Monday, September 20, 2010

Update on Nat ....

If you read the previous post, then you know that Nathaniel has a raging infection in his foot. After I wrote that post, it was decided that waiting around in the hospital for lab results to come back was not necessary. The MRI showed a clear infection, but only a shadow on the bone, not really an infection in it yet. So we had to wait the 48 to 72 hours for the sensitivities on the blood work to grow out. So it was decided that Nat needed to be at his specialists appointments on Friday at UCSF and we were released.

We headed home and I cleaned the car, packed for the trip and got everything ready (after all that had been on the agenda for Thursday, but we sat in the hospital all day!). I also finished a VERY important order for a customer that I had put off to the 11th hour (pictures to come some time!) and tried to get a bit of sleep. We left at 5 am to head up to UCSF for a long string of appointments.

First up was an ultrasound of Nathaniel's kidneys and bladder. I am not sure why these used to be normal ultrasounds are making me a crazy worry type mommy these days, but they are. In April the ultrasound was not good, and Friday wasn't great either. It seems like Nathaniel has some sort of calcified growth on his bladder, near the opening where he drains. At this point we are making careful notes of it and watching it closely. It also seems that Nathaniel has a large amount of debris in his bladder between catheterizations. He is very small, so we use a fairly small catheter, but the urology team decided we will try a larger catheter and see if that helps he debris go away better. He has not had any infections for months, but the debris could make infections quicker to onset and that is not good. It was also decided that it is time for Nat to have a urodynamics test done. Oh joy. I am NOT a fan of those tests, but it looks like we will be heading back to UCSF in the next 6-8 weeks to have it done. I was reminded that it has been since 2007 since we had one (really?? I does not feel that long ago!) and that we need to keep track of things. So I guess, in the name of being a good mommy, I will make another 500 mile trip for this test I hate :)

Next up was Infectious Disease Clinic, where they took one look at Nat's foot and made appointments for us at Ortho Clinic and Plastic Surgery Clinic. Really? Plastic Surgery?? WHY??? Because I guess there is no longer a Wound Care Clinic, it is now taken care of in the plastic surgery clinic.Of course, that makes so much sense.... whatever! Anyways, IDC says that the wound was clearly an internal infection that HAD TO come out, and with children that have Nathaniel's other health conditions this has to be treated seriously and aggressively. Fun times.

Next up was the appointment at Spina Bifida Clinic.

 Had a great talk with Nuero about a bunch of the research I have been doing on brain processing issues, how Nathaniel learns, and best ways to test and support him. I loved this exchange: Me: "I know Nat doesn't have hydro, but he shows many of the symptoms and behaviors of someone who does, is it possible that we are seeing residual damage from the sever hydro he had inter uterine?" Dr: "He has Spina Bifida, do we really have to label WHY his brain works different? All kids with SB have processing issues to some degree." Me: "Yes, I understand that, but how do I get agencies to help him and support him without the labels?" Dr: "Are they so dumb that they can't see it?" Yea.... the difference between doctors and people who get SB, and those who don't. Unfortunately I have many who don't in my life, and I need the testing and the labels to access the services. So the sweet doctor gave me a nice long list of tests, which was pretty much on board with what I was thinking needed done!

Physical Therapy and Internal Medicine came in together. Now I really adore these two women. They are always so great at helping, trouble shooting and give real answers! They both looked at the foot, scooped Nat up and trotted off to Ortho with him. Ortho is NOT my favorite person there. Actually I try to avoid her at all costs! I have a Ortho that we adore here at home, and the one there drives me around the bend, but this day it was unavoidable that we saw her. She is severely ADHD (my diagnosis for her behavior!) and can't sit still, can't just see one patient at a time and can't give the same answer twice. Ugh. But she was not happy with the wound. told us the things we already knew (stay off of it, get it clean somehow and make it better), well DUH! At least we talked her out of the casting that she wanted to do, because last time that was DISASTROUS! Then we were bundled back to SB Clinic.

Your head spinning yet? Mine was by this time. I was tired (I slept little, and drove 240 miles to get there that morning!). I was worried about my little man. And I was trying to make sure everything that needed done while we were there got done.

Now, even though we weren't done with SC Clinic, we needed to head up to Plastic Surgery Clinic, because they closed first. We were the very last patient seen there, but that made it nice and quiet. The doctors took one look at the foot and decided that draining was probably a good idea. They got everything prepped, and made me sign all of the surgical papers, but it was so surreal. I mean we were going to do a surgical procedure right there in the clinic office. Nat has very limited sensation in his feet, so they only did a lidicane numbing, and the sweet boy laid in my lap while the surgery was done. What a freaking trip! As soon as they made the first cut this totally AWFUL smell filled the whole room. I know I am sensitive to smells but I looked around and everyone was holding their breaths. It smelled like the worst hospital sick you have ever smelled, like death of the tissues and all I could think was "get that death out of my baby boy!" I was cradling Nat in my lap, singing him "Lord I life Your Name on High" with tears streaming down my face BEGGING the Lord to help the doctors get all of that nasty out of my little man. It was awful. At one point I heard the lead doctor say to one of the residents, "It didn't look this bad, but with kids like this you can never tell, that is why we are aggressive. This is REALLY bad." I am so glad that I was persistent and kept asking for people to treat him aggressively. I can't even imagine what would have happened if all that nasty stayed in him! Overall, he procedure was about and hour and a half, and Nat has a large deep hole in the bottom of his foot now. A hole that needs the dressing changed and packed on twice a day every day.... do you hear me weeping? Nat is in a lot of pain now, but already I am seeing improvements in his health.

After all of this we headed back down to finish SB Clinic. Everyone was happy to hear that the wound was drained, and that it WAS as bad as we were thinking so it is good we treated it. Urology came back in again and they want us to also do a clean out and restart Miralex. I could have cried on the spot. I HATE clean outs. I HATE Miralex. It makes Nat so loose and we have never found a dosage that works for him. After all that we had been through this day that was NOT the news I wanted to hear. I will follow doctor's orders.... but they didn't tell me WHEN to do this, so I figure we can get a little stable first, right? SO not looking forward to this ... again. Sigh. But with that charming news, and a final check by PT and Dr H, we were released to head home. Appointments started at 10 am, and at 4:30 pm we were told we were  done. What a day. For anyone who has never had to do clinic..... it sucks, it is overwhelming for mommy, it is long and tiring for patients and the information overload is unimaginable until you have been there. But it IS better than waiting to see each of those doctors individually.

We piled back in the car and headed south.... 240 miles south back to home. On the way home we stopped in Salinas to eat dinner (a SPECIAL treat of Outback, since we had a gift card!) and I got stuck in a DUI check point. Seriously. I told the officer, really dude I have NOT had a drink (although it would have helped at many points!) but I have been through a week of HELL... that is why I can't walk a straight line! I also thought we were going to run out of gas at one point. I was gifted with gas cards that paid for almost all of the gas to get there and back (thank you so much Lord!!) but I was looking for  a station that I usually don't look for... it was funny. But we made it, with a FEW miles to spare, we found one! All in all, we rolled back into the house at 11:30 pm, a mere 18 hours after we left that morning. Oy Vhey!

So far the worst part of all of this (besides the exhaustion) has been the wound packing and dressing. I am SURE that the Lord has me confused with someone else. I am NOT nurse material. For most of my life I have passed out at the sight of needles in skin, I throw up at any random gross smell and I have the weakest stomach in town. But somehow I have this darling son who needs all of this special care. I get to catheterize him every 2.5 hours all day every day. He is 10 and still has regular BM accidents. He spent 3+ years vomiting EVERY time he ate something. And now he has this hole in the bottom of his foot that has to have this gauze dressing stuffed into it twice a day every day. First comes the undressing, removing the bandages and pulling out the packing. Picture 1/4 inch wide gauze all soaked through with blood and puss being pulled out like a 3 inch long snake from the bottom of his foot. Gross hu? Then I get the great joy of trying to stuff the clean piece of packing back in there. Oh man. I think I am going to loose A LOT of weight in this process. The first time Saturday morning only took 45 minutes, and I only got sick 3 times in those 45 minutes! (good thing I thought to clean the toilet first!) Things have got a little better, but it still takes me at least a half an hour and I have yet to do it without getting sick. Thank you lord for growing me in this way.... NOT! Dude! Don't we go through enough on a daily basis without this??

Saturday was low key, as we kept Nathaniel down and I tried to get some work done at the store (I hadn't been at the store since Monday!). Nat did well and I could see him getting stronger throughout the day. Sunday was even more low key. I was so tired that I could hardly keep my eyes open. I did make it to church, which was nice, but after that I headed back home, where I crawled into my jammies and we watched movies and napped all day. Nat did complain A LOT of pain, but I tried to keep him as comfortable as I could. Today we head into the pediatrician's office first thing to check out those labs. There is still a strong chance that we will need a PICC line today (praying for the Lord's will in this!).

So now that you are all caught up to where we are currently, we are going to head off to the doctor's office and see what the next chapter in this journey will bring.


{april kennedy} said...

we avoid ortho at UCSF at all costs too. She drives me up one wall and down another. it has been two years since we have been to clinic and forever since having an urodynamic test done. we are so far behind...but it all costs us sooo much money with blue cross. uughh. I loved the conversation with the dr about him getting that he has SB. last time we were there asking for help getting some sort of wheelchair for long outings and vacation the dr looked at me and asked 'why?'. I said 'really' and got up and walked out. who was the dr you talked to? maybe it is time we go back!!

glad nat is doing/feeling better. you are always in our prayers. good luck with the wound care...i had to skip over all the deets or i would have been passed out on the floor!!