What a whirl-wind the past few days have been. Here's the story.
Claire was doing great on dialysis Wednesday morning. She was her happy, normal self; waving to all the nurses and her fellow friends on dialysis. After about an hour, I could tell she wasn't feeling too well and figured she was just tired. I got her to go to sleep in my arms she slept peacefully for a half hour. When she woke up, I could still tell she wasn't feeling well. The nurses noticed a change in her as well and decided to have the docs come check her out. No one could pinpoint what was wrong; the docs figured it may have been gas. I vented her through her stomach tube and got all the air out of her tummy and we decided to give her a suppository to see if that would relieve any pain she was in. Since her temp was normal, they sent us home and wanted to hear back from me later that afternoon to make sure she had pooped and was doing better.
She took her usual 3 hour nap when we got home and indeed had a good poop after her nap. She seemed to be doing better so I let the nurses know everything was well. She had an okay evening--wanted to be held a lot and was ready for an early bed time, but nothing too abnormal for the evening. Maybe it was just one of those days for her when you've just had a hard day and need some extra rest and attention. We can all relate to that!!
So we put her to bed after starting her on her nightly dialysis. Her heart rate and blood pressure were all within her normal ranges and we figured we were good for the night. My sister, Aleena has been visiting here with us from Monday - Saturday, so after getting Benson in bed, Jared and I ran to the grocery store to grab some milk and things for the next few days. After returning home and getting things settled for the night, I went into check on Claire. I'm sure all you moms out there can relate to the beauty of seeing your sweet kids sleeping soundly!! Sleeping, she was. But not soundly. She was breathing very rapidly, like someone who had just ran a few laps around the track. That wasn't normal. Something was not right. I checked her blood pressure and heart rate again as she was sleeping and it was not good. With a blood pressure of 126/65, a heart rate of 192, and a respiratory rate of 80 breath per minute, I knew something internal was wrong. We took her temp and it was 103.5. We called the Kidney Doctor and all he had to hear was her stats and he told us to get her to the Emergency Dept now.
I packed my bags, we stopped her dialysis, and checked into the ER at the Children's Hospital at 10:30 p.m. Thankfully, Aleena was here with Benson allowing Jared to be able to come with me. I didn't want to have to go by myself if I didn't have to. What a blessing it was to have her here.
Anytime anyone has a direct line to the veins which drop right into the heart there's always the risk on infection. A fever is the first sign of that infection. So if those two things come together (direct line to the heart and a fever) extra precautions are always taken and blood cultures are drawn to test for a possible infection. And that's exactly what happened. Claire's hemo dialysis line goes right through her blood stream and drops into her heart...and she had a fever. The high heart rate/blood pressure come along with the body's defense system to fight off an infection.
So they drew blood cultures on Claire right there in the ER. Before they even knew the results of the cultures (it takes 3 days to get the final results), they start her on antibiotics. They don't want to waste any time of fighting off a possible infection. Jared left to go back home around 2:00 a.m. as he had to work the next morning. Clarie and I finally got taken up to room 830 around 2:30 am and meet with the nurses and doctors there. Sleep (ha ha) finally came for both of us around 4:00.
The docs came in around 7:00 a.m. Thursday and Claire and I went down to do her daily dialysis on the 4th floor at 8:00. She was beyond miserable. Her temp was still high, even with Tylenol, and she was sooooo tired. She slept though much of the 3 hour dialysis treatment. During this time, the docs let me know that she indeed had an infection in her line. If the infection is "bad" the blood cultures will show it within the first 24 hrs. If it's not a "bad" infection, the cultures will show it within 3 days. Her culture was positive within 12 hrs. They said it was really good we came in when we did because in such a little person, those infections work fast and hard. It was already scary enough as it was with how 'sick' she got so quickly. Had we waited till morning the results would have been much worse with the infection going untreated for 10 hours longer. What a blessing that we caught it when we did.
So they continue to treat the infection with antibiotics after each dialysis session. It takes 1 hour to run the first antibiotic through her line and then 30 minutes to run the second. Thursday was a long day in the kidney center. But I guess we didn't have anywhere else to go...besides upstairs back to our room to sleep!!! And we both did finally get some sleep Thursday afternoon. The rule was that we could go home as soon as Claire was feeling better and her fever was gone (without the help of Tylenol).
Jared, Benson, and Aleena brought dinner out (made by a ward member) that night and we all enjoyed being together. Claire was great when the Tylenol was at it's peak...but then as soon as it started to wear down, she was beyond miserable again.
Jared's parents and grandparents were on their way to Branson Missouri and were planning on stopping by our house that night as their half-way point. Instead they came to the hospital. Jared, his Dad, and Grandpa Roberts gave Claire a beautiful blessing. We all felt of the beautiful spirit that attended Claire and felt a special feeling of peace.
Friday was a much better day. Claire and I slept as good as you can at a hospital ((they come in at 12:00 4:00 and 8:00 around the clock to check vital signs: heart rate, blood pressure, and temp)). Sleep and hospital are just not compatible words. We decided to hold off on the Tylenol and see how she was really doing. We went down to the kidney center for her dialysis and so far, no fever. She did much better during dialysis but still slept for half of it. We checked her temp throughout the morning and never once did she spike a temp. YEAH! Home was in sight!!
The thing about babies is that even though they can't verbally tell you how they're doing, you know. There are no lies. It's in their spirits...their interactions, their smile, their eyes. After she woke up from her dialysis and was getting her antibiotics, everyone in the kidney center knew Claire was feeling better. She was waving, smiling, and playing with her toys. No lies there. She indeed was feeling better. The kidney docs came out and knew as well that she was doing better. And with no fevers for the day, they said we could plan on going home that night!!
They will still be treating her infection for the next 2 weeks. The great thing is that we're already there 6 days a week for them to do that! So there's no need for us to stay there in the hospital for them to do that since we can just do it when we're there the next day! I guess there are advantages to being at the hospital so often!
And so we made it home Friday night and both slept like a champ!! Nothing like your own bed and no one getting you up every 4 hours!! Claire is doing much better now. We still have to be extra watchful of her for the next little while in case the infection spreads to any other parts of her body that need to treated differently.
The list of our blessings continue to grow. The day of miracles has not ceased!
Among many things, I am especially grateful this time for a blood pressure/heart rate machine, a simple thermometer, and the beautiful motherly instinct we all have in checking on our little ones sound asleep!
Sleep well...I plan on it tonight!
