The remainder of our week went slow and steady! Wednesday and Thursday brought more testing for Danielle. We had spoke to Nephrology and Urology and they wanted to do a VCUG Scan testing Danielle's bladder to make sure that she didn't have any bladder reflux. Thankfully this test came back negative! She was sleeping really well Wednesday into Thursday, waking only for brief times during the day. We tried to slowly wean her off morphine but it became very clear that she definitely needed the Tylenol every 4 hours to take the edge off.
Urology did a repeat urine culture on her and tho it did not grown any bacteria it still showed the UTI in place. She is still on the antibiotic and will be retested this Wednesday at home. They are keeping a really close watch on her labs seeing if any of the numbers change showing them anything additional may be happening with her kidneys. Her potassium, Creatnine and BNP all tell the doctors what is going on. She does have a GFR of 42 which to my new understanding she does have Stage 3 Kidney disease. Again this we are thinking all stems back from her being premature. This is not something new, yet it is something that probably has been gradually getting worse over the past 4 years but because she has not had to have these labs regularly it didn't raise any concerns. She will be followed again in a month by Nephrology and at the beginning of June with Urology and they will do a couple more tests to test for some different things to get a good baseline on her. They are monitoring her for what is called Nephrocalcinosis:
Nephrocalcinosis is a disorder in which there is too much calcium deposited in the kidneys. This condition is common in premature babies.
***If your child is diagnosed in stages 1, 2, or 3 of CKD, she probably won’t have many symptoms, but her kidneys won’t be functioning the way that they should, which can lead to complications. Here’s how we treat these complications:
- If your child’s kidneys aren’t properly regulating the acid levels in her blood, this may result in a condition called acidosis, which doesn’t have any symptoms. We can treat acidosis with bicarbonate, an oral medicine that balances the acid levels.
- The kidneys regulate the level of calcium and phosphorous (minerals necessary for bones to continue to grow) in your child’s body. If they begin to lose the ability to do this, we can supplement those minerals with activated vitamin D, medicines that prevent the absorption of calcium and phosphorous, and regulating her diet.
- Your child’s blood pressure may start to go up, and if we treat this with blood pressure medication early on, we can minimize the risk of cardiovascular disease as the condition progresses.
*** The good thing about what is listed above is that we are already doing Vitamin D supplements. Our pediatrician is HUGE into Vitamin D supplements as many people, children and adults, are walking around Vitamin D deficient and don't even know it. And soaking up a little more sun doesn't raise those levels :) Danielle's blood pressure is fine but will be monitored. She is not on any medicine for any of this at this time and we hope that remains.
Thursday her Neurosurgeon turned her care over to the PICU floor docs. She was doing pretty good, resting, sleeping and beginning to eat and her vitals were well, so from their standpoint she was recovering well. The PICU thought that her level of care was stable enough that she could be transferred to 3rd floor Peds Recovery, so that is where we went.
We got to a nice private room that even included our own bathroom! This was an amenity! Danielle settled in really nicely and she was even able to put on her own pj's! Oh how that had to feel so good. She was non stop smiles and we heard a few words from her. We didn't have an order for morphine on this floor so we were officially weaning her off at this point. The evening went well, I was able to get out for a few hours and head into work and have dinner with my Mom, and Daddy held the fort down. But as the evening turned into night she was restless. She slept but not as sound as the previous two nights and by 430am when Brad left for work, I was in the recliner holding her. Neurosurgery came in about 630am and checked her out. I asked about a repeat MRI scan and they didn't think it was necessary, yet her bandages did need changed.
About 9am the PT and OT came in to check on us and that is when they first mentioned we may be going home! I was surprised yet feeling confident that if they thought we could go I would welcome that idea. Her IV had come out and they changed her antibiotic to PO. She was so happy to get the IV out of her foot and this made feedings a little easier yet her head was so sensitive that it made holding her a bit of a challenge. So home only made sense at this point vs. another IV poke!
By 11am the floor docs and come in and said that they would be willing to discharge her if I was comfortable. Of course I was! Resting and healing at home would be very very good for her. Neurosurgery had come up to change her dressings, about 5 minutes later they still came unstuck from her head but it was worth a try. They don't have them completely covered because the air is good for them but it is EXTREMELY nerve wrecking seeing the stitches as the bandage pokes up! I also asked them to check both of her shunt settings before we went home so I knew that they were at the correct setting still.
By about 2pm we were ready to start heading home! I did some picking up and soon realized that we had enough crud, bags, etc and how in the world was I going to get this stuff plus Danielle to my car?! Brad was working and didn't even know we were getting discharged. Well my brother in law came to my rescue! Thankfully, Nick was already down there at an appointment and stopped up to see us just at the perfect time! He was a tremendous help and sat with Danielle while I pulled my car up so I didn't have to take her out into the wind and cold weather that we had on Friday. As soon as I put her in the stroller tho she knew we were heading home and she was so happy. Sweet girl had just been thru a whirlwind of a week and a serious surgery and home was going to feel so good!
This weekend brought a lot of rest and relaxation. Friday night our nursing company came back out for a 2 hour appointment and did a re-cert on Danielle. They went over everything additional that they will be looking for. The timing was perfect as they will start back up on Monday. Her level of care will be the same yet it will be crucial to keep her stimulation way down. We barely have the TV volume up and Dylan has been gone all weekend with my Dad so there has not been any extra noise. She is very content laying in her bed during rest time with only the noise of the fan or during the night sleeping ever so sound in her bed. Saturday morning tho I woke in sort of a panic, she had fallen asleep Friday night at about 630 after not taking a bottle. Saturday morning at 730 she finally woke up and I went in to find her top bandage completely off of her head! Aaaahhh, it freaked this Mommy out! I quickly washed my hands and put it back on, that will be a challenge and it has already proven to be!
She hasn't been too active, only occasionally playing with her toys and kicking her legs up and down. We have heard her sweet voice a little bit here and there but she does have big smiles on her face. Her head is extremely tender. While holding her it was not uncommon for me to rub the back of her head and play with her hair, now even a touch of her hair makes her cringe and whimper. It breaks my heart yet I can only imagine how extra sensitive and ouchy her head is. Tylenol is still needed about every 6 hours. She is drinking her bottles ever so slowly but that is ok. She isn't back at her full eating schedule yet but that will come, after all it was almost 3 days that she didn't have any food so it will take a bit for her tummy to be hungry again like before.
Of course just our luck that the pharmacy's in CR do not carry the liquid form of her Cipro antibiotic. Sometimes the U prescribes difficult meds to get. I should have known. so we did try the pill form crushed up in her pouch food and that was an epic fail. She began vomiting and we knew that wasn't going to cut it. Today Brad went back to the U and got the liquid form that we will continue for 2 more days.
It has been a bit of a challenging week for us all, yet it did seem to go by fast for me at least. I was ever so thankful for our families to helping out with Dylan and my Mom who came here from PA to save my sanity while Brad went back to his regular work routine on Tuesday. And of course my so wonderful Aunt Ellie who works at the U and who came to visit us several times during each day to check up, bring me breakfast and it was great to have her take on what the doctors were saying and the nurses as well. I don't know what we will ever do when we are there for appointments or for surgeries when she decides to retire one day!
This weekend we all are really missing Dylan so much yet it was crucial for Danielle to keep our house as a healing place for her, so he continued plans to be in Des Moines with my Dad. He has had a lot of fun at the park, making bon fires and today even attending Professional Bull riding! It will feel so good to have him home tomorrow evening, I can't wait to do a big group hug with both my kiddo's. They know how special that is and it is an important part of our daily routine.
I can't help but reflect back on a Daily Devotional that was in my readings from Monday, April 15th, the day of her surgery. It says this, :
The strength of our faith is in direct proportion to our level of belief that God will do exactly what He has promised. Faith has nothing to do with feelings, impressions, outward appearances, nor the probability or improbability of an event. If we try to couple these things with faith, we are no longer resting on the Word of God, because faith is not dependent on them. Yet we tend to retreat from the exercising of our faith instead of welcoming it. When trials come, our response should be, " My heavenly Father has placed this cup of trials into my hands so I may later have something pleasant." Trials are the food of faith. The closer we come to this point in our inner being, the more willing we are to leave ourselves in His hands and the more satisfied we are with all of His dealings with us. Then when trials come, we will say, " I will patiently wait to see the good God will do in my life, with the calm assurance He will do it."
That explains so much in our life. We need to follow and put our trust in his hands and thank him daily for that he has done. Life lessons? Absolutely! We are thankful, and praying for a very uneventful week and lots of recovery for our girl.~
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