the pee pee was gone and there was none for testing. What a mystery.

Anyways, Dustin and I suggested we cath her again to see if we could get another sample if they could provide us with a cath kit. Thankfully, I had filled up Madison's sippy with juice before we left that morning and had been giving her some throughout the morning to combat her boredom and fussiness during the doctor's visit and immunizations. That was the smartest thing I did all day because Madison was full to the brim and her second cath of the day was much more successful in producing a sample, so much so we almost had another incident like the one I mentioned earlier. After the cath and drawing Madison's blood we were dismissed and sent home to wait for two days on results.

That brings us to today, 6/29. The pediatrician's office called me this morning and reported that all bloodwork was normal (praise the Lord!) but that Madison does indeed have another urinary tract infection. Which is shocking to me because for the past two months since her last one, Madison has been the happiest, funniest, most care-free baby ever, a stark contrast to her behavior when she got her first UTI in April. She's had NO signs of illness: no fever, no vomitting/diarhhea, no lethargy, no paleness- none of the symptom that accompanied the UTI before. The decrease in appetite is the only thing we've noticed. But her doctor believes the previous UTI may not have totally cleared and has been continually aggravating Madison's little body to the point it has suppressed her appetite, thus resulting in the lack of weight gain. And let me go back to that "failure to thrive" dianosis for a minute. If you've never heard of it, like I hadn't, it's a term given to children who cease to gain weight or grow in length for a period of 3 consecutive months or drop 2-3% below the healthy growth curve, both of which Madison has done. It can be serious if left untreated, affecting physical, cognitive, and social development but the doctor believes this persistent UTI is the only thing affecting Madison and that once finally treated, she'll be able to pack on the pounds and leave that awful diagnosis behind.

Within an hour of receiving word from the pediatrician about test results, Madison's urologist from Vanderbilt called me at home. They had already received word of the urine culture/results and were calling to check on her (gosh, I love that place) and say they would do some follow-up testing when we go to Spina Bifida clinic in July.

So, what have I learned from this latest scare with Madison:
1. Pee happens. Just be prepared with lots of wet wipes and disposable pads.
2. Juice in the sippy can be a life-saver- I'll never leave home without some from now on.
3. It's never gonna get easier to see my precious girl get poked and prodded by medical professionals. I wanted to tear her away from them while they were drawing her blood. She cried as if they were literaly drawing the life out of her.
4. Pharmaceutical companies are making serious bank off the Rawls family. Madison's got a new antibotic for the UTI and I'm sure she'll get a new prescription regimen from her urologist when we visit Vanderbilt next month.
5. Don't jump to conclusions about medical diagnoses when you hear them. Let the doctor explain them in detail, ask questions if you don't understand, and stay off the internet unless reading from a medical facility's site such as Vanderbilt, John Hopkins, etc.
6. UTIs are probably going to plague Madison for the rest of her life due to the Spina Bifida and its affect on her bladder, kidneys, and bowels. We likely will make many more trips to the hospital for instances like this. Therefore, please continue to pray for her daily healing and growth.

We are hopeful this infection will be cleared quickly and Madison can begin to put on weight and grow like she's supposed to. We have a couple of follow-up appointments scheduled over the next month so I'll be sure to update the blog with her progress in this situation.

As always, thank you for the prayers you say for our family and our sweet Madison. We are continually encouraged by them and praise the Lord for you for offering them- Phil. 1:3.



1 comment:

  1. Erica Drew RodriguezJune 29, 2011 at 2:52 PM

    Mandy - you continue to be a source of inspiration to me not only spiritually but as a mother too. I never know why God ask so much of certain people but I think in your case he knew you could do an amazing job with this precious angel girl. You have offered me a great perspective on how a mom feels while her child deals with doctors/nurses and hospitals. It is important as a nurse not to become bogged down with medical terminology which can be confusing and frightful to those who are unfamiliar with their meanings. Through your blogging you have taught me such an important lesson for nursing school - to "put yourself in the patient's shoes" (and family too). Thank you for your honesty. You inspire all of us to be thankful for our blessings as you are with your sweet girl. Even when it is difficult and you experience dark days I pray that you will always find the strength to be renewed. You are an amazing mother in God's eyes. This does not go unnoticed! You are in so many people's thoughts and prayers. You have the most beautiful daughter. She embodies peacefulness with an angelic smile like I have never seen. Stay strong in the Lord. Whenever the going gets tough I repeat over and over..."I can do all things through Jesus Christ who strengthens me". - GOD BLESS