48 hours post-op....

Today marks 48 hours post-op. Last night was a very good night for Danielle. Basically she has been sleeping consistently since our 2 hour nap yesterday afternoon. This has been almost our best news yet. We finally feel like we have her pain management under control. When she wakes she does fuss and cry but is able to either calm herself back to sleep or fuss for a bit, then settle down and fall asleep.  This has brought her MUCH needed rest. We are still doing piggyback Tylenol and Morphine every 4 hours for Tylenol and 2 hours for Morphine if needed. We have repositioned her almost every time she wakes, her preferred position is up on the boppy on her right side and a special pillow or donut under her feet or legs. Her legs after surgery were extremely stiff, and those of you who know how stiff Danielle can be....well take that stiffness times 10. It was very concerning I am finding out now.

The Neurosurgery team came in this morning shortly after 530 and did their morning look over. They didn't wake her which was really nice. I mentioned to them my concerns with the Nephrology team and what is going on with her kidneys. They said they would talk to the PICU floor team regarding that.
Around 6 this morning the Staff Nephrologist came in to talk to me a little bit about the concerns with her kidneys. He was SO nice. Much more kind and gentle than the student who was in just before 10pm last night! He stated his concerns with her labs and her kidney ultrasound....as well that her kidney function levels aren't the greatest. I expressed my concern to him because this is such a shock to us. We have had no issues with this before and why is it a concern all of a sudden? He explained it as something that will they will follow her for approx. every 3-6 months and stay on top of it so it doesn't get worse. That explanation to me was SO much better! She is at Stage 2 for Kidney disease. So kidney disease can be silent and it doesn't mean that she isn't urinating, because that definitely isn't the problem. Sometimes kiddo's can urinate and it isn't filtered thru the kidneys to get rid of the stuff the body needs to get rid of. Again he reiterated this is mostly as a result of her prematurity and also from being on high calorie formula for so long, as well as being given direutics in the NICU. So they ordered a nuclear radiology test today to scan her kidney's and check for scaring among other things. This is the first kind of test like this for her. We were very curious as to how it worked and honestly weren't too crazy about her being injected with the nuclear dye. So in the scan, the good cells in the kidneys basically eat up the nuclear dye and what is left shows if there is any scaring in the kidneys.
Her Neurosurgeon came up this morning around 930 and said he had been here since 6am reviewing again everything on Danielle, recent labs etc. Her increased stiffness in her legs brought him far more concern than we realized yesterday. His first thoughts this morning were infection, but then he was thinking, no, because she's on antibiotics and internal brain infection would set in at least 48 hours post op. He then thought that maybe she was having increased pressure from the base of her brain in the 4th ventricle so he went ahead and booked the Operating Room for her next week because we need to get that fluid off soon so he would do the original surgery from Monday next week, then he rethought that, and was looking at her labs and her kidney function, and said that those levels being so high could be affecting her body. Just after he said that he looked at her and she was raising her legs on her own and moving them as I was holding her. That right there he said was really good news and that we are taking a day at a time and better labs are showing improvement in her stiffness and that he was content with. Lots of emotions in a very short time for him and us as well. He said we are staying in Intensive Care for now. She is not as Critical anymore but still needs to be in the Intensive Care unit because her brain still went thru a type of trauma during the brain surgery. She continues to perplex him every day and he is continuously looking and staying on-top of everything about her. That right there is the sign of a remarkable doctor.
Later this morning one of the Neurosurgery Residents, who we know well, came in and changed Danielle's bandages. The top incision is far larger than we expected. The second incision happens to be an incision from her February surgery which they re-accessed. That was surprising to us because they said they would not do that, but her head is so small and she already now has 4 scars so I am glad they did not cut her again if they didn't feel the need to.

This top incision is a lot larger than we had envisioned. You can see it is 'L' shaped and that is where the reservoir is for her shunt and they inserted the shunt catheter there and slid it down behind her ear. It is hard to see behind her ear because her skin is so pale right now and I can't move her to get a good angled picture. This incision is ouchy, it explains a ton as to her increased pain level.

Poor babe.

She slept all morning and didn't require any morphine or Tylenol for about 5-6 hours which was good news. But as soon as she wakes I ok them to give it to her because we cannot fall behind on pain control like happened on the first day. This afternoon her nurse took her down to Nuclear Radiology for her scans. They had come up late morning and injected her IV with nuclear contrast and it had to sit for 4  hours before the scan. I did not go along, it made me extremely nervous so I sat in her room and tried to be very patient waiting her arrival back. I was pleasantly surprised when she returned just over an hour later, the nurse said she slept thru the entire scan. What a little angel.

This evening Neurosurgery had called the Urology team to come speak with us. The difference between Nephrology who we had already spoke to and Urology is that Urology deals with more of the plumbing and the bladder, plus the surgery side if need be. We spoke to a Resident and she was very very nice. She asked at least 100 questions which was ok, and informed us of what they saw on the scan today. There is some scaring of her kidneys and they are trying to figure out where that came from since she has not had any UTI's until now. Her Kidney function is lower about 45% and 60%, stage 2 so it does need to me monitored. She ordered a straight cath on her and the nurses came in and did that. That will be a more accurate urine test and as she said they will look for what they need and be done and move on. We liked her motto! They did a straight cath on Monday but apparently it got contaminated in the lab. Ugh.

So tonight hopefully she will continue to sleep and get lots of healing rest. It has been very quiet up here today and last night which was fantastic. The unit is still at full capacity but we are at the back which is great. We have not heard any game plan on going home. If for some reason he still has the OR booked for next week for the other surgery then we would not go home. I am not very comfortable at this point taking her home right now. She is still just a few days past a serious brain surgery and has a LOT going on. They mentioned we would be here at least a week and that is what I expect. They are still figuring things out on her. I expect them to get another MRI scan on her maybe tomorrow or Friday to again monitor her shunt settings and take a look at that cavity on the left.
A day at a time. An emotional roller coaster, yes. But I have to say I feel a LOT less tense here than I did at home. We have been told and shown several times over the last week how carefully she is being monitored and that is a really comfortable feeling. If being in the PICU means that they continue to watch her extremely close for anything, well then so be it. We will adjust. We have still been unable to get a room at the Rossi House, they are still full. Which other than a place to keep our stuff and a clean shower we are managing just fine. I throw my socks away after I use the Family lounge shower, its all good :-0 This rainy weather today made for great napping, mommy took advantage of that a little bit when Danielle did and it really did us both good!

Our little Dylan really deserves the big brother of the year award, he has been such a kind soul during all of this. He is in great hands with each of our parents right now and we have heard from my Mom and Brad's parents both how he is really missing his little sister. He even woke Sunday night before we left and came to me, he looked very sad and I asked him what is wrong, he said, 'I'm not doing so good Mom, I really want to go to the hospital with my sister.' That broke my heart, he is so concerned and absorbs much more than we realize. There is one thing for sure Danielle misses him dearly and it will be a very special day when they are reunited together at home. In the mean time thank you to our families for putting him first in your lives this week and caring for him and giving him lots and lots of love. We miss him just as much if not more than he misses us.~

 Another reason why being a parent is such a special gift. While it is extremely hard watching our children endure so much pain and it is very hard to understand and a helpless feeling, we do our best to comfort and to show them unending love. I do not know why our girl is going thru all of this right now but one thing for sure, even today it was reiterated to us, she is teaching daily life lessons to a lot of people around her. Seems so small for all of the pain she is going thru, for the suffering for others to learn, for that.... my heart breaks. We as parents try and do our part to walk with them thru every battle and loving them along the way.