Day of Surgery - February 23, 2010

Today was another one of those lessons in don't think you know the plan. Today's surgery was to take 6.1 mins (not including anesthesia) so with surgery check in at 7:45 am we felt there was no reason to believe we would be taking her home by 12:00-1:00 with one more part than we came in with.

Each anesthesiologist has their own way of handling procedures. Most do not want parents to go back with their kids after they reach a certain age. In talking with the anesthesiologist today he knew that Sadie was a bit anxious about the procedure, but she wanted to try and go without any pre-meds because those make her so groggy, so he offered to allow me to go back with her until she feel asleep. Sadie got a great kick out of the outfit I was wearing to walk her back.

Here is Sadie and I just before we walked down to the surgery room; it was wonderful to get to go back with her, but also hard. Her least favorite part is when she starts falling asleep. Such a feeling of loss of control. I am so proud of how brave she was!

Once the anesthesia was administered the surgery itself only took about 30 minutes. We meet with Dr. M and he said everything went in just as it should. No brace for 1 week and weight only as she can, but give it a few days before she tries. She will follow up with the doc in 10 days and then it will be several months before we see him again to check the progress of the inserted screw.

An hour after speaking with Dr. M we were called back to recovery as Sadie was then awake. At this point the normal procedure is: get the child under controlled pain and confirm they can hold down liquids. Typically at that point they will send you home. When Sadie was brought to us she was obviously in pain. She stated she had been awake for awhile, but that they had been working to get her pain under control a bit before they called us back.

Sadie's pain stayed at a 7-8 for HOURS... they were giving her full doses of pain medication for her "age" and then bumping those doses up thinking that maybe her body has a higher tolerance due to the medications she takes. This went on for a long time, with pain medication being given consistently every 20-30 mins with NO relief in pain. When I say NO relief, I mean, nothing was doing it. She was having a burning sensation and then large pulses of pain and with every bit of pain meds they gave her she was increasingly more tired, but unable to rest at all due to the pain. It was awful! At about hour 4 they decided to give her something to help her sleep for about 30 minutes while they gave her even more pain medication in hopes that by the time she woke up she would get some relief. As this medication to help her sleep was being put in her IV she immediately fell asleep (it was actually some what scary to watch) and within moments the nurse was hooking her up to monitors as she must have realized what we didn't, she wasn't breathing very well. Her oxygen levels had dropped and the nurse was trying to arose her saying "Sadie, take some deep breaths for me" over and over. In addition she pulled out oxygen to help Sadie's levels go back up. In the midst of all this her blood pressure also went up quite a bit! It was a heart wrenching 20 minutes. When she woke up (which was as fast as her falling asleep) it was in immediate and aggressive pain. It was as if she had been knocked out and then brought back right to the place she was 20 mins prior. At this point they administered morphine. 20 mins later, more morphine, 30 mins later more morphine. At this point we knew she was staying and the pain was sill there... as if they had not given her anything.

Soon they moved her upstairs and admitted her and the doctor (not Dr. M) came to see her. He took off the ace bandage that was over her ankle to make sure there was nothing obvious going on there and then re-wrapped the ankle, but much looser then it was applied. Literally within 5 minutes of him re-wrapping the ankle looser the pain was going away. She went from cringing in pain, tears streaming down her face and stating a pain level of 8 to no longer grimacing and reporting the pain was much less and closer to a 4!

Seriously it all came down to the bandage being wrapped to tight! She had been complaining that her toes were feeling numb, but no one thought more of that than the fact she just had surgery on that foot. Now it is clear the wrap was so tight it was cutting circulation and with there being present swelling from active arthritis the tight bandage just amplified pain in a huge way.

Although we were somewhat frustrated that we didn't' realize that 4 hours earlier, we were RELIEVED that is all it was! After that Sadie started feeling very ill due to all the medication that they had given her. They then had to give her anti-nausea medications to help her feel a bit better.

By 6:30 (6.45 hours after surgery) she was asleep for the first time in a solid sleep. The poor girl was SO tired!!


The first sign of peace! Seriously she was a warrior today!!



I wanted to share the color photo too in order to show her tired eyes. Sadie rarely if ever gets bags under her eyes, but her eyes are so puffy, so red and have the hugest bags I have ever seen this girl have. Still at 10:30 those bags are there. This day took a toll on her, but I will say her spirits improved knowing that it was the fault of an ace bandage and that the surgery didn't cause her to feel that horrible in itself!

Thank you to all who continue to pray over her. We had hoped that 2010 would bring us one year of no hospital stays, but we all were able to laugh as we said that maybe we were just getting this years stay out of the way early.

As the nights goes on I feel confident in stating that we should be discharged early tomorrow morning. She is doing much better with pain and she is no longer feeling so ill. She is sleeping and although a room-mate was just brought in with us, it doesn't seem to be bothering Sadie at all!

Thank you again for the prayers... they got all of us, in our own way, through today. God is faithful through all!

October 17, 2008

Thank you to all who were praying for Sadie. We arrived home Wednesday afternoon and all felt the exhaustion catch up. We had a very quite night and went to bed early. Sadie went to school for a few hours Thursday, then came home to rest and will do the same today. We expect that by Monday she should be well on her way!

Medical stuff; she will continue to take the anti-viral medication several times a day for four days and then will take it once a day for a month at which point we will determine if it needs to continue or not. The anti-viral medication is pretty hard stuff and can crystallize in your kidneys if you are not flushing them well so Sadie getting in tons of fluid is critical to keeping us from any future hospital visits. She is doing the best she can but at times her tummy is hurting from the medicine, so it’s a cycle. Please continue to pray that she can get lots of fluids in. The other big deal is that her attending doctor said she may need to no longer take Remicade. She advised that she hasn’t been the one following Sadie, so it isn’t her call, but that if her body has responded this way once, it might do it again. Her Rheumatologist is going to review all this and call in the next week or so and we will come up with a plan.

There isn’t much more to report now and hopefully not too much to report in the future (no report is good). We are very happy to be home. Happy that we all get to celebrate Syrah’s birthday together as a family and enjoy our time together. We are extremely thankful that Sadie is getting well and grateful to everyone’s support over the last week. Thank you!!!

October 15, 2008

WE ARE HOME!!! More information to come later, for now we are going to settle in and get some much needed family time. Thank you to everyone who encouraged Sadie through prayer, visits, cards, phone calls and signing the guestbook. Thank you!!!

October 14, 2008

Since yesterday was such a bad day, I thought some positive news would be welcome. Sadie had a great day today… not only did they tell her what she needs to do to get home (drink, drink, drink), but also said that if all other things line up (good labs tomorrow and no new spots) we can go home!!!

She had a few new places that we are watching. The doctor does not think that they are part of the issue, but said she can’t rule it out 100% so she would like to see how it goes over night. In addition they will watch how Sadie reacts to the anti-viral by mouth and check her labs tomorrow to make sure her kidneys are cooperating well. If all those line up, we pack it up and take her home.

Thank you for your continued prayers and support. Sadie and I read her guestbook each evening and have appreciated the calls, visits and cards sent. WE are very excited to go from such a hard day yesterday to a day like today full of some hope!
Due to the fact that there will be news worth updating I will be posting again tomorrow

October 13, 2008

Today has by far been the hardest day here. It started with the new IV location; last night she was saying it was hurting, but this is nothing new while she is getting the anti-viral medicine (it burns going in). This morning however, she was in miserable pain… she was curled up in the fetal position crying. Nothing seemed to help as it had in the past (heat packs). At some point the nurses and we noticed that it was starting to blister under the dressing (sticker that holds the IV down) and there was a blister just above the sticker. Right before our eyes a third blister appeared. They turned the medicine off immediately and took the IV out and took the dressing off. I expected this to break open the one blister, but it did not. At this point no one really knew “why” the blistering happened. There was no listed side affect for the medications that matched what was happening (nurses check that out), but they called the pharmacy and they advised that under rare cases the medication can burn from under the skin and cause blistering. NO WONDER she was in so much pain.

From there they called a wound specialist to come look at the blisters. They looked at it and stated that what they needed to do was numb the site and do five small injections around the blisters in order to push out the medicine trapped within the tissue. Sadie was not overly thrilled at this point (a) about having this horrible burning in the first place (b) having the blisters (c) now hearing she had to have five more pokes in addition to another IV line. She was not convinced that she wanted to do it, but the wound doc assured her that once numb she wouldn’t feel it. They numbed her and the pokes started. I have to say that was the worst 20 minutes I can remember in a long time. Not only was it not numb, but it was horrible pain for Sadie and she cried like I have not seen this girl cry!! Each shot was work to convince her that she could get through. The reason for the pain (per wound doc) was that the medication trapped in there was being pushed out and the medication itself is very painful. Once she was done they patched her up and said they would come check on it tomorrow.

For pictures visit our family site at: http://jordanfamilywalkworthy.blogspot.com/2008/10/one-bad-iv.html
Shortly after this one of the nurses came in to tell Sadie that they were going to have to give her additional fluid as her kidneys were showing signs (via labs) that they were not liking the medications. In addition they needed to cut back the dosage of anti-viral medication in order to give her kidney’s a break. I did ask the doctor once she came in if this will affect her treatment in regards to setting her back and she said it should not. They will re-draw labs tomorrow and see how she is doing with this.

All of this put us into the 4:00 hour… it was a long day, but the end of the day was good. Sadie had some much needed loving faces come visit her and by the end of the day she was happy and glad that she could start fresh tomorrow.

October 11, 2008

Just a quick update on how Sadie is and some additional information.

I won't update each day, because we could be here a while and that is just too much. Neither will I bore you the moment by moment play backs of the events of each day. Just a brief update.
Sadie has had a few more out-breaks even as of this morning. However, some of the original blisters are starting to scab over. Remember that we need them to stop coming out and they all need to be scabbed over to leave (which now looks like it will be closer to 7-10 days). The first night Sadie had a lot of pain and had a very hard time sleeping. She also ended up feeling super sick and actually throwing up a few times. They are now treating that and giving her meds to help her sleep better. Three hours of sleep will not be enough to get her well. So, last night she slept much, much better and even slept in until about 9:30.

I found a great site that helps to make clear some of the questions we have been getting as to why she has to be in the hospital with this when most don't. I will link the site I found this on at the bottom if you want even more information.

Why not let shingles run its course? In otherwise healthy individuals, shingles may disappear without major consequence in two to four weeks. But the risk of complications from shingles increases with age, weakened immunity (the body's ability to ward off disease) and delay or lack of treatment. Complications resulting from shingles include post-herpetic neuralgia (PHN), which can cause debilitating pain lasting months or even years. Many PHN sufferers are also prone to depression. In addition to PHN, shingles can lead to other serious, acute or chronic complications, including those affecting vision, muscle function and the central nervous system.
Can a person who has never had chickenpox develop shingles?No. To get shingles, one must already have had a case of chickenpox and therefore harbor the varicella-zoster virus in the nervous system. However, the case of his or her chickenpox may have been very mild and unrecognized.

Is shingles contagious? Shingles cannot be caught from a shingles sufferer. Nor can a person catch shingles if exposed to someone with chickenpox. However, a person who has never had chickenpox can come down with chickenpox if he or she is exposed to the shingles rash. Although shingles is caused by a herpes virus, it is not the same virus that causes the common oral and genital herpes infections.

(from me: you can see I had that wrong about how Sadie got Shingles, good to know the facts! The reason she is "isolated" is because they do not want her to expose any of the immune surpressed patience or young children within the hospital. Why they don't children allow children under ten (including her sister) in with her is they feel they are exposed and subject to more cold, etc and could carry something in which would make healing even harder on her).
What other complications are associated with shingles?In addition to PHN, complications affecting vision and/or hearing are possible if shingles appears on the face. For instance, if shingles affects the eye (ophthalmic shingles), the cornea can become infected, resulting in temporary or permanent blindness. In patients with severely weakened immunity, the shingles virus can also spread to internal organs, infecting the lungs, central nervous system and brain. However debilitating it might be, shingles is rarely fatal, except in patients with severely weakened immunities.
http://www.vzvfoundation.org/shingles&phn.html
After reading all this late last night I spoke more with the head Rheumatologist this morning who is caring for Sadie and she confirmed that they were concerned that she could have a larger break out and that it could affect internal organs. This is why she is on the IV anti-viral medication and will continue to be on them until they release us and move her to oral treatment.
So, even though being in the hospital is not fun and we would a) rather be home b) have our entire family together, at least she is here, getting the care she needs.
Thanks again for all of your support and care for Sadie. I will update in a few days.

October 9, 2008

The events of today I was thinking were unrelated to Sadie's JRA, but it actually ties together. On Tuesday Sadie came home from school asking her dad to check her back because it was stinging and she thought maybe she was stung by a bee. He checked her back, but there was nothing there. Later that night she asked me to do the same; which I did and found only a small red spot that looked almost like a pimple... I told her it was nothing and that was that.

Wednesday night she tells us it is stinging even more and was hurting her a lot. I checked again and this time found tons and tons of little dots on her back streaming down from the first. Each was filled with clear fluid; they looked like tiny blisters. I gave her some benedryl hoping that if it was some type of allergic reaction that it would get better over the night. In the morning (today) I checked her back again and it was much worse (bright red), but she was/is feeling fine so I told her I would make a doctor appointment, but lets go on with our day. So, we did.
Our family doc was able to get us in pretty early in the morning. So I was able to get Sadie right before school started. Dr. Andy went over the last few days and examined the rash. He said... I am pretty sure she has shingles, but it's not very common in kids and I want to check a few things and call her Rhematologist. By this point I had all ready told him that she had Remicade on Monday in case this was some type of reaction. He left the room, talked to Dr. Wallace and came back to say that she did have shingles and they felt that oral anti-viral would not be enough considering she just had Remicade. He said she would need 5 days of treatment at the hosptial. My first response was "so we go in each day and have the IV meds there?" he responded "well, you will probably have to stay, but I am waiting for Dr. Wallace to call me back and then I will let you know".

So where that left us... Sadie has been admitted to Children's. At this point the IV line is in, but medication has not yet been started. There is a lot of people involved... the nurses and residence that will be caring for her, Rheumatology, Infectious disease docs and potentially others. So, there are a lot of I's that need to be dotted and T's that need to be crossed. I was extremely hopeful that the five day prediction would be wrong and that she could leave sooner, but that is not the case. A doc came in and went over what they need to happen for her to leave. Much like chicken pox all the "blisters" must burst and scab over before she can leave and no new ones can show up... well, none of them have crusted over as of yet!! I asked her to confirm the five days and she said each body is different and that it will more than likely be at least 5 days. (did you catch the at least part). HOWEVER, the anti-viral medication they are giving her should help speed up the process.

So, how does this have to do with her JRA. They believe that her immune system was weakened which is why she got the shingles. She probably (unknowingly) came in contact with someone who had chicken pox.

In the time I have started writing they have started her medication. She will be given the anti-viral medication by IV every eight hours (not sure how long that goes on yet).
Thank you for all those who all ready knew about these developments, who have offered your help and your prayers over to us. Thank you all who read this, for your continual caring for Sadie!!