Saturday, May 31, 2014

Recovery take 4

Three shunt malfunctions in less than a month is not how We expected to spend this spring. This admission honestly threw us for a loop....we had believed that finally we were in the clear. Zach and I traveled to Indy early this week and actually had follow ups with Blake's neurosurgeon on Wednesday and his developmental pediatrician Thursday- all appointments went well Blake seemed to recovering quite nicely. They did however see that the fluid on his belly from the beginning of May (the reason they had to move the shunt out of his belly) had still not absorbed so they were talking about needing to come back in a month for a possible other surgery to removed the fluid. We obviously did not even get that far! So we came back home after a few days in Indy Thursday night and Blake was doing just fine- back to eating normally, getting more vocal and moving around a lot easier. He still tired out quickly but all in all was doing bounds and leaps better than that time last week.

Early Friday morning around 4:30 all of us were sleeping and Zach woke up when Blake started to violently and continuously cough. We looked at the video monitor and he stopped. I got up to get him a sippy cup with some water and by the time I entered his nursery to give it to him it started again followed by the shrilling scream and vomiting that I was already way to familiar with! Zach immediately helped me get him into the living room when his foot started to tremor, and his head veins became increasingly predominant. All signs we had seen before, with the last shunt malfunction. So we called Riley- and they instructed us to pack and just head on back up to Indy.

We basically relived 9 days previous to this event- we arrived, they tapped his shunt and sent fluid off for testing to make sure no infection. They then quickly got him into the OR to do exploratory shunt surgery since there was no obvious signs of kinks or areas of concern on the shunt series. It was at this point Zach and I waited. And waited. And waited some more. Dr. Ackerman then came out to the waiting room not necessarily with the best of news. There was really no outstandingly obvious sign of why the shunt malfunctioned this time. They had to replace the top shunt portion in his head (again) just as they did the last time. However the last time they knew why it clotted off at the upper portion- because there was a kink in the catheter at his collarbone- this time everything was intact, and draining well except for the new top part which clotted again.

Her theories---they are checking his heart to see if that is the problem. They are checking by doing an echocardiogram (this helps by looking at pressures within his heart- with his history of having an open PDA and then having his PDA ligation surgery- she is wondering if the pressure within his heart are too high. If they were too high it would cause too much force upward causing the shunt not to be able to flow freely downward- then overtime causing it to clot.) clear as mud right?! if that comes back okay- which we are still waiting for word on- she isn't quite sure the cause of why Blake's shunt is continuously malfunctioning.

But all in all he is doing well. They had the general surgeon come see him for his belly they figured why not look at it now while he's here. They did not seem to think it was means for concern as long as Blake continued to eat, drink and act normally! Which is a good sign- at least one surgery avoided!

Blake still has some pain here and there but is back to eating normally---like my skinny ' eats like he's fat' kid he is! Just been enjoying a lot of Mickey Mouse and Frozen!

It's been a roller coaster this month- and it looks like if they can't find a definite cause of why his shunt keeps malfunctioning it could end up being an even longer roller coaster ride! Hopefully though they will find a cause so his shunt will stop malfunctioning. During this time we can't thank everyone enough for the wide array of support, prayers and help we have received! It gets might costly to constantly be driving back and forth and I have yet to go back to work since the 7th and adding having to buy meals everyday for Zach and I it makes things a little tough. But with the support of everyone it has made things a bit easier! We couldn't be more humbled by the love that we have received from our friends, and family! Thank you all so much we can't say it enough!!!!

Friday, May 30, 2014

On the road again

Looking for prayers and positive thoughts sent our way. We have yet again had to rush to Riley Hospital with a shunt malfunction. Blake woke up at 4:30 this morning and started throwing up again. When I called the on call MD here at Riley they told us to hurry here. And low and behold the CT scan showed Blake had enlarged ventricles once again, meaning his just revised shunt was not working again (for the third time in a month)! Blake is in surgery now.
In bad times though the child always tries to smile!

Tuesday, May 27, 2014

Follow ups!

So apparently the doctors of Riley must have thought we loved it so much we wouldn't want to stay away for very long! So back to Riley we head for follow ups with Blake's neurosurgeon, and developmental pediatrician. So far the recovery process has been good...but a process nonetheless. While Blake was in the hospital he lost quite a bit of weight, and got rather weak. They say when a child is in the hospital they will regress developmentally. Luckily we didn't take too many steps backwards, he mainly just tires out quickly. It'll take time but I'm sure he will regain his strength and get back to where he was prior to all this medical fiasco!

His scars are just proof that he is one tough cookie!!!!

Thursday, May 22, 2014

Going Home Take 2!

We have tried it again and so far so good! We came home yesterday afternoon and Zach, Blake, and I couldn't be happier!


Where to begin. It's taken a few days just to recover from the events of the weekend and then I realized I had completely forgot to update everyone on what actually happened on Friday/Saturday of last week. So here goes nothing....

We arrived home around 4pm on Friday from Riley. Blake was super happy, very playful and could not get enough of being home. We relaxed as a family and cuddled on the couch.

At 9 pm Blake had fallen asleep on the floor so Zach and I took him and laid him in his crib. We have a video monitor, and no sooner had I grabbed it from the room and sat on the couch Zach and I heard Blake cough a few times and then heard the most violent heartbreaking screams. We ran into his room only to find his whole bed and him covered in vomit. (Except for his actual blanket- bubba loves it so much he somehow, it's a mystery how, kept it clean and ready to cuddle with). We cleaned him up, changed his clothes and as we took him into the living room and sat down again- it happened again. I proceeded to call Riley's on call neurosurgeon- they paged them. Even though the wait was really only a few minutes it felt like hours before they called back. I quickly told a brief summary of Blake's history, told that we had just been discharged hours earlier, had surgery on the 8th, his shunt was externalized for four days and then had surgery again on the 13th to covert the VP shunt to a VA shunt....and blah blah blah. The doctor then proceeded to share her thoughts. Post-op vomiting in toddlers can be normal and usually caused by constipation and she told us to call if he had an neurological changes, or if he continued to throw up into the morning. Deep down- Zach and I knew this wasn't a GI complication both of us believed it to be the shunt but the professionals did not think so- so it made our minds ease a but. Until a few hours later when the vomiting persisted. I called again to Riley now early Saturday morning- where I spoke to a resident who mimicked the same instructions as I was given the previous night. I was quite adamant that I thought it could be his shunt but he said without neurological changes that would be a stretch and he believed that it was either constipation (although I had pointed out he has had many bowel movements since the surgery that was four days ago!) he then told me to take Blake to the ER at first signs of dehydration but that the GI issues should pass with time. Believe me I have now rolled my eyes a multitude of times. The day continued as did the vomiting. Blake's stomach had completely concaved on itself it was sunken in and he was getting paler by the minute. So we packed- we packed as if we were going to Riley because we knew- in our hearts it was the shunt. So we went to the ER Blake received fluids and was actually able to keep down some pedialyte. After a kub, a X-ray, some labs and everything came back negative the doctor attempted to send us home. It was then that this momma lost it! I just knew something was wrong with his shunt but not one doctor that I've spoken too believed it because neurologically Blake could still follow commands and look at us and blah blah. But Zach and I know our son and we knew it wasn't just a GI bug. So we agreed to get out of their hair and go home....ONLY after they CT his head. The doctor continued to tell us this would not show anything but ordered it for us anyway.

Then things all went down hill from there.

He came back with a sullen face to tell us Blake's ventricles in his brain were "slightly"dilated but he did not know Blake's normal. But that he would try to get Riley the image for comparison. I'm not a doctor but I will tell you Zach and I saw the CT scan I think slightly dilated was a huge understatement. Once Riley saw the images it was pretty quick from there on out. The ambulance was called, Blake was vomiting again, and they told us we would be having another emergent surgery. On the ambulance drive there Blake was given Mannitol emergently to help with the swelling in his brain and prevent any damage. I rode in the ambulance as Zach and my other in law followed literally right behind us the whole way.

Once at Riley we basically relived May the 8th. They tapped his shunt to test for infection then prepped us for surgery. Got a shunt series X-ray. At this point Blake was worn out, pale and to be quite honest looked like hell. I've had some scary times with Blake and this was pretty high up there. He just appeared so weak, so fragile, not smiling, not really even able to stay awake longer than a few minutes. It was definitely a feeling of helplessness. On the shunt series it showed right below the clavicle that the shunt catheter was kinked blocking the CSF from draining.

They took him to surgery around 6:45....and Zach and I passed out from exhaustion in the surgery waiting room while my mother in law powered through and sat by our sides. I woke shortly after 9 in a panic once I realized the time. Thankfully it wasn't long after, maybe 15 minutes or so when the doctor came out. The shunt catheter was straighten and they actual widen the curve of the catheter by making incision from Blake's neck down to the chest. However, that wasn't all. Apparently not only was that portion of the shunt not working but the actual reservoir portion in his head also was blocked. So they had to go in his head and replace the reservoir portion of his shunt....thankfully though Blake should recover back to his normal!

It took a few days for Blake to
start feeling somewhat better. And it wasn't until my birthday, Monday, for us to see that smile we've all learned to expect and love from Blakers!

Saturday, May 17, 2014

Not what we were hoping.

Asking for prayers tonight. Blake and I are currently in an ambulance on our way to Riley with daddy right behind us. Last night after only 5 hours home Blake began to vomit. We quickly called Riley and they told us it could be a common GI bug or a GI problem caused from constipation post-op. We waited it out then after a long sleepless night and many more times of Blake throwing up we called again. They sent us to deaconess for rehydration and to get checked out. After a fluid bonus, labs, a KUB (xray of his belly) and a chest X-ray everything came back normal other than some constipation noted on the kuB. The plan was to send us home on miralax.....however Zach and I just felt that something was not right. So before discharge we requested a CT of Blake's head be done- and then it all went downhill from there. Blake is being admitted to Riley's children's hospital- again- for enlarged ventricles of the brain. Again we believe his revised shunt is not working properly. This is a very hard time especially after believing we were in the clear. Positive thoughts and prayers sent our way are much needed at this time! Thanks for all the support and we will try and keep everyone posted.

Friday, May 16, 2014


Some things never change!

Home is where the heart is

In 8 days Blake has had two surgeries, a PICC line placement which was changed 4 times, 2 CT scans, 2 ultrasounds, a couple X-rays, he was on pretty much strict bed rest for 4 days (do you know how hard it is to keep a two year old in bed that long?!).

So happy to say though that it's all over this time and we are going home a lot earlier than our doctors expected! Maybe now we can get a solid good nights rest!!

Thursday, May 15, 2014

Eat, Drink, and Get Stronger.

Blake's been working hard here at Riley for the past few days to make up for being in bed for a week. Blake is definitely weaker than usual and it will take time and stretches but he has already showed much improvement just within 24 hours!
As he recovers from surgery we will focus on eating....which he has absolutely NO problem with!

Drinking...which he is currently lacking- boy just has no thirst since we were admitted.

And get stronger with physical therapy.....which as you can see we are working extra hard on!

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