Beute Bunch: What a CRAZY week!!

Well, for those who don't follow me on facebook this is what went down;

Sadie started a fever a week ago this past Sunday. I cannot express to you the level of LOATHING I have for fevers and Sadie. Sadie is very prone to Febrile Seizures. So, when she has a fever we go on "Seizure Watch".   I can't take my eyes off her. During the day she will be in my arms or in my view at least...and at night, in our bed. Some may call it overkill or over reacting. However, if you ever had to witness your child in a Tonic Clonic (Grand Mal) Seizure, it is something you NEVER want to repeat again. We have seen three in Sadie. Horrifying...truly.

Monday she continued to fever all day and she slept majority. The fever was her only symptom. By afternoon I was certain she had a Urinary Tract Infection. Called the doctor and he sent us to the ER. We were there from 6:00 p.m. to 2:00 a.m. The nurse upon exam also was certain for a bladder infection. However, urine sample came out negative. They did a couple of blood tests and those also all came out normal. We are left asking one thing...is this a virus, or is this the symptom of shunt failure or a shunt infection. Unfortunately, shunt failures present very much like a virus. Some of the symptoms are fevers, lethargy, vomiting. So, you can see why we have to be concerned always in the back of our minds. We opted to go home and "observe"her for a few more days.

Tuesday, Sadie continued the fever all day and was only awake for maybe one non-consecutive hour of the day.

Wednesday, Sadie continue to fever. This time the fever was climbing past 102 and was not responding to ibuprofen or Tylenol. Called back to the doctor, who, sent us back to ER.

We arrived at about 4:30. Both days we were there, the ER was overfull. It was just crazy how busy they were! They had children on beds in the hallways! I am very thankful that they take Sadie's condition in to first priority. Both times we bi pass the waiting room so we don't have to wait. This is more to prevent her exposure to other virus' that could make her very ill.

They ran some different labs that did come back elevated, which indicated that there is an infection SOMEWHERE...but we can't pinpoint the cause. We go back to, she could have some virus...or it could be shunt failure. The decision was made to admit her and further investigate in the morning. It was 11:30 when they admitted her, but 2:00 a.m. before they had a room available for us.

Thursday was spent doing more labs and swab for Influenza. Our prayer was that a virus would be detected on the swab. However, it did not. She vomited (passed her Nissen) Thursday afternoon, so they stopped feeding her. She continued to sleep all day Thursday. Her Neurosurgeon ordered her to have a Nuclear Shunt Study done on Friday morning.

Friday morning they started feeding Sadie again, however, now on a 24 hour drip. Not how I wanted to be sent home...that is for sure. A Nuclear Shunt Study is when they inject a magnetic dye into the valve of her shut. This material will fill all her ventricles and then you can watch it be pumped out and released into her abdomen. This basically shows the path of what the shunt does for her Cerebral Fluid. It was very interesting to watch. We could see it all in her brain as well as where it released into her abdomen. According to the Tech, this all looked good.

At 3:00 on Friday we were consulting with the floor doctors and agreed that we could just be discharged and continue monitoring her from home and also working our way off the drip feed and back to our "normal" feeding schedule. We all felt that the Nuclear Study looked well and we could rest easier that it was not a shunt malfunction. Well, within seconds that all changed. The Neurosurgeon walks right thru the two floor doctors, stopping the conversation immediately. He talks to Nick and I and says that he feels it is necessary to put in an external drain. This will be the ONLY way to verify if the shunt is working properly. Once the external shunt is in place, we will be monitored in the Pediatric ICU for 2-4 days. If we go home and she does have a shunt infection/failure, the danger to her is severe. Of course, there is risks with putting in the external shunt such as brain bleed and exposing the brain to infection that could ultimately end in death. We were shocked and taken totally off guard.   Trying to wrap my mind around everything, I ask if I am to call the office Monday morning to schedule this and he responded with "the OR room is reserved and the team is waiting". We literally had less than 3 minutes to make this decision. We asked for 5 minutes to "talk it over" (although there was really nothing to discuss). They gave us 3 minutes and we took that time to pray over her. In less than 15 minutes she was in surgery. The surgery lasted about 2 hours. 2 LONG hours. We were scared. Nick and I had the entire waiting room to ourselves and had little conversation. Although close to tears nearly the entire time, I continually had the verse "Be still and know that I am God". It gave me peace.

What the surgeon was able to find out during the surgery was that her ICP (Inter cranial Pressure) was within normal range. Had we not done this procedure, we would not be able to tell that. We spent the weekend in PICU monitoring that.   At no point did we need to use the drain, as her shunt was handling things all on it's own.

The external pump was removed Monday and we were discharged on Tuesday. Basically, all we can assume is that Sadie had a random undetectable virus which caused the crazy blood counts as well as her sleepiness. We are thankful for that. We are also thankful and have complete peace of mind, that her existing shunt is working as it should.

Sadie has returned back to her normal self and we are so very thankful!! She is jumping right back into the swing of things and is back at school TODAY!!

We went back to Mary Free Bed yesterday for an evaluation and she will start more therapy there. That will mean going to Mary Free Bed every Monday and Wednesday and then school every Tuesday and Thursday. Busy busy times, but that is all good! She will keep this schedule until March 25 and then after spring break, she will be going to school!! WOW!! So, this schedule will be allot for her, but good "training" for going to school soon.

Thank you to everyone who carried us in prayer last week. It was an exhausting week, but felt God's presence throughout.

I am not a fan of Sadie's new "haircut". I fear this will take FOREVER to grow out....thinking I need to find more wide headbands with some big bows!!